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Outsider: confused history of multiple antidepressants, symptoms still occur after years


Outsider

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Posted (edited)

Hi @Outsider,

 

I would not worry about what dose to jump off these drugs right now. Typically people on this site will get down to very low doses (under 0.1mg) before jumping off most meds. Given your sensitivity to reductions, I think you should aim for this too, if you can. Right now I think it is possible you are suffering some withdrawal from the topiramate. Have you tried a small increase of the dosage? I know you were not taking it for very long, but your body is likely pretty sensitive to changes right now. I would try increasing 1mg and holding that for a few days to see if it helps. If it has little or no benefit but no adverse effects you could try increasing again.

 

In the long term, here is a review of non-pharmacological treatments for migraine. I would ignore the TMS and other electrical stimulation recommendations, as well as some of the supplements and focus on the behavioral therapy recommendations. As mentioned, melatonin is likely helpful, although this review found that riboflavin seemed to have no benefit. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5935652/

 

Note at the beginning of the review they say: "Migraine is one of the most common and debilitating neurological disorders. However, the efficacy of pharmacological therapies may have unsatisfactory efficacy and can be poorly tolerated. There is a strong need in clinical practice for alternative approaches for both acute and preventive treatment. Occasionally, this need might arise in the context of low-frequency migraneurs who are not keen to use medication or fear the potential side effects. At the opposite end of the spectrum, clinicians might be faced with patients who have proven refractory to numerous medications."

 

I think you should consider that you can no longer tolerate special medications for the migraines. They are not expected to be great treatments, anyway, so you are not missing out on much. I would also stay away from the more invasive treatments. Generally "invasive" in medicine is simply code for "more dangerous" and doesn't necessarily mean more effective. Have you checked the ingredients in the diclofenac? Usually these things have others (mostly non-active) ingredients, but people in wd can sometimes develop a sensitivity to them. Especially when changing medication brands. 

 

For the panic, I think I would just recommend some of the non-pharma coping strategies on the website. I think you will find some of them surprisingly effective. Walking while focusing on your breath can be particularly effective. I think the important thing for you is to stay away from meds and supplements as solutions and focus on having a stable routine for the day. Diclofenac is simply an NSAID. There is nothing particularly special about it. If you cannot tolerate it, but need to take something and don't find melatonin or riboflavin effective, there is always ibuprofen, aspirin, or naproxen, which are similar drugs that can be bought at pharmacies in most countries. As you'd expect, I'd recommend against using these as well, if you can.

 

Drugs are a very imperfect solution and for the most part just do more harm than good. I think you need to recognize that there is little evidence taking as needed drugs will help you. If your condition feels dangerous, taking many of these drugs is likely to make it more dangerous rather than less. I don't think there is any evidence of them decreasing mortality risk (as far as I know there are no treatments for migraine which decrease mortality risk). Only some symptomatic relief can be expected. As I mentioned with Diclofenac, there is evidence of increasing mortality risk. I really want you to focus on getting through these migraine episodes with absolute minimal medication. Remember that symptoms wax and wane. It may feel like you cannot take it anymore if symptoms worsen, but realize that symptoms may not actually worsen, and may simply start to improve on their own or with some help from relaxation, breathing techniques or avoiding excessive stimulation, sound and light. 

 

Here is a meditation for pain relief. I think in keeping with the CBT recommendation there, I would see if you can get someone to instruct you in relaxation techniques. Many therapists are proficient at this. Really hope you get some relief soon @Outsider, sorry you had to go to the ER again. 

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

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Dear @OutsiderI'm so very sorry to read what you're going through.  After reading your posts, I have to say how impressed I am with your strength.  I believe you have what it takes to endure the proce

Hi @Outsider, I'm still thinking about your situation.  It may be that you're experiencing rebound migraines and seizures.  This supports your conversations with Dataguy, perhaps confirming the i

@Outsider  I will have to ask you to please watch your language. I have edited you recent post to remove inappropriate words. This is a family friendly site and we have a good number of minors as memb

Outsider
Posted (edited)
10 hours ago, DataGuy said:

Hi @Outsider,

 

I would not worry about what dose to jump off these drugs right now. Typically people on this site will get down to very low doses (under 0.1mg) before jumping off most meds. Given your sensitivity to reductions, I think you should aim for this too, if you can. Right now I think it is possible you are suffering some withdrawal from the topiramate. Have you tried a small increase of the dosage? I know you were not taking it for very long, but your body is likely pretty sensitive to changes right now. I would try increasing 1mg and holding that for a few days to see if it helps. If it has little or no benefit but no adverse effects you could try increasing again.

 

In the long term, here is a review of non-pharmacological treatments for migraine. I would ignore the TMS and other electrical stimulation recommendations, as well as some of the supplements and focus on the behavioral therapy recommendations. As mentioned, melatonin is likely helpful, although this review found that riboflavin seemed to have no benefit. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5935652/

 

Note at the beginning of the review they say: "Migraine is one of the most common and debilitating neurological disorders. However, the efficacy of pharmacological therapies may have unsatisfactory efficacy and can be poorly tolerated. There is a strong need in clinical practice for alternative approaches for both acute and preventive treatment. Occasionally, this need might arise in the context of low-frequency migraneurs who are not keen to use medication or fear the potential side effects. At the opposite end of the spectrum, clinicians might be faced with patients who have proven refractory to numerous medications."

 

I think you should consider that you can no longer tolerate special medications for the migraines. They are not expected to be great treatments, anyway, so you are not missing out on much. I would also stay away from the more invasive treatments. Generally "invasive" in medicine is simply code for "more dangerous" and doesn't necessarily mean more effective. Have you checked the ingredients in the diclofenac? Usually these things have others (mostly non-active) ingredients, but people in wd can sometimes develop a sensitivity to them. Especially when changing medication brands. 

 

For the panic, I think I would just recommend some of the non-pharma coping strategies on the website. I think you will find some of them surprisingly effective. Walking while focusing on your breath can be particularly effective. I think the important thing for you is to stay away from meds and supplements as solutions and focus on having a stable routine for the day. Diclofenac is simply an NSAID. There is nothing particularly special about it. If you cannot tolerate it, but need to take something and don't find melatonin or riboflavin effective, there is always ibuprofen, aspirin, or naproxen, which are similar drugs that can be bought at pharmacies in most countries. As you'd expect, I'd recommend against using these as well, if you can.

 

Drugs are a very imperfect solution and for the most part just do more harm than good. I think you need to recognize that there is little evidence taking as needed drugs will help you. If your condition feels dangerous, taking many of these drugs is likely to make it more dangerous rather than less. I don't think there is any evidence of them decreasing mortality risk (as far as I know there are no treatments for migraine which decrease mortality risk). Only some symptomatic relief can be expected. As I mentioned with Diclofenac, there is evidence of increasing mortality risk. I really want you to focus on getting through these migraine episodes with absolute minimal medication. Remember that symptoms wax and wane. It may feel like you cannot take it anymore if symptoms worsen, but realize that symptoms may not actually worsen, and may simply start to improve on their own or with some help from relaxation, breathing techniques or avoiding excessive stimulation, sound and light. 

 

Here is a meditation for pain relief. I think in keeping with the CBT recommendation there, I would see if you can get someone to instruct you in relaxation techniques. Many therapists are proficient at this. Really hope you get some relief soon @Outsider, sorry you had to go to the ER again. 

I reversed back to the 12.5 MG dose of Topiramate, I think it was too much to risk

 

I'm not new to panic episodes, had them 24/7 for 2 years straight with hardly any breaks, but from that experience, I seemed to grow an adverse reaction and I'm better off without that

 

BTW, I tried Magnesium yesterday (470 MG) and somehow felt a near immediate stress relief, it's either calcium blocking or lack of magnesium I suppose? (it had B6 with it, didn't find any supplement with magnesium alone) 

 

The reason I asked when to jump off the meds is to calculate the time needed, I'm not in a stable situation and I need to be clear with my family about how long they'll have to support me and how much is it gonna cost

 

Meds are hard to get here and the financial situation is in the mud, I'm even giving up my my mental health living in a rural area with hardly any sort of entertainment or friends / activities or even power / internet, just for the sake of my physical health, because the only person who is available to help me is stuck in here

 

Thanks for the migraine links, they seem to be what I'm looking for, will check as soon as possible 

 

I tried other NSAIDs but somehow I'm building tolerance to them too fast, it's like they work once or twice then no more. 

 

I think I'll try to stabilize a bit then taper Pregabalin, bi-weekly since it has a very short half life

 

Thanks for the help again 👍 that long post helped me decide a bit about what to do with the migraine 

 

 

As for therapy : it's a pain.

It's already too hard to move, transport is expensive, therapists are expensive, and by far thet end up referring me to psychos to be medicated after being diagnosed with "depression", not to mention the loooong loooong wait between sessions only to get a bit of talking which is their lectures instead of a conversation most of the time. 

It's frustrating to say the least. 

Edited by Outsider
The bit about therapy

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

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  • Moderator

Tough to say @Outsider, but I would expect to need support for years. You have suffered a significant injury due to the meds. It's going to take over a year to taper off and then you may still have problems for quite some time after that. It's the unfortunate reality of injuries caused by these medications. 

 

If therapy is too much trouble, you could simply watch youtube videos on progressive muscle relaxation, meditation for relaxation etc. There are some good ones. 

 

That is a fairly large dose of magnesium. I would generally not take that much, or take it frequently. It does have real pharmacological effects. 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
Outsider

ER again, twice today

First time was 75 Diclofenac shot, it decreased the pain a bit but didn't solve it

 

A few hours later, it fired up again, went to the ER and got a Tramadol shot, also heard that it's probably the last thing Tramadol will be available, they closed local factories and there's no import (is what I understood) 

 

Still in pain but decreased, don't know if it's gonna go away, gonna try to sleep, pain is no longer an issue tbh but it keeps triggering nerve attacks. 

 

@DataGuy I wanted to look for physical therapy (how to do it myself) for migraine but screens are too much for me, can you help? 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

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Outsider

Goddammit.. Every day is either having migraine and going to ER or just packing myself in bed trying to sleep all day trying to avoid migraine, because screens and any sort of pushing / stress triggers a full migraine and my head is always throbbing, ready to trigger one.

 

It's been months! This isn't a life! What am I supposed to do do now?! Keep wiggling in pain hoping that my next migraine wave will be magically solved somehow?! I have to put up with that for YEARS ahead?! 

 

I'm getting crazy.. I keep getting random urges to take random meds.. Just anything.. ANYTHING to stop this painful madness.. 

 

Should I increase Topiramate? 

Can I cross over from Diazepam to Topiramate? Topiramate seems to be doing the same thing as Diazepam minus the tolerance issue.. If increasing the dose will stop this migraine then I'm willing to extend my withdrawal in exchange.. I'm really tired of fighting myself, my thoughts and my pain, ignoring all my emotional needs all day long.. Solitary confinement feels like a sweet hotel in comparison.. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

You're in a very tough spot, @Outsider. I can't say I know what is causing your migraines, but would not be surprised if they were due to both the adverse effects of the meds and the withdrawal effects, compounded by the withdrawal history. The best advice I have is the advice I've already given: avoid all new meds, only slow changes to current ones. I think the danger with trying to discontinue any of these drugs too quickly is that your symptoms upon withdrawal won't be tolerable and you will try to reinstate. There is not really an easy solution. I don't think increasing any of the drugs is a good solution. Diazepam and topiramate are fairly different and I'm not really sure topiramate is any better.

 

I think the urge to do something to fix your problems is just making them worse. Keep in mind that happens often in medicine, especially neurology and psychiatry. More treatment = worse problem. I know it is a bit late now, and it seems impossible, but try doing nothing for a few days or weeks. No changes in meds, no emergency migraine treatments. Other than that I don't think there is any good advice I can give.

 

Youtube has plenty of therapies that are audible-only. All you need to do is listen.

Relaxation response explained by Dr. Benson

Guided relaxation for adults and children

Progressive Muscle Relaxation Audio Guide

 

I think it's best for you to remember when you have your next migraine that the relief from any treatment will only be temporary, and could make things worse when it wears off. That is how the nervous system works. When it is given a drug to relieve pain repeatedly, it will take this as a signal to downregulate its own pain-relieving mechanisms. The same with sedatives like benzos. Sedating the nervous system long term will result in it being much more aroused and active when the drug is removed. No doubt it can be painful, but there is no good treatment for that. 

 

It's also important to remember that the migraine pain will not last forever. It will slowly improve, maybe sooner than you think. But you need to leave your system alone and stop bombarding it with different medications. You need to tell yourself that you can tolerate the pain. People tolerate all sorts of excruciating pain for long periods and survive. You can do it too. More meds is not the way out of this. 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
Outsider
4 hours ago, DataGuy said:

You're in a very tough spot, @Outsider. I can't say I know what is causing your migraines, but would not be surprised if they were due to both the adverse effects of the meds and the withdrawal effects, compounded by the withdrawal history. The best advice I have is the advice I've already given: avoid all new meds, only slow changes to current ones. I think the danger with trying to discontinue any of these drugs too quickly is that your symptoms upon withdrawal won't be tolerable and you will try to reinstate. There is not really an easy solution. I don't think increasing any of the drugs is a good solution. Diazepam and topiramate are fairly different and I'm not really sure topiramate is any better.

 

I think the urge to do something to fix your problems is just making them worse. Keep in mind that happens often in medicine, especially neurology and psychiatry. More treatment = worse problem. I know it is a bit late now, and it seems impossible, but try doing nothing for a few days or weeks. No changes in meds, no emergency migraine treatments. Other than that I don't think there is any good advice I can give.

 

Youtube has plenty of therapies that are audible-only. All you need to do is listen.

Relaxation response explained by Dr. Benson

Guided relaxation for adults and children

Progressive Muscle Relaxation Audio Guide

 

I think it's best for you to remember when you have your next migraine that the relief from any treatment will only be temporary, and could make things worse when it wears off. That is how the nervous system works. When it is given a drug to relieve pain repeatedly, it will take this as a signal to downregulate its own pain-relieving mechanisms. The same with sedatives like benzos. Sedating the nervous system long term will result in it being much more aroused and active when the drug is removed. No doubt it can be painful, but there is no good treatment for that. 

 

It's also important to remember that the migraine pain will not last forever. It will slowly improve, maybe sooner than you think. But you need to leave your system alone and stop bombarding it with different medications. You need to tell yourself that you can tolerate the pain. People tolerate all sorts of excruciating pain for long periods and survive. You can do it too. More meds is not the way out of this. 

I get it but my problem is NOT the pain anymore 

 

Migraine always escalates to a neurological attack where it leads to seizures, that's not something to take lightly because multiple times by now, I lost breath and I don't know how I managed to stay alive till I got some sort of treatment 

 

I'll try to avoid medication for a while, I'll try to check the audio you sent too but audio is the hardest for me to check, I have audio sensitivity and it's too hard to focus and grasp it, text is easier and short videos (5 mins or less) are the easiest 

 

.... 

I guess I'll have to try and push through.. I don't know how I'll manage.. But I'll try.. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
Outsider

Also I meant more of massage thing because my shoulder and neck seem to have a huge effect on migraine pain, but I don't know how to massage them right, and as soon as I let me hand go, the pain is back 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator
Posted (edited)

Dear @OutsiderI'm so very sorry to read what you're going through.  After reading your posts, I have to say how impressed I am with your strength.  I believe you have what it takes to endure the process of tapering these drugs and healing toward recovery.  When one is in hell, survival requires a depth of discipline, acceptance and patience that people not in recovery can't begin to imagine.  I wonder if I might share with you some reflections.  I offer them as support.  You are having to endure so much.

 

First I believe we have to accept that adding new drugs will mainly complicate the problems and risks.  I can relate to wanting to try anything, or wanting to get rid of something immediately.  This is a neuro-emotion.  We have to ignore Neuro-emotions.  Distract ourselves.  Let ourselves "float" through the urgency, so that we can stay steady with our course.

 

Second, we have to develop habits of stress reduction even though the situation may be highly stressful.

 

Here are some techniques used in trauma therapy that can help with stress:

Try breathing in deeply to the count of 5, holding the breath to the count of 2, and strongly exhaling to the count of 8.  Try doing this regularly for 5 minutes in the morning and again in the evening.  Do everything you can to get good sleep.  Breathing exercises help to lower stress hormones. 

 

Another exercise is called The Butterfly Hug.  Doing this EMDR method helps regulate breathing:  Wrap your arms around yourself so that each hand touches the opposite upper arm or shoulder. Then tap your arms/shoulders in an alternating rhythm, one-two-three, first one hand then the other.   Repeat, allowing your breath to calm and deepen.   I have to do this throughout the day.

 

To rub your sore muscles, you can put a ball on the floor (or bed) and lie down with it under your shoulders, neck, etc.  Gently let yourself roll over the ball.

 

I don't want to overload you with ideas.  Instead, for now, I'll point you in the direction of the symptoms and self care section.  

 

Later, I'll return with some other ideas.  

My very, very best to you, Outsider.  (Please know you're an insider here🙂)

Your comrade in pain,

Arbor

 

 
Edited by arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

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  • Moderator
Posted (edited)

Hi @Outsider,

I'm still thinking about your situation.  It may be that you're experiencing rebound migraines and seizures.  This supports your conversations with Dataguy, perhaps confirming the importance of not adding more drugs, and working closely with him to begin stabilizing your system.  Here are 2 articles I found which explain how the drugs you're taking to stop the seizures and migraines are themselves causing more seizures and migraines.  

Dec 8, 2020 — Medication overuse headaches or rebound headaches are caused by regular, long-term use of medication to treat headaches, such as migraines
Not just you, but me, and all of us here, need great patience.
I send you good wishes,
Arbor
 
PS--When you can stabilize then the brain has a remarkable capacity to heal.🕊️
 
 

 

 


 

 

 

 
 
 
Edited by arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

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  • Moderator

Hello @Outsider

It is morning here--sending greetings to your evening. 

 

If it is helpful, I'll share with you a few things:

Potassium is one of the electrolytes that is important for your situation.  Dataguy's suggestion to use natural salt is a good idea.  I'd like to add that adding extra potassium (chloride, etc.) can help.  I take it before bed every night.  Can you get that at your pharmacy?.  Foods like dates, raisins, apricots, cooked spinach are good sources.

 

I spoke with a friend who has suffered from seizures and migraines about what helps him.  He said that he has learned to tune into his body and sense when an aura is beginning so that he can lie down.  He says he has to slow down agitating thoughts and "let everything go".  Often, he says, then they pass.  He also recommends ginger.  He drinks ginger juice.  Can you get ginger?  There are studies showing how it helps.  If you can't get ginger spice, I'll see if I can figure out an alternative.

 

You mentioned your sensitivity to light and the screens.  Alto recommends using glasses that block the blue ray.  Sometimes the pharmacy carries them.  Otherwise when i send you studies, i don't expect you to read them, but to know that there is a source that supports various suggestions.

 

Please know that I am thinking of you and hold in my heart your eventual recovery,

Arbor

 

 

 

 

 

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

Link to post
Outsider

@arbor you have a nice name

 

Thanks.. Really, your posts came in a really nice time, I'm not sure if I thanked DataGuy enough but I should anyway, you two have helped abd DataGuy has been there for long

 

Those posts were nice... (Thanks for calling me an insider too) 

I thought I got the hang of Neuro emotions after having severe 24/7 chronic panic for like.. 2-3 years straight after the old withdrawals, especially with seizures with them which (at the time) I didn't know were seizures, I used to twitch and lose control muscle, breathing and get shocks but since I didn't foam or pass out (used to need to spit a lot tho, and had a very dry mouth) it wasn't a typical seizure and was disregarded as one

 

Now somehow all that will power is failing me with migraines, as if I'm completely depleted of it, fighting my emotions all those years. 

 

I checked the links you sent me, tried to open the 2nd but could only read the abstract, I guess I didn't figure how to use the site

 

Tho they say it results from pain medication overuse, which only happened recently, before that it was the antidepressants and stuff, do they have a similar effect? If so, it'll make sense. 

 

Please link any studies you have, I might not read right away but I check and try when I can 

 

I pushed through today without any pain med and using only ice.. Slightly more stable than usual 

 

But I overexerted myself physically and my chest started to hurt when I inhale, I hope that's normal? I forgot what's normal and what is not. 

 

I'll try to get Ginger and will ask about Pottassium, tho it's a run down country and I'm not sure how many things are available around 

 

Glasses that block blue rays.. I remember them being too expensive, but I've been meaning to check them

Tho sound sensitivity is too much, I wake up easily at the morning from people walking beside me barefoot, and the noisy construction / neighborhood doesn't help either, putting something in my ear isn't always an option either because it pressures my nerves and fuels the migraine 

 

I want to try Melatonin as DataGuy said too but I'm kinda scared of being stuck with another med. 

 

Just to mention, I've been doing a 16 hours fast on most days for 2 weeks now, trying to keep it daily but sometimes my hunger gets the best of me 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

Hi @Outsider(Insider)--Good to hear from you.

I'll be able to converse more tomorrow, but in the meantime this sounds good--

7 hours ago, Outsider said:

Just to mention, I've been doing a 16 hours fast on most days for 2 weeks now, trying to keep it daily but sometimes my hunger gets the best of me 

The fact that hunger comes up is a good sign.

Thinking of you,

Arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

Link to post
  • Moderator
Posted (edited)

Thank you @arbor for the posts. I'm afraid I become a broken record sometimes.

 

@Outsider will try to find some massage videos for you a bit later. I am traveling for the next few days so unfortunately can't check in much. Not sure what to do about the seizures, but arbor's suggestion seem good. Hard to know how to control medication-induced seizures, other than stabilizing and slowly reducing medication. The breathing problems I am worried about. The MHRA sent this warning out earlier this year for pregabalin, but I am not sure if that is contributing to the problem (other than via tolerance or wd). 

 

The odds of an epilepsy diagnosis seem to increase with length of benzodiazepine prescription, according to this study

"In addition, users who quit BZD for more than 6 months still exhibited a higher risk of epilepsy than did the non-BZD users.

A considerable increase in epilepsy occurrence was observed in ones with BZD use, particularly in those with prolonged use, multiple exposure, and high-dose consumption."

 

If the seizures are caused by medication overuse, the best thing you can do is stabilize and slowly decrease the dose. As needed use should be minimized. I know you are trying to do this and it is very difficult. Just worried about adverse reactions and exacerbation. The breathing problems are alarming, but I think the solution is still the same. Very tough situation, seemingly impossible I know, but you have no options at this point. I know behavioral interventions seem puny and inadequate now, but they might be your only way out. Breathing exercises would be good to do multiple times a day, for relaxation, yes, but who knows, you might strengthen that area with practice and help prevent or mitigate the breathing issues induced by the seizure activity. Very slow, full breaths, (filling your entire lungs as much as possible) with the outbreath being longer than the inbreath, do typically help with relaxation. 

 

Glad you are finding self-massage helpful at least short term. We'll try to expand on that later. Really hope you start to stabilize soon. I know this is horrible. 

 

Edited by DataGuy

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
Outsider

Pfft.. 

"patients with neurological disease, renal impairment and those who are taking antidepressant medication are also at increased risk of breathing problems from the drug, the Medicines Healthcare Regulatory Agency (MHRA) said (18 February)." 

 

Kinda completely rings a bell, no wonder.. 

 

Guess I'll stabilize then start decreasing Pregabalin, seems to be the most dangerous at the moment. 

 

BTW, turns out I'm taking 80 MG not 75 MG of Pregabalin, father was making the doses for me and he threw out the fifth rather than the quarter 

 

Doesn't matter.. I feel like giving up on all thoughts together really.. Both positive and negative 

Dunno if that's a good thing, don't care either. 

 

I'll just keep going I guess, if I die, so be it. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator
1 hour ago, Outsider said:

Doesn't matter.. I feel like giving up on all thoughts together really.. Both positive and negative 

Dunno if that's a good thing, don't care either. 

 

I'll just keep going I guess, if I die, so be it. 

 

Unfortunately I think that has to be the attitude for many people. If you die you die. If you live, we'll throw a party. 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
Outsider

@DataGuy @arbor how can you have the mental capacity to spend that much effort on helping people while you're in pain?

Doesn't it hurt? 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

Good morning dear @Outsider--

Your words echo the same thoughts that I arrive at (especially in the middle of the night)--and then I find some peace--what I imagine is meant by the expression of "letting go of all attachment" or radical acceptance:

On 8/29/2021 at 2:16 AM, Outsider said:

I feel like giving up on all thoughts together really.. Both positive and negative 

 

On 8/29/2021 at 2:16 AM, Outsider said:

I'll just keep going I guess, if I die, so be it. 

I certainly never expected to have my life (or to see other people's lives) so torn apart.  The medical world prefers to keep us (and all the future sufferers) invisibilized.  Accepting all of this without bitterness is a goal I'm often not up to, but it's my goal.

You ask about being a moderator.  When I was asked to become one, I didn't feel well enough to do an adequate job (and I still feel that way).  However, this site has saved my life.  I couldn't say, no.  It's not easy to keep up with because there are so many people in distress.  Yet when I see the great effort others are making to keep us all going, I join in to do what I can.  The kindness and compassion I see here makes me realize that it is something the drugs didn't destroy in us.  I'm glad for that.  I think it helps to heal us.  I want deeply for you to heal and not be in pain.  I admire you and all of us for surviving each day.

Thank you for joining your voice to the site, Insider,

Arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

Link to post

Had the flu and a migraine wave yesterday, I could deal with them the day before using ice, but yesterday it escalated the flu and I had to go to the ER and get Tramadol. 

 

 

 

I really couldn't bear with it this time.. It was hell.. 

 

 

 

Also, most of my symptoms disappeared on Tramadol, the chronic panic, the restless legs, the pain in my muscles and bones whenever I lay down on one side, the twitching and loss of control over muscles.. Dunno what else.. It hurts to know that I'll lose all that bless and get a relapse after the shot.. 

 

 

 

Isn't there a long term med with a similar effect that I can reinstate?! Diazepam had a similar effect but it has the tolerance issue, I suggested the cross over to Topiramate because it's a long-term med and they both work by increasing GABA, with Topiramate having other effects of calcium channel blocking and I didn't understand the third, I could be very wrong tho

 

https://go.drugbank.com/drugs/DB00273 

 

I don't know what to do TBH, my mother thinks she can manage to pay for a rehab center abroad for me for a month's period and that'd get me clean, I have a lot of doubt about that logic and the reliability of medicine. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

Hi @Outsider,

 

I really worry about the use of Tramadol, even intermittently. It is an SNRI but converts to an opioid in some people when metabolized, thus it can be addictive and it has plenty of adverse effects. The conversion to an opioid depends on an enzyme whose activity varies enormously depending on the person taking it. With low activity, you mostly get the SNRI ("antidepressant") effect, but if the activity is high, you get much more opioid activity. Here is a useful summary by toxicologist David Juurlink on why it should not be initiated.

 

I'm sorry you keep having to go to the ER, Outsider. I'm really not sure what to do about that. I think all of these meds have issues. Perhaps Topiramate is slightly better than diazepam, tough to say. 

 

Rehab is also a very bad idea, although it is the first one which springs to many people's minds. I almost went to one too and am glad I didn't. They tend to rip people off the drugs they are on very quickly and just replace them with other drugs. There are many rehab horror stories floating around on the internet. A famous one is Jordan Peterson whose akathisia was made much worse after "rehab". Unfortunately these people have the same knowledge as doctors and have no idea what they are doing. It's also very costly for almost no benefit. Really many of these places should just be shut down for their unethical treatment of people. Here is a more detailed explanation from the Benzodiazepine Information Coalition: Why Prescribed Benzo Patients Shouldn’t Go To Detox or Rehab. Applies equally to other psychotropics. 

 

Unfortunately there isn't really any good long term meds for preventing seizures. Patients tend to become tolerant to them and then have to switch. I would really hate to be a patient with epilepsy under the current system. There is a neat summary in the abstract of this article on the difficulties of pharmacotherapy for epilepsy. 

 

"Currently available antiepileptic drugs have a limited efficacy, and their negative properties limit their use and cause difficulties in patient management. Antiepileptic drugs can provide only symptomatic relief as these drugs suppress seizures but do not have ability to cure epileptogenesis. The long term use of antiepileptic drugs is limited due to their adverse effects, withdrawal symptoms, deleterious interactions with other drugs and economic burden, especially in developing countries. Furthermore, some of the available antiepileptic drugs may even potentiate certain type of seizures."

 

I would guess if you are getting pain relief from Tramadol you likely have higher CYP2D6 activity and are converting it to an opioid (O-desmethyltramadol). I would assume a genetic test isn't readily available, but typically people of Middle Eastern descent have higher CYP2D6 activity, caucasians have lower activity and African-American and Asian populations generally have very low activity. I would be very weary about using Tramadol at all. If you find yourself thinking about going to the ER to get relief with it, keep in mind this could be an addictive property of the drug at work. Drugs like this can change our thoughts and behaviors without our being aware of them. Unlikely you are already addicted, but yes, an opioid will provide some level of pleasant, temporary relief. Of course other psychotropics can do that too, but they do not necessarily orient your behavior around the drug quite as insidiously. This is all assuming you have mid to high CYP2D6 activity....

 

Sorry to be a downer, but don't think there is an easy way out of this. If I thought taking an opioid or partial-opioid long term could improve and stabilize you, I'd be all for it, but opioids tend to have similar downsides as other psychotropics, with a few adverse effects that are worse and poor long term outcomes. 

 

Honestly not sure which drug is worst or best. Drug trials and the way adverse effects are recorded make it difficult to compare one drug to another. The best way to do that would be randomized controlled trials, head to head, with an endpoint of all-cause mortality. But those are expensive and also disadvantageous to the pharmaceutical industry and the medical profession. They want to show the drugs have benefit, not harm.  So often they do just enough to show some sort of benefit but not enough to show whether the benefit exceeds the risk (because it rarely does). 

 

I can tell you benzos in general tend to be very difficult to taper, and are associated with some pretty extreme PAWS syndromes. If I had to choose one of those three, I guess it would be topiramate, but not sure how well you tolerate it. I think the best thing you can do is just stay on the current doses of each of the drugs until thing stabilize, then slowly taper. I know not the most enticing option. Sorry for the long, not-terribly-cheerful post, Outsider. I think the sooner you accept there is no easy solution, the better. Going to be a difficult fight.

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
  • Moderator

Hi @Outsider

It's good to hear from you though I'm distressed to read of how much you're having to suffer.  I hope you're getting a chance to rest.

I still believe you can get off these drugs.  Unfortunately, most clinics are not knowledgeable about how to get off the drugs you're on.  I understand that you must be feeling desperate to get out of the situation you're in.  For the time being, I suggest you avoid as much stress as possible.  It's difficult--stress is everywhere.  Avoid people, places, media that you associate with feelings of irritation.  Try to keep your nervous system cool.  

On 8/29/2021 at 1:28 AM, DataGuy said:

If the seizures are caused by medication overuse, the best thing you can do is stabilize and slowly decrease the dose.

The healthiest way to stabilize is to relax your body and mind.  It can feel like pushing a river upstream.  But I'll use a different metaphor--Pretend, as Claire Weekes suggests, that you're a ragdoll.  Soften your muscles and thoughts.  No resistance.  Soften whenever you can.  Perhaps you've looked at her work, but I'll give you the link to consider:

Dr. Claire Weekes Method of Recovering from a Sensitized ..

All my best to you,🌱

Arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

Link to post

I think something broke in me after that Tramadol shot.. 

 

Can't quite put my finger on it, but it reminds me of a similar incident long ago where I felt the same, something broke, and I still don't know what that was, I just know I was never the same, I lost something that day, and I lost another this day. 

 

I don't know what that means, I just feel like I lost all meaning in life, I'm not feeling suicidal at all, just cold. 

 

Brutally cold. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

I'm sorry to hear that, @Outsider. I hope you get some relief from symptoms soon and begin to feel more normal / less broken. I trust you mean cold metaphorically and not actual temp-wise? 

 

I think I should note that my advice to stay away from new drugs and avoid changing current drugs much is to try and stabilize things as best as possible, but also, when people have multiple rapid withdrawals, new drugs, switches etc they can develop nervous system hypersensitivity that will tend to increase the risk of adverse reaction or just plain intolerance of meds, even medications they previously had no problem with. Want to avoid that happening if possible. It happened to me near the end of my taper. Suddenly became paradoxical to diazepam, stopped taking it, since I reasoned it wasn't even helping me sleep anymore, and that was it. Still have symptoms 3+ years later (although much more tolerable). 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
  • Moderator

Dear @Outsider  I'm sorry you too are experiencing these feelings.  Others on the site, as well as myself, have suffered times of existential meaninglessness.  It's a neuro-emotion, ie, an emotion triggered and amplified by the disruption to our nervous system.  Simply doing what you're doing sounds good:  not becoming suicidal, but simply observing the feeling rising and eventually passing.  Sometimes we have to remind each other that it doesn't last.  I find it utterly wearing.  However, if a person has the mental interest, one can use this experience to investigate questions about how the mind makes meaning, and where one may want to direct one's values as we all continue to survive one moment at a time.

I send you the warmest of wishes, Insider--

Arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

Link to post

I replaced the 1 MG Diazepam at the morning with 12.5 MG Topiramate, 

No direct reactions,

 

I had to take a 25 MG Topiramate pill yesterday due to a heavy migraine wave to avoid another ER and Tramadol visit, somehow that worked and encouraged me to make this move (the pain wasn't completely gone, but it didn't escalate to a seizure or a nerve attack), tho I suffered a heavy wave of fatigue, still nothing compared to the nerve reactions 

 

I didn't take that 25 MG today, only replaced the 1 MG Diazepam with 12.5 Topiramate (half a pill) 

The total daily dosaes for thses now is:

- 2 MG Diazepam (1 pill at noon) 

- 25 MG Topiramate ( 2 half pills, 1 at the morning and 1 at noon) 

 

If I feel any reactions / withdrawal symptoms from the Diazepam cross over, I'll keep Topiramate and recover the 1 MG Diazepam 

If things go well for the next week without any issues, I'll continue to cross over until I completely switch from Diazepam to Topiramate (I'll end up on 50 MG Topiramate daily) 

 

Your thoughts are welcomed. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

I think it is a good idea to simplify things, @Outsider. I don't think there is any equivalence between topiramate and diazepam or topiramate and pregabalin, so I'm not sure it will work. But if you want to give it a try, I think it might make things a bit easier if it doesn't exacerbate your symptoms. The drugs do have sedation and anxiolytic effects in common, if not by common mechanisms. 

 

The only thing is that we normally do crossovers like that much more slowly. Over periods of weeks or months, so I would just be cautious and go a bit slower if you can. You want to avoid shocking your nervous system any more than it has already been shocked. Also, just a warning, we don't usually recommend crossovers, especially for such disparate drugs, just because it's not really certain how much you gain and it's likely to make things a bit worse. Just go slowly so that you have fair warning if things are going in the wrong direction (ie 0.25mg diazepam at a time, if you can). Since you have already switched 1mg of diazepam out, I would wait a little while to see how your system reacts before resuming the crossover. Diazepam has a very long half-life and blood levels take quite awhile to stabilize after dose changes (weeks). Also remember the last mg of diazepam might be harder than the first one you switched due to a more rapid reduction in receptor occupancy at lower doses. 

 

Hope it works for you 🤞

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
  • Moderator

How're you doing, @Outsider? Not too bad, I hope? 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
9 hours ago, DataGuy said:

How're you doing, @Outsider? Not too bad, I hope? 

Might've been a really horrible decision, maybe because of the high dose I crossed over, but I went to the ER again on Friday, with a friend who is a Doctor, I asked for a pain killed because things REALLY escalated to a nerve attack (Diclofenac) but seeing that my migraine didn't reduce by much that day and I got an attack twice at the same night where I needed to take Diazepam each, I doubt they gave me that, which resulted in exactly the scenario I've been trying to avoid (extra dose of diazepam). 

They probably gave me placebo thinking it's all in my head or something, or that I'm playing doctor, they kept saying that I should believe in them but how the hell am I supposed to do that when they keep doing things behind my back? How am I supposed to do it when they keep disregarding my pain and past experiences? 

 

Since then I'm back to the 1 MG diazepam at the morning, I took 4 MG extra on the ER day, been suffering an extreme nausea since then, always at risk of migraine and I had to up my Topiramate dose to 50 MG, barley hanging by a thread, I'm much worse, almost anything I eat triggers a nervous response and I have to throw it up at some point.. 

 

Back to square one.. Don't know what the heck to do or if I'll recover now... 

I know you've been telling me to not mess with the meds.. But I'm worried that they'll be out of reach here any moment, that I'll lose support here any moment and some day will find myself on a forced CT.. And I'm sick of trying to remember what to take on every single time I have to take a pill.. My cognitive behavior is through the mud and my "supportive circle" thinks it's "addiction" and I can just CT but I'm too scared to do it

 

It's just stress piling up from every corner.. I'm tired already.. Can I be stable a bit? Meds or not I don't care anymore 

I just don't want the need to rely on anyone, I'm sick of it. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

I'm sorry to hear this, @Outsider 😞. It is pretty rough to drop 1mg of diazepam for another drug that isn't really an equivalent. I think your best option may just be to switch back, and then hold for a very long time. It most definitely is not "addiction". If you want to show your family something, you can always direct them here https://www.benzoinfo.com/2020/04/20/one-year-off-benzodiazepines-a-doctors-journey/. There are plenty of stories of people being harmed by these drugs, including doctors like Christy Huff. Here is another good explanation for caregivers: https://benzowithdrawalhelp.com/recovery/what-we-wish-family-and-friends-knew-about-benzo-withdrawal/

 

And here is another doctor (a psychiatrist) talking about antidepressant withdrawal. Sometimes family and friends need to hear it from people in a position of authority. 

 

So you are taking: 3mg diazepam, 80mg pregabalin, and 50mg topiramate? Is that right?

 

I think at the point you are at, it is normal to feel like you are hanging by a thread. The important thing is to keep as calm as you can and try to think through each decision you make, to the best of your ability. All you can do right now is keep taking those same doses daily. If you have to go to the ER to get something, you have to go. But try to keep the same routine every day if you can. Eventually, things will settle down. I think you have tried enough experimentation to realize that that isn't going to work. Right now we just need to stabilize things and settle everything down as best we can. Initially it may involve migraine attacks occurring, being very uncomfortable, and feeling like you are teetering on a precipice, and things may get a bit worse before they get better, because of all the messing around with doses, but you are going to have to persevere through it. That is basically your option. I don't really see another one. Forcing things to go more quickly than your body can handle, I think, clearly will not work. 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
  • Moderator

Dear @OutsiderGosh, you've been going through so much.  

On 9/13/2021 at 11:46 PM, Outsider said:

It's just stress piling up from every corner.. I'm tired already.. Can I be stable a bit? Meds or not I don't care anymore 

I just don't want the need to rely on anyone, I'm sick of it. 

I hear what you're saying.  It can feel simply unbearable.  Please know during these times that I am sending you wishes for your well-being.  There have been so many days I've felt I can't go on, then somehow, I do.  For sure, we can't rush this awful experience.  I know in my heart that you can survive this and get well.  Gently.  With great kindness to the extreme effort it must take you to keep going.  (I hope my sentences are clear enough.  Your English is excellent--)  I send you

شفاء

 شفاء.

Arbor


 

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 

Link to post
22 hours ago, DataGuy said:

So you are taking: 3mg diazepam, 80mg pregabalin, and 50mg topiramate? Is that right?

Yes. 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator
7 hours ago, Outsider said:

Yes. 

 Ok, we will stick with that combination. Will you be ok to hold those doses for the next few weeks or months? Stabilizing can take quite a long time. Important to develop a routine to get through the day. Your system just need some regularity right now. It has really been jerked around. 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post
8 hours ago, DataGuy said:

 Ok, we will stick with that combination. Will you be ok to hold those doses for the next few weeks or months? Stabilizing can take quite a long time. Important to develop a routine to get through the day. Your system just need some regularity right now. It has really been jerked around. 

I'll try for weeks, for the time being.. 

 

Thanks for the thoughts, I'll reply properly when I can @arbor @DataGuy

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post

Having some withdrawal effects, upped Diazepam to 4 MG a day 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post

Pregabalin turned out to be 50 MG a day not 80 -_- there was another miscommunication with my father... 

- 2014 - 2018 >> 3 years of chaotic 4 pack prescriptions by 10 different doctors

- 2018 >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up)

- 2018 - 2020 >> withdrawal effects for 3-ish years, slight recovery after the long fight

- 09/2020? or so >> was put back on Seroxat, lowest dosage but don't remember how much [will update when possible]

- 11?2020 >> Seroxat replaced with Amitriplatine and getting stuck with 10 MG dosage, getting seizures if I go off

- 01/2021 >> Amytriptaline reduced to 5 MG

- 23/01/2021 >> Amytriptaline quit CT, severe withdrawal for a week but went down after

- 23/02/2021 Diagnosed with Occipital Nerve infection because of the withdrawals mess

- 02/2021 - Diazepam 5mg per day

- 06/2021 - 100mg Pregabalin

- 07/2021 - 25mg Topiramate

August:

80mg Pregabalin, Split into 4 doses per day 

Diazepam every 12 hours (1mg at 6 AM and 2mg at 6 PM)

50mg topiramate

 

September/October 2021 attempt to stabilize:

 

10 MG Diazepam 

50 MG Pregabalin 

75 MG Topiramate 

 

Oct 15th 2021: 

Pregabalin (calculated this time,it's the dose I thought it was 80): 26.6 MG split into 4 doses at 6:00 AM, 12:00 PM, 6:00 PM and 12:00 AM

- Diazepam : 10 MG at 6:00 PM

- Topiramate : 100 MG at 6:00 AM (5th day, was 75) 

Link to post
  • Moderator

Ah ok, @Outsider. That could definitely have been a significant source of problems. 

Remeron - 2004-2005 (bad withdrawal)

Clonazepam - 2005-2018 (jumped around March)

Olanzapine - 2014- late 2017

Domperidone - 2008-2018

Many drugs in between including Lexapro, other benzos and z-drugs.

Still suffering post-withdrawal from Clonazepam (Klonopin), Olanzapine and Domperidone. 

Link to post

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