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

[Outsider]

22 hours ago, DataGuy said:

I don't know about getting prescriptions in other countries, unfortunately. I do know doctors in most countries are pretty bad when it comes to psych drugs. There isn't really a good place when it comes to that. There could be a place where it is easier to get a prescription, but I really have no idea where that would be. 

 

I'm sorry about the stomach infection @Outsider. Hope it is getting better. What is your tapering plan for the diazepam? Have the doctors given you one? 

 

Do you think you could update your signature? Are you only on diazepam now? 

 

Very happy you got rid of the nerve attacks. So you are better off now without the opioids, triptans and pregabalin? Those are basically all meds used for various types of pain...benzos are sometimes too. 

 

I only got rid of them when I increased the dose, but another fast taper will bring them back, and I'm being pressured into it.

 

The stomach infection itself is gone but I'm still having the old issues listed here earlier

 

Can't update my signature because I don't have any access to a computer,and while nerve attacks are gone, migraine and extreme exhaustion are still there

 

I'm not asking for local doctors in some country, I was actually asking for the possibility of an online diagnosis and prescription, is it available?

[DataGuy]

It probably is available in some place. There was a company recently that got busted for doing that: "Cerebral", in the US I believe. But it may be common in other countries. I don't know if that company operates internationally. But it's not uncommon to see ads on social media offering to diagnose and treat people via telemedicine. I honestly have no idea if those companies are legit. It's a very sketchy area to begin with. 

[Outsider]

On 7/1/2022 at 4:12 PM, DataGuy said:

It probably is available in some place. There was a company recently that got busted for doing that: "Cerebral", in the US I believe. But it may be common in other countries. I don't know if that company operates internationally. But it's not uncommon to see ads on social media offering to diagnose and treat people via telemedicine. I honestly have no idea if those companies are legit. It's a very sketchy area to begin with. 

 

I see

It does make sense that it feels sketchy 

Tho it also seems like a possibility for people like us

 

However, looks like it's not a very good idea to take a risk unless it's something certified at least. 

[Outsider]

I know I've disappeared for long

I've been trying to hold the 9 MG Diazepam until I stabilize

 

But recently I'm getting random (or what seems to be random) nerve attacks? I'm taking the med at the same time every day,  same dose, but I might be pushing myself more physically because I got a little more energy.

 

The problem remains the same, it's too hard to pinpoint my symptoms and take note of them, I'm like, always unconscious in a way, and the minimum amount of typing takes a lot of effort and focus, let alone when I am feeling the symptoms.

 

I'm still willing to try, what's the simplest method to record them so I can know what to do?

 

I was in the hospital yesterday because of a health crash, I could only remember a mix of an unbearable pain in my stomach and my shaky hand completely losing feel, also throwing up just to throw up again in a matter of seconds without having anything in my stomach.

 

9 MG Diazepam

100 MG Topiramate

 

That's what I'm on right now 

[ChessieCat]

Example:

DATE:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

[DataGuy]

Just have to work over the next few days @Outsider, but will get back to you at some point. I'm sorry you're still suffering, but very happy your still around : )

[Outsider]

3 hours ago, ChessieCat said:

Example:

DATE:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

Thank you, but there are symptoms lasting all day that I'm having a hard time identifying, because I'm kind of "used to them"?

Is there a list of common symptoms or something (a long one) that I can check myself with and see which I have and which I don't and to what degree?

 

This simple method also seems like a good idea, how to use it? Like when to log? When I feel a change or do something or...?

 

Thanks again!

 

@DataGuy thank you for passing by, I'll be waiting 

[ChessieCat]

The main thing to note are how you feel before you take a drug and how you feel after taking it.

 

Please read this post which explains it more:

 

 

[ChessieCat]

9 hours ago, Outsider said:

This simple method also seems like a good idea, how to use it? Like when to log? When I feel a change or do something or...?

 

You need to do this every day for at least 3 days.  Post a full 24 hour period at one time with the date at the top.  This way it is easier for the staff to compare the days.

 

Keep it simple.  If you want to add more information, add it at the bottom.

[ChessieCat]

Q:  Have you managed to do any daily symptom notes?

[DataGuy]

On 3/28/2021 at 1:09 AM, Outsider said:

I know I'm too late to respond but a lot happened. And I need some guidance again

 

One day (23/Jan) I just couldn't take it anymore and CTed Amytriptyline. 

 

I attached an image with my symptoms state a couple of weeks after CT (the Grey dots are symptoms that were frequent but I didn't notice at that time because they were frequent, I added them later) 

 

Then I started getting migraine-like waves for days more intensely than ever, thankfully I bumped into a good neurologist and got diagnosed with Occipital nerve inflammation. 

 

Doctor said it's caused by withdrawal, gave me suppliments only (Zinc, Calcium and some other stuff, will list them as soon as I can) 

 

The problem is that the nerve triggers nervous attacks especially on light or sound stimulation, it's too hard to use screens for more than 5 minutes unless I take Diazepam or something similar (went to the ER a few times and that's what they gave me, the doctor gave me a similar thing to deal with it, Clonazepam) 

 

And it's not always triggered by stimuli, at many times it just builds up to a nerve attack 

 

By nerve attack I mean:

- Heavy nausea

- Heavy trembling and fatigue 

- Difficulty speaking, at many times my jaw shakes on its own as it would if I was cold, if that escalates then I start saying weird things in a pattern of "Tatataaashadada.." or so

- Extreme pain, too difficult to define where through all the chaos but the nerve being on fire is the clearest painful place, all the way from around my eyes back to my neck and then the top of my stomach

- runny nose, comes heavy, don't know why

 

This usually starts to come back after 2 days of taking 5 MG of Diazepam, I only took it on 4 occasions during the past couple of months and tried to power through the rest, but I don't think the attack calmed down on its own, it gets heavy /unstoppable on the 3rd/4th day after Diazepam and maxes out the next day when Diazepam 5 MG at least is needed

 

 

So now I'm stuck.. Face the agony hoping it'll be gone soon? Or try to get on "safe" dosages of Diazepam to help my brain recover faster? 

 

Because I was put on Clonazepam, Alprazolam and Lorazepam at some point of my life as far as I remember, just don't remember when, and I remember I was carelessly CTed over and over, the symptoms I have now during my nerve attacks are the same symptoms I had the past years, but with 2 major differences:

1. The ones I had in the past were more intense and almost all day, I used 2 MG of Diazepam at times to calm it down but with the limit of 3 doses a day no more, powered through most of them

2. Although less intense now, the runny nose and extra pain (nerve pain included) are new and much more intense than before

 

It's too hard to focus, if I forgot to explain something please ask me about it, what should I do now? Is there a safe way to use Diazepam? 

 

 

I forgot a few things :

- doctor prescribed codeine phosphate for pain management, while looking I found that I shouldn't take it with any (benzo?) like Diazepam because it could cause the breathing to stop while sleeping or to not wake up 

- I keep getting up with a mild - moderate nerve attack under sunlight, also feel dehydrated

- My symptoms (or my sensitivity to them) was reduced by half when I noticed I was severely dehydrated (2 cups of water a day or less, might not even drink at all) and countered it, but it's still too hard to do so because I'm too nauseated to drink water + I keep forgetting it

- I noticed that I don't get the attacks and I'm not very sensitive to food when I'm in a fasted state after 14 hours at least off food, it makes a LOT of difference, normally it's too hard to stand the sight or even the talk about food, anything oily/fat, thick, or has synthetic substances / fibers triggers a mild to severe nerve attacks, lasts until I throw them up or until 1-2 days ahead, 90% of the time I just throw up to save myself the agony, but when fasted, the first meals never trigger that sort of thing and I'm usually calmer, feeling better in general until I eat. 

 

Also, I managed to read and check a bunch of the stuff you sent me, I'm very grateful, they saved me multiple times over. 

 

The "What's happening in your brain?" one especially felt too relatable 

 

 

 

Hi @Outsider,

 

I've quoted one of your early posts here, where you filled out a symptom checklist. You could always try to use this again if you cannot handle the daily notes (or you could try to do both). 

 

I think it would be good if you read over your post and tell us if you think you have made progress. (I think you have?). 

 

Interesting thing you wrote here: 

"I noticed that I don't get the attacks and I'm not very sensitive to food when I'm in a fasted state after 14 hours at least off food, it makes a LOT of difference, normally it's too hard to stand the sight or even the talk about food, anything oily/fat, thick, or has synthetic substances / fibers triggers a mild to severe nerve attacks, lasts until I throw them up or until 1-2 days ahead, 90% of the time I just throw up to save myself the agony, but when fasted, the first meals never trigger that sort of thing and I'm usually calmer, feeling better in general until I eat."

 

Have you continued fasting at all? I actually have a very similar benefit from fasting...similar time frame and everything. But then of course you have to eat, but it is a nice reprieve for a couple hours or so. And helps to add some predictability and stability to your schedule. 

 

It's great that you have a bit more energy. When did that start? You said you were pushing yourself...did you mean exercising? Do you find exercise helps your symptoms? 

 

How long ago did the nerve attacks start up again? I think you should continue holding if you can. You'll continue to get waves and windows of course, but the waves should slowly diminish with time. Try and resist the urge to change things if symptoms flare up. It sounds like you were doing a bit better before that? 

 

I'm sorry about the hospital experiences. They sound terrible 🙏 

[ChessieCat]

Post #1 of this topic has links to one month computer and printable versions of the Glenmullen symptom list.  I created these not long after I joined SA:

 

Dr Joseph Glenmullen's Withdrawal Symptoms

 

Edited November 17, 2022 by ChessieCat

[Outsider]

I keep failing to get back here and update, it's gotten too chaotic, I'll try.

My current state on meds:
- 9 MG Diazepam
- 100 MG Topiramate
- 0.5 MG Codeine Phosphate (every 4 hours)  
the last one is new and I had to use it after getting flu, tried to taper but got stuck on the 0.5, too hard to taper further because of my constant lack of conciosuness.

I know I'm too late but
 

On 11/16/2022 at 6:17 PM, DataGuy said:

Have you continued fasting at all? I actually have a very similar benefit from fasting...similar time frame and everything. But then of course you have to eat, but it is a nice reprieve for a couple hours or so. And helps to add some predictability and stability to your schedule. 

 I kind of forgot within this mess, but I'll have to get back to it, though right now I'm struggling with malnutrition, I don't have much say in what I eat and when I eat it because it's too hard for me to get up (takes hours for me to push myself for it, and I'd be barely able to see or recognize my surroundings, hardly breathing or standing, nausea too, so if I could make food it would be something very simple and most often not filling, even a sandwich is hard to make)
Family is getting pushy as in "You'll never get better so just tough it out" instead of helping, or too caught up in the situation here to bother

I tried logging my symptoms but, while having them it's too much pain to actually use a phone, talk or move to write/type, or get near lights, and after them I would have already forgotten them, same goes for meds, I actually need an alarm for my meds to not forget, I forget everything no matter how intense in matter of seconds, I can just remember "it was agonizing" or something like that, but not the details

 

 

On 11/16/2022 at 6:17 PM, DataGuy said:

It's great that you have a bit more energy. When did that start? You said you were pushing yourself...did you mean exercising? Do you find exercise helps your symptoms? 

It started when they finally stopped messing my med doses and trying to force CT them (doctors and family), I had a couple of months to stabilize on the same brand and dose i guess, still on it, getting better with time, but still very slow progress, however, I'm very weak already, for example, like I said, I'm more energetic but it's relative, I'm not energetic or strong enough to get up from the mattress at will, so to answer your 2nd question, I mean pushing myself just to do what's necessary to live, not to exercise because that's too out of reach at this moment.

 

 

On 11/16/2022 at 6:17 PM, DataGuy said:

How long ago did the nerve attacks start up again? I think you should continue holding if you can. You'll continue to get waves and windows of course, but the waves should slowly diminish with time. Try and resist the urge to change things if symptoms flare up. It sounds like you were doing a bit better before that?

Since the Amitriptyline withdrawal I guess? but what made it worse was the constant updosing and CT attempts by the doctors here since I'm always under the mercy of their prescription

 

 

On 11/16/2022 at 6:17 PM, DataGuy said:

I'm sorry about the hospital experiences. They sound terrible 🙏 

Thank you, since then and I'm avoiding the nerve attacks.

 

 

On 11/16/2022 at 7:12 PM, ChessieCat said:

Post #1 of this topic has links to one month computer and printable versions of the Glenmullen symptom list.  I created these not long after I joined SA:

Appreciated, I'll check and try to use it

[DataGuy]

Glad you are back @Outsider. Will take a look at things in the next few days when I am less busy. Hang in there.

[Outsider]

6 hours ago, DataGuy said:

Glad you are back @Outsider. Will take a look at things in the next few days when I am less busy. Hang in there.

Thank you, no problem, I'll try to define my symptoms more accurately in meantime 

[Outsider]

Regarding this, I'm not sure how to approach it

http://survivingantidepressants.org/index.php?/topic/2390-dr-joseph-glenmullens-withdrawal-symptom-checklist/

I kinda have all of them all the time except nightmares (I don't always dream or fully sleep) , Excessive dreaming for the same reason, and diarrhea 

 

The difference is the intensity I guess, and it varies a lot throughout the day for some, should I try and use a scale on 1-10 for the more permanent ones? And when to log them during the day?

[DataGuy]

Hi @Outsider,

 

Sorry things are still so rough. Whenever you feel is the best time for you to log them is probably fine. Ideally you'd log them at the same time every day, but I know that may not always be possible. Yes, you can use a 1-10 scale for each symptom. 

 

I am wondering if the diazepam is really helping or if it is hurting you? It sounds like you are very sedated and benzos are not supposed to be taken for more than a few weeks. They are neurotoxic drugs, similar to alcohol. I am worried that you have so much trouble getting up off the mattress. What do you think about tapering the diazepam? You can do it at your own pace, obviously, but this level of sedation is not healthy. Benzo withdrawal is certainly awful, but it may be better than what you are currently experiencing. It is up to you. It is a difficult quandary to balance the harms of coming off with the harms of staying on the drug, but I think you need to at least be able to get up and walk around. It's important to note that long term benzos have very established harms and no known benefits to health (they are not even really good for seizure prevention in epilepsy).

 

I think you need to reduce the drug enough so that you wake up a little, even if it is painful. You can do it at a manageable pace, but you can't allow the current situation to persist. The longer you remain on the drug, the longer it may take to reverse the changes. The best solution is to come off slowly. It is better to be a bit more functional and awake and able to care for yourself than to be in such a heavy daze that you can barely get up or prepare meals. What do you think? Am I off base? 

[DataGuy]

It may help to watch/listen to this interview, @Outsider, where two doctors who have tapered many patients off these drugs talk about what they have seen. Josef Witt-Doering mentions around the 18:30 mark how patients can take benzos for years and then start to develop neurological symptoms like pain and paresthesia, similar to how patients who remain on antipsychotics for long periods will begin to develop tardive dyskinesia, a sort of cumulative, dose-dependent toxicity syndrome that can take a long time to recede after tapering and abstinence from the drugs. 

 

Avoiding this problem, along with being less sedated throughout the day, might be another benefit to slowly tapering the diazepam. 

[Outsider]

On 3/7/2023 at 7:41 PM, DataGuy said:

 

I am wondering if the diazepam is really helping or if it is hurting you? It sounds like you are very sedated and benzos are not supposed to be taken for more than a few weeks. They are neurotoxic drugs, similar to alcohol. I am worried that you have so much trouble getting up off the mattress. What do you think about tapering the diazepam? You can do it at your own pace, obviously, but this level of sedation is not healthy. Benzo withdrawal is certainly awful, but it may be better than what you are currently experiencing. It is up to you. It is a difficult quandary to balance the harms of coming off with the harms of staying on the drug, but I think you need to at least be able to get up and walk around. It's important to note that long term benzos have very established harms and no known benefits to health (they are not even really good for seizure prevention in epilepsy)

Diazepam isn't helping me with anything other than holding back its own withdrawal symptoms, 

however the reason why I think it's NOT why I'm feeling sedated: when I used codeine it felt refreshing, not much pain, lighter, more concious and I could get up a lot easier, the same kinda can be said about triptans but with more side effects and it was less refreshing.

 

Do you think it's my nervous system being exhausted from all the rapid/sudden changes in doses and meds rather than the benzos itself and it just couldn't adjust yet?

 

Also I don't know how much I'm affected by Diazepam now, I know I've been on heavier benzos but I didn't want something heavy.

 

 

Regarding the taper, it's not about the pain as much as it's about risking my life, the last few times I had migraines (evolved to nerve attacks) NOTHING stopped them except a overdose of triptans and codeine, and the last visit to the hospital I have no idea what one of the doctors gave me after 2 days of exhiritaling pain, the doctor probably didn't know either but was experimenting.

it was probably sheer luck that I survived, and during a whole night screaming in pain, not knowing what's wrong in what felt like is the end, while doctors are acting like it's psychological.. I don't think I want to count on that luck again. 

 

That's why I want to be fully stable before tapering Diazepam, just make sure that my head isn't affected by temperature changes at least, it's VERY sensitive to that.

[DataGuy]

Will get back to you in the next few days, @Outsider, just busy dealing with some stuff right now. 

[DataGuy]

Did you listen to the interview, @Outsider? I'm not sure you will ever quite feel stable on diazepam. People can take it for a long time and never stabilize, which results in them taking it for years and years waiting for something that isn't going to happen. Benzos have a similar mechanism of action to alcohol. They are both neurotoxic and as mentioned by Dr. Witt Doering, taking them long-term can result in a sort of dose dependent syndrome that can have a large array of symptoms, much like long term antipsychotics can result in tardive dyskinesia or dystonia. By all means, get as stable as you can before tapering, but I would not expect to ever feel comfortable. Some symptoms may improve, but you can also develop new symptoms from long term use. 

 

What I think is happening (just a guess), is that your nervous system has been sensitized from going on and off many different drugs (while already in a withdrawal state), and even though 9mg is not a huge dose, your system is sensitive enough that it produces a strong sedative effect, which helps to explain why it is such a huge effort to get up and make any sort of meal, and likely also explains your problems with food and gastroparesis like symptoms.

 

I think the best strategy is a very slow reduction of the drug. Maybe start with 5% per month, and continue reducing like that until you are more awake and functional. Hopefully that leads to a bit of an improvement in your gastrointestinal function as well. You don't need to taper it all the way, but reducing it slowly in a controlled manner should help you eventually feel a bit better and be a bit more functional. Eventually. But the longer you remain on these drugs, the longer the recovery period will be when you are finally off everything. Receptor adaptation after cessation can take quite a long time. Syndromes like tardive dyskinesia and tardive akathisia can persist for years after stopping the drugs.

 

It might be useful to try to book an appointment with a doctor like Dr. Witt-Doerring. I am not sure if he sees international clients, but if he does it may be useful to have him explain exactly what is going on to your family. Tapering and recovery is going to be quite a long process, and it's important to have your family on board with it, which means understanding that it is not just a psychological problem. If Dr. JWD can't see you, perhaps he can recommend someone who can and will provide some validation for what is happening. 

Edited March 16, 2023 by DataGuy

[Outsider]

On 3/16/2023 at 5:44 PM, DataGuy said:

Did you listen to the interview, @Outsider? I'm not sure you will ever quite feel stable on diazepam. People can take it for a long time and never stabilize, which results in them taking it for years and years waiting for something that isn't going to happen. Benzos have a similar mechanism of action to alcohol. They are both neurotoxic and as mentioned by Dr. Witt Doering, taking them long-term can result in a sort of dose dependent syndrome that can have a large array of symptoms, much like long term antipsychotics can result in tardive dyskinesia or dystonia. By all means, get as stable as you can before tapering, but I would not expect to ever feel comfortable. Some symptoms may improve, but you can also develop new symptoms from long term use. 

 

What I think is happening (just a guess), is that your nervous system has been sensitized from going on and off many different drugs (while already in a withdrawal state), and even though 9mg is not a huge dose, your system is sensitive enough that it produces a strong sedative effect, which helps to explain why it is such a huge effort to get up and make any sort of meal, and likely also explains your problems with food and gastroparesis like symptoms.

 

I think the best strategy is a very slow reduction of the drug. Maybe start with 5% per month, and continue reducing like that until you are more awake and functional. Hopefully that leads to a bit of an improvement in your gastrointestinal function as well. You don't need to taper it all the way, but reducing it slowly in a controlled manner should help you eventually feel a bit better and be a bit more functional. Eventually. But the longer you remain on these drugs, the longer the recovery period will be when you are finally off everything. Receptor adaptation after cessation can take quite a long time. Syndromes like tardive dyskinesia and tardive akathisia can persist for years after stopping the drugs.

 

It might be useful to try to book an appointment with a doctor like Dr. Witt-Doerring. I am not sure if he sees international clients, but if he does it may be useful to have him explain exactly what is going on to your family. Tapering and recovery is going to be quite a long process, and it's important to have your family on board with it, which means understanding that it is not just a psychological problem. If Dr. JWD can't see you, perhaps he can recommend someone who can and will provide some validation for what is happening. 

 

Sorry again for the late reply, here's what happened:

 

I mentioned the hospital from Trying to quit the triptan right?

 

Right now I'm on:

- 4 MG Codiene Phosphate (every 4 hours)

- 1.25 MG Zolmitriptan (also every 4 hours)

I have to taper them, I wonder if I can go about them the same way as antidepressants based on their half life, but trying to cold turkey will just lead to hospital like last time

I was away because I got the flu and it hit hard

 

Regarding the video I watched what I could, I think I'm intoxicated like you said, there's also a case he mentioned that striked me, that guy who couldn't eat without the opioid, I'm not at THAT level yet but I'm very similar, it's too hard to eat, to breathe, and I seem to have chronic fatigue but it's relative to the benzo, the opioid did help when I took it but I don't want to add to the pile, not when I'm this sensitive. 

 

however by stabilizing I just meant stable symptoms, they always went up and down because doctors and family kept experimenting with my dose, that issue is supposed to be solved now, but I'm stuck with the codiene and the triptan

 

One more thing, since the hospital and the skin of the top of my foot feels numb, it actually lost sensation, I also lost some control over movement there, it gets worse with cold, I'm not entirely sure but seems like a nerve issue because a nerve in my knee stings when Imove it at times, not painful enough to hurt much but it's noticeable, above the knee I don't have an issue. 

 

I'm worried about checking a neurologist and getting told "you have to CT Diazepam" then fall in the whole rollercoaster again, I'm walking on thin ice.

 

For recording my symptoms I didn't manage yet because of the flu, I'll try starting today, sorry about it, too hard to be conscious 

Edited April 11, 2023 by Outsider

[DataGuy]

I think my advice is the same as usual, @Outsider. Slow, steady, tolerable reductions, holding when you need to, avoiding adding drugs when possible. If you do add drugs, best to not just keep taking them.

 

For the codeine and triptan, I would get rid of whichever one you've been taking for the least amount of time, first, then get rid of the other, both through a tolerable, symptom-based taper. So yes, same approach as tapering antidepressants. 

 

For the diazepam, if you can get off it, you definitely have a good chance of recovering. In one of the few studies on the issue, Dr. Ashton found that more than 70% of patients had a good outcome within 3 years of stopping. https://www.benzo.org.uk/ashbzoc.htm

 

Some in this study had severe neurological symptoms as well. One was diagnosed with multiple sclerosis (it was a misdiagnosis of benzo wd symptoms), some had severe gastrointestinal issues, others had constant burning pain in their hands and feet. Seems most of these issues were caused by the drug, and most recovered once off (some in less than 3 years). I think you just need to make a plan and stick to it.

[DataGuy]

Still thinking of you @Outsider and wish you could find some good medical support. Hope things have improved a bit 

[Outsider]

On 6/16/2023 at 3:31 PM, DataGuy said:

Still thinking of you @Outsider and wish you could find some good medical support. Hope things have improved a bit 

Thanks a lot, it's still rough, I think I have Chronic Fatigue

 

Also I'm getting pushed a lot for physical activity when I'm in a condition for it, and that's breaking my recovery 

 

Sorry for not being active, I'm trying to tackle things and make more progress before I get back but it's too hard

 

 

 

I had a sudden weird flare a while back (I think like a month or more?) Of Topimate's withdrawal symptoms, despite not changing the dose, I'm still not sure what was the cause

 

I had to updose to 150 MG because of it, was too hard to find out that the cause was Topimate not Valium too

Though I did manage to taper it down to 125 MG, I can probably taper it to 100 again but I'm trying taper Zolmitrptan first.

 

I couldn't cut it down by half so now it down by like 30%

 

Still trying to stabilize, also I'm wondering if I can space out the time between doses to 6 hours instead of 4 because it's becoming too hard to wake up multiple times for that, I'm worried about the half life though

 

 

And I'm still having to resort to 5 MG pills many times (some of them because I have to push myself, situation and all, but rare others are withdrawal)

 

So there's that 

 

I'm taking a third of a 2.5 MG Zolmitriptan pill every 4 hours rn

[Outsider]

On the + side, I had some positive improvements in terms of mentality 

 

Physically I'm the same more or less,

Diazepam is stable

Topiramate lost control but I got it back 

Zolmitriptan and Codiene are what I'm trying to tackle

 

Extreme Chronic Fatigue (apparently), probably caused both by withdrawal and pushing myself over the years, and it's too hard just to get up, think, move or even manage the smallest human functions 

 

But I'm alive and I managed a few things

 

So the mentality shift was realizing how much I managed despite my comical disadvantages, reminded me that I have control if I take things veeeeery slowly and one simple thing at a time

 

Probably gonna be much tougher and more chaotic/blind than others but still better than nothing

 

 

Right now I'm thinking about simply dissolving a tablet in a water bottle, taking out 1 ML more every day, and that's how I'd taper my first med

 

Or something that simple/ accessible to me

 

It's very hard to move/think, so I want something that can be done in a minute(preferably less, I'm struggling to get one meal a day) and once a day, without much thinking, and taken immediately in one go, that's my capacity. 

[DataGuy]

Will respond a bit later @Outsider, just busy the next few days. Glad you are hanging in there.

[DataGuy]

I'm glad you are feeling a bit more positive, @Outsider. Chronic fatigue or chronic fatigue syndrome usually occurs as a post-viral syndrome (like long covid). Your fatigue is likely due to the fact you are taking multiple sedation-inducing medications. Once you reduce the dosages, you should feel like you have a bit more energy. 

 

Is this the correct daily dosages for your medications? 

9mg diazepam

125mg topiramate

0.83mg zolmitryptan every 4 hours

Codeine ??mg

 

As I think I have mentioned before, it's important not to updose when you have an uptick in symptoms. Everyone experiences waves and windows of symptoms and although they may be scary, they typically resolve with time. When you first came here, you were on something like 5mg of diazepam. Now you are on 3 other meds and 9mg of diazepam. This is not exactly progress. I'm not trying to be too critical or harsh, but you need to recognize what has happened historically with this updosing strategy for symptoms. It's great that you are still alive, but you also likely would have remained alive had you simply stayed on 5mg of diazepam that was started back in 2021. 

 

I can't claim to know the best way to treat the nerve attacks, but it does sound like some sort of wave-like withdrawal symptom. I hope you can find some non-drug method of treating it, because the updosing strategy has simply resulted in a proliferation of drugs and revolving door of polypharmacy. 

 

I still think the best strategy is to taper each drug slowly, one at a time, and if you have an uptick in symptoms, to pause and hold until the symptoms abate. Chasing short-term symptom relief has been a disaster, not just for you, but for many, many people throughout history. It's something that plays out over the long term, and while the patient thinks they are helping themselves get through things, the reality is they are slowly deteriorating. These meds are tested for safety over the short-term for use over a period of months, not years. It's best to get off this treadmill while you are still able to control the meds and pace of reduction. You definitely don't want someone else doing it. 

[Outsider]

On 7/4/2023 at 9:00 PM, DataGuy said:

I'm glad you are feeling a bit more positive, @Outsider. Chronic fatigue or chronic fatigue syndrome usually occurs as a post-viral syndrome (like long covid). Your fatigue is likely due to the fact you are taking multiple sedation-inducing medications. Once you reduce the dosages, you should feel like you have a bit more energy. 

 

Is this the correct daily dosages for your medications? 

9mg diazepam

125mg topiramate

0.83mg zolmitryptan every 4 hours

Codeine ??mg

 

As I think I have mentioned before, it's important not to updose when you have an uptick in symptoms. Everyone experiences waves and windows of symptoms and although they may be scary, they typically resolve with time. When you first came here, you were on something like 5mg of diazepam. Now you are on 3 other meds and 9mg of diazepam. This is not exactly progress. I'm not trying to be too critical or harsh, but you need to recognize what has happened historically with this updosing strategy for symptoms. It's great that you are still alive, but you also likely would have remained alive had you simply stayed on 5mg of diazepam that was started back in 2021. 

 

I can't claim to know the best way to treat the nerve attacks, but it does sound like some sort of wave-like withdrawal symptom. I hope you can find some non-drug method of treating it, because the updosing strategy has simply resulted in a proliferation of drugs and revolving door of polypharmacy. 

 

I still think the best strategy is to taper each drug slowly, one at a time, and if you have an uptick in symptoms, to pause and hold until the symptoms abate. Chasing short-term symptom relief has been a disaster, not just for you, but for many, many people throughout history. It's something that plays out over the long term, and while the patient thinks they are helping themselves get through things, the reality is they are slowly deteriorating. These meds are tested for safety over the short-term for use over a period of months, not years. It's best to get off this treadmill while you are still able to control the meds and pace of reduction. You definitely don't want someone else doing it. 

I understand that, I'm not seeking symptom relief, I just believe it's life threatening and I'm unable to describe it

 

The "nerve attack" builds up to endless seizures or something like that, nonstop, I don't remember what someone gave me the first time to stop it (was a different med, something strong, psychiatric med)

 

The next 2 times I had to take the same med myself in secret to stop the situation from escalating and I didn't even know how I managed it when I was throwing up continuously with literally nothing in my stomach, all my body acting up, everything in indescribable pain, for HOURS of agony, and I don't know how I am still alive.

 

I don't think this is something to risk, even if it is, I'm not willing to go through it 24/7, let alone that it's impossible to eat, drink or function in that state (provided that I'm already struggling with that) in case I manage all the pain and symptoms. 

 

It is not a joke, and not something I'm taking to feel better, I gave up on that long ago, I'm just phasing in and out of conciousness all day, half drunk/half asleep in pain all day and I accepted that as a part of my life, what I'm trying to avoid is absolute torture 24/7 or risk of my life.

 

Also while I was stuck with these meds, it's because I was forced on them by doctors, constant abrupt withdrawals forced by them, and the resulting reactions from my body, most of it was out of my hand, and most of the withdrawals were prescriptions cut off me, also given to me at hospitals carelessly or so, Topriamate was by a neurologist and forced by family, it took me too long until I reached a remotely stable state where they aren't messing with my dose a lot.

 

 

I hate these meds, I get your point, if I could just burn them and forget them I'd gladly do, I even forget to take them and then get a nerve attack, it was a huge mess, most forced on me and now I have to deal with it.

 

On the + side I'm supposed to be settled now, at least in terms of Diazepam and Topiramate they aren't threatening to take it away any moment unless they disappear from the country (it is possible, meds are disappearing, but it hasn't happened yet)

 

For the other two I'm taking them in secret, trying to reduce the dosage.

 

Codiene is 4 MG every 4 hours

 

And you're not being harsh by telling me that I'm stuck on meds, I'm aware, but for the cause, a lot of it wasn't in my control and that's a fact.

[Outsider]

Is stretching out the time between zolmitriptan/codiene doses from 4 hours to 6 a bad idea?

 

It's very hard to sleep when I have to wake up every 4 hours, but their half life seems to be 3 hours, also if I stretch to 6 it's a dose reduction on its own, once I stabilize on that I can continue with the taper.

[DataGuy]

Sorry, was at work for a few days, @Outsider.

 

That was a good response. I tend to forget everything that has happened because it has been so long and so convoluted. I do think you would have been better off simply remaining on the diazepam, but I realize the medical guidance is rarely competent when it comes to problems like this. 

 

I think it is worth a try to stretch it to 6 hours. Then during the day you can go back to 4 hours, but it will result in a temporary reduction in blood levels of the medication. We wouldn't normally recommend this, but people do taper drugs with short half-lives (like Z-drugs) without switching to drugs with longer half lives.

 

I think if you are experiencing the nerve attack/seizure like activity, it is best to only updose with one medication and leave everything else alone. A 50% increase is quite substantial, and I hope you can get by without increasing quite that much. You are probably right to use the topirimate, since this drug is actually approved to treat seizures, but I think it might help to get a more accurate characterization of these attacks. I know you have described them before, but can you fully describe what the symptoms are, when they come on, how long the symptoms last, and that typically happens and what your response is when they begin to manifest?  I don't want to speculate or anything, but I wonder if it is something like neuroleptic malignant syndrome or its cousin, serotonin syndrome. I don't think either of those diagnoses would make sense in this case, but I wonder if it is something similar. 

[Outsider]

5 hours ago, DataGuy said:

Sorry, was at work for a few days, @Outsider.

 

That was a good response. I tend to forget everything that has happened because it has been so long and so convoluted. I do think you would have been better off simply remaining on the diazepam, but I realize the medical guidance is rarely competent when it comes to problems like this. 

 

I think it is worth a try to stretch it to 6 hours. Then during the day you can go back to 4 hours, but it will result in a temporary reduction in blood levels of the medication. We wouldn't normally recommend this, but people do taper drugs with short half-lives (like Z-drugs) without switching to drugs with longer half lives.

 

I think if you are experiencing the nerve attack/seizure like activity, it is best to only updose with one medication and leave everything else alone. A 50% increase is quite substantial, and I hope you can get by without increasing quite that much. You are probably right to use the topirimate, since this drug is actually approved to treat seizures, but I think it might help to get a more accurate characterization of these attacks. I know you have described them before, but can you fully describe what the symptoms are, when they come on, how long the symptoms last, and that typically happens and what your response is when they begin to manifest?  I don't want to speculate or anything, but I wonder if it is something like neuroleptic malignant syndrome or its cousin, serotonin syndrome. I don't think either of those diagnoses would make sense in this case, but I wonder if it is something similar. 

I'll try stretching at night only then, see how I react to it, thanks for the recommendation. 

 

I don't think updosing is possible but I'm stable as long as nothing debalances my nervous system, (any illness or any med related to the nervous system, or any trigger for migraine which escalates to those seizures)

 

To exactly describe the symptoms I'm gonna need a list/reference because every time I try I fail, should I use the one you gave me and try to explain with examples from it? Language barriers and my normal state is also too unconcious to "detect" abnormalities in my body unless they become too extreme.. like to the point I can't move or something.

 

Because I read other posts on the website and I'm like "but I barley notice these stuff" and I check if I have them, most of the time I do but they don't even bother me anymore, I have more painful things to worry about.

 

For my own symptoms, they start with a migraine, and a sharp pain in the middle of my chest(kinda like a burn), builds up (according to how I checked previously but very hard to describe) seizures, continuous, they never stop, I don't pass out but entire body rages and I don't have control, hardly do, very painful, mostly vomiting unable to speak, it's the closest to serotonin syndrome, anyway, NOTHING stops that except something that relieves the withdrawal, like if the cause is a missing dose of Diazepam then only Diazepam can stop it, but this happened 4 times only so far, I avoided it as much as possible (which is why I'm stuck on the other 2 meds)

And in one of them the cause was probably Diazepam but giving more of it didn't stop the seizures, I have no idea what they gave me to stop it in the hospital but it was after like 20 hours of seizures, pain, screaming and them just dealing with it as a casual panic attack.

 

As for how doctors deal with it, they mostly dismiss as a panic attack, or over drug me with diazepam, whatever the case is, I DON'T want to be under their mercy.

 

 

[DataGuy]

Yes @Outsider, it might be useful to use the symptom list provided before. You might also look at this list about serotonin syndrome to see if any of these symptoms fit. Not that I think it is serotonin syndrome, but it just might be helpful as a list to work off of. 

 

I think it is best to describe how these attacks come on, what usually triggers them, and what the symptom pattern looks like. When you say your entire body rages, what do you mean? Do you mean your muscles become very tense or rigid? Do you get very high blood pressure? Do you have trouble sitting still? Do you run a fever? How often do these attacks occur and are they always triggered by something, or can they occur for seemingly no reason? When the symptoms begin, do they always progress to a full-blown attack, or do they sometimes resolve on their own? How long have they been happening? When was the first one? Have they been getting more or less frequent? More intense or less intense?

 

I think all of these questions are important for trying to figure out what might be the cause. It sounds like you suspect they are withdrawal related, as do I, but syndromes can also arise while taking a consistent daily dose of drug as well. 

 

Hope we can at least do something to minimize them while getting off the drugs. Also quite worried about your level of sedation (as I'm sure you are). 

 

Edited July 12, 2023 by DataGuy

[arbor]

Thinking of you @Outsider  Hope you're doing ok.    Arbor