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

[Outsider]

Excuse me if I'm being vague / chaotic, it's too hard to focus or think about anything, also I apologize for not researching much on the site, it takes a lot of effort just to type this and I'm too desperate, however I'll take as much as time as needed to follow through any reply / references I get, thanks in advance. 

 

It's been years and I didn't know the cause was antidepressants, I only remember a few names (Clonszipam, Fluxtonin[I think], Seroxat, Alprazolam..)
I've been through 10 different doctors and each gave me a different pack of 4 meds, I don't remember many of the names since it was more than 4 years ago and I spent 3-6 months on each pack, I just remember suffering from 24/7 seizure symptoms, endless fear, and stomach complications, they're still with me till now, calmed down a little after 3 years of fighting, but I made a mistake an started Amitriptyline, and I'm getting complications each time I try to lower the dose (it's only 10 mg, and I get seizures whenever I go off it for half a day)
Somehow my migraine med (Zomitriptan) eases most of the symptoms, doctors keep brushing off my pain saying I'm fine. 

 

Basically it was: 3 years of chaotic 4 pack prescriptions by 10 different doctors >> cold turkey withdrawal (because they refused to tell me how to go off the meds and I screwed up) >> withdrawal effects for 3 years, slight recovery after the long fight >> getting stuck with 10 MG Amitriptyline (reduced to 5 now) and getting seizures if I go off

 

I'll add in any details when I remember them, My symptoms before Amytriptyline were:

- Nausea (too heavy) 

- chronic fatigue (too heavy, hardly can stand up) 

- dizziness, lack of coordination,

- full time panic 

- twitching in muscles, uncontrollable

- mouth shivers like it's cold and it becomes hard to talk or stop it

- seizures trigger after eating, along with psychological complications like extreme fear, anxiety and loss of coordination, I still have no idea why this happens, and it mostly happens if the food is dense / oily (even drinks trigger that)

- too hard to think, focus or even read messages

- full time fear

- too hard to identify my pain type, source or symptoms (including the ones I mentioned, took me months to detect them) 

- unidentifiable heavy pain

 

 

I hardly managed to overcome the seizures before I started Amytriptyline, but they were back as soon as I tried to withdraw 

 

Symptoms on Amitriptyline : same except:

- extreme fatigue 

- sickness (as much as Sinus / Vertigo, I mistook it for them at the beginning, I'm using their med to relieve the symptoms

- increased fogginess / separation from reality

- loss of taste, and increased craving for all sorts of organic / liquid materials (including the most disgusting ones, I can't distinguish in terms of feeling)

- decreased energy from the already low levels

 

On Amytriptyline withdrawal :

- Seizures, mild to heavy I guess

- Suicidal behavior on extreme seizures, because I lose all awareness / emotions and only pain remains, feels like I'll only live pain for the rest of my life 

 

A few notes:

- The symptoms I mentioned are based on my own research and I could be describing them wrong, for example I though I my "seizures" were simply "panic attacks" until I checked how panic attacks are and checked the first search result of "seizures" in Google, I still don't know enough about seizure types but I know that it's more than a panic / fear, you're welcome to ask me or correct me about any symptoms and / or their meaning 

 

- Doctors never told me any diagnosis, they simply threw me meds after a short interview, I was 18-ish back then and didn't know the risks of what they were doing, you're welcome to ask me about that part too since I'm not in the best country to get diagnosed 

Edited January 21, 2021 by Outsider
Forgot to add Amytriptyline symptoms

[Gridley]

Welcome to SA, Outsider.  

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.  I know there's a lot you don't remember.  Just do the best you can.  Please give the dates and dosages of the Amitriptyline.  Use the following link:

 

Account Settings – Create or Edit a signature.

 

It sounds like you're suffering from withdrawal from multiple drugs.  Withdrawal symptoms can begin after only one month on a psychiatric medication.  Doctors don't believe in the existence of prolonged withdrawal from antidepressants; it's what the drug companies tell them and what they believe.  So that you have a better idea of what you're experiencing, here is some information on withdrawal and the healing process.  The pre-Amitriptyline symptoms you describe are typical f with drawl.  It's a very encouraging sign that you're beginning to feel a bit better.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

The Windows and Waves Pattern of Stabilization

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

Regarding the seizures, I found the following information:

 

"Taking too much amitriptyline can cause serious side effects such as a change in your heartbeat, seizures or fits."

 

 Please describe in more detail what the symptoms are like and how soon after you've missed a dose do the symptoms occur.  Once we have a bit more information, we will be in a better position to help you.

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that ae single ingredient (not mixed with other types of supplements).

 

This is your Introduction topic, where you can complete your drug signature, ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

 

[Outsider]

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 

 

[Gridley]

13 hours ago, Outsider said:

 

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

As your doctor correctly diagnosed, you are experiencing withdrawal from your cold turkey of 5 mg Amitriptyline two months ago.  When you say you couldn't take it any more and CT'd the Ami, what do you mean by "couldn't take it any more," what do you mean.  Were you having side effects?  Are you talking about the seizures?

 

The only known method to reduce withdrawal symptoms is to reinstate a very small dose of the same drug.  If you choose to do this, I'd suggest 0.5mg.  Please read:

 

About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic

 

This link explains how to get the small nonstandard dose of Ami you'd need for the reinstatement.

 

Tips for tapering off amitriptyline

 

Reinstatement doesn't always work and I understand you might be reluctant to try Ami again after the seizure situation.  That's one reason I'm suggesting a very small reinstatement dose.  It takes 4 days for a dose change to reach full strength in your blood stream nd a few more days to register in the brain.  If you feel worse after reinstatement, stop immeditely.

 

The alternative to reinstatement is, as you say, to tough it out.  You'll eventually stabilize.

 

13 hours ago, Outsider said:

Is there a safe way to use Diazepam? 

 

You have to be extremely careful because physiological dependency on a benzo can result from 2 to 4 weeks' use and also from intermittent use.  This is especially so with Diazepam, which has a very long half life (stays in your system a long time) and the dangers of intermittent use leading to dependency are especially present. Once you're dependent and reach tolerance, it doesn't serve its original purpose any more and you're taking it just to stave off withdrawal (I'm in the midst of a diazepam taper.)  Regarding the codeine your doctor recommended, that's not something we'd recommend and definitely not in conjunction with a benzo.  

 

If you'll look at my original reply to you, I mention magnesium and omegas as safe supplements to take in withdrawal.  You said your doctor recommended calcium.  Calcium can negate the effect of magnesium and the two should be taken at least two hour apart.

 

You mention being dehydrated.  I'd recommend you get some electrolyte drink like Pedialite to help with this.  Water alone, though helpful, won't do the job.  The coconut flavor is the least sweet.  Once you open a Pedialite bottle, it must be refrigerated and consumed within 48 hours after opening.   You might need to use it regularly if you're losing a lot of liquid through vomiting or diarrhea.

 

 

 

 

 

 

 

 

[Outsider]

Thanks for the reply, but doing a little research yesterday I'm suspecting to have a high level of Serotonin, so I'm worried about getting on any AD

 

Reasons: 

My attacks / benzo withdrawals cause flu-like symptoms along with seizure-like ones (explained in the first post) and that was especially powerful when I was on Amytriptyline, and when I was taking a migraine med, those 2 occasions multiplied the pain and effects by x2, I'd spend the day feeling my entire head pulsing and suffering a runny nose + all the other symptoms up that I was too dizzy to recognize them, this mostly popped up after I started Amytriptyline, especially the flu. 

 

If I was correct, then my aim now is to use the benzo to tone this down safety, I don't think I'm dependent on any benzo yet so which one do you think is the safest to use? I can deal with moderate symptoms, I don't need it all day, just the minimum requirement to calm down my brain and help it heal, and in a way that makes tapering it later easier. 

 

 

 For dehydration, is there a cheap way to DIY an electrolyte drink? I doubt we have those here (country is in a post apocalyptic state) and I don't think I'm rich enough to get it anyways, just getting the meds is hard enough and supplies are too limited and chaotic

 

Also, I'd rather not cross use any meds because I keep forgetting them, I'm too disoriented, my phone speakers are broken so setting alarms won't help, and I'm not in a very supportive environment to rely on others, it's why I'm trying to stick with a benzo only because it'll be hard enough 

 

And an update about fasting 

It does help in a normal state but not much in a nerve attack, happened yesterday and I had to take 4.5 MG of Diazepam on 2 stages, 2 MG mid-day which wasn't enough and 2.5 before sleep 

 

 

Also I have that problem of waking up with an attack and it's too painful, also scary, keeps making me worry about dying, anything I can do for that? 

 

And thanks for the reply 👍 

[Outsider]

Update : just came out from the doctor's appointment.

 

He said he'll be giving me a Fluphenazine 25 MG injection in 3 days to treat my reaction to Diazepam withdrawals and such

[Outsider]

I'm seeing a neurologist and by far he was relying on suppliments rather than meds, however he prescribed benzos to treat my withdrawal effects

 

This is my introduction topic :

https://www.survivingantidepressants.org/topic/24087-outsider-confused-history-of-multiple-antidepressants-symptoms-still-occur-after-years/

 

I believe my critical issue right now is a benzo withdrawal not an AD one (still new to all this and researching, not sure if I'm right) 

And from what I found, Fluphenazine lowers Serotonin? On the span of weeks tho

 

So my question is : am I getting myself into a new withdrawal mess? What will happen after that injection wears off in case it worked? And if something happened, can I taper with benzos instead?

 

I'm already in too much pain and I feel (physically) like I'm dying on every nerve attack

 

ER doesn't do **** about it except giving me a Diazepam shot and calling it a day

[ChessieCat]

Please ask questions in your Introduction topic here:

 

outsider-confused-history-of-multiple-antidepressants-symptoms-still-occur-after-years

 

It is the best place to ask questions about your own situation.  It means that all your history is in one place and you will not need to repeat yourself.  Also, moderators regularly check the Introductions Forum for new posts by members.  But posts made elsewhere on the site may not get seen.

 

[Outsider]

Turned out he's giving me Fluphenazine to treat my overthinking and such. 

 

I refused to take it, it might be a solution and might be not but I'm not willing to get into the chaos or meds again, I'll stick with Benzo reinstatement and taper. 

 

PLEASE someone suggest a relatively safe Benzo to use

 

Update about benzos:

Took 5 MG a week ago, suffered the flu-like symptoms like I said up, that happened the 2nd day after the 5 MG. 

So I took 4.5 MG then 5 MG the next day, and since then it's been 3 days with 1 MG at the morning and 1 MG at night, stable at the moment 

The med is Diazepam (Valium) 

[DataGuy]

Hi @Outsider

 

Can you list all your current and recent drug and supplement use? It sounds as if you've been using a benzo intermittently or as needed. Can you tell me for how long you've been doing that, as well as the frequency? Sorry if I missed where you said that. 

 

Unless you have been using medications regularly, I would avoid taking any further meds. The only medications you should continue are the essential ones that you have developed a physical dependency on ie anything you've been taking for >1 month with some regularity. If you are suffering from withdrawal, new or intermittent medications are unlikely to help you.

 

If you have become dependent on the benzo, please regularize the amount and frequency of your dosages. 1MG morning and night would work, but do not take any more throughout the day or as needed. You don't want your nervous system going up and down. You want to stabilize it. 

 

Again, please list all current and recent drugs. I checked your profile but you only listed past drugs and the diazepam seems to be missing. Just looking for current drugs (and supplements). Here is a link to your signature.

 

As for the electrolyte drink: you can make one yourself by putting some salt in a sugary drink. I don't know what type of salt you have access to, but in some cases you can buy some that has more minerals than simply sodium and chloride. 

 

That is interesting that fasting helps you. Seems you have a reaction to food. How is your weight? Is it stable and within healthy range? Thanks. Sorry you are suffering like this. 

 

[Outsider]

On 4/1/2021 at 2:31 PM, DataGuy said:

but you only listed past drugs and the diazepam seems to be missing.

Because until the past week, I only used it 4 times during 2 months, 2 of them were 2 MG tablets, and 10 MG injection at the ER, then another 10 MG but took it twice that day because the first time wasn't enough, there was a week or more between each use so it wasn't "official" per say. 

 

But the past week had 2 nerve attacks and they felt life threatening (don't know if it was real or just an amplification by neuro-emotions) so I took it constantly while waiting for an answer from here, I did mention how I took it: 

On 4/1/2021 at 10:01 AM, Outsider said:

Update about benzos:

Took 5 MG a week ago, suffered the flu-like symptoms like I said up, that happened the 2nd day after the 5 MG. 

So I took 4.5 MG then 5 MG the next day, and since then it's been 3 days with 1 MG at the morning and 1 MG at night, stable at the moment 

The med is Diazepam (Valium) 

 

Tho I don't this it registered in my brain yet or at least not at a critical level, so my question about the easiest benzo to taper still stands

No other ADs, APs, or Benzos I'm taking at the moment, I'm drug free except for the things I mentioned. 

 

 

Another thing I remembered recently is that I was prescribed a "med to help me sleep" when I was on Amytriptyline, couldn't find the pill box and the prescription was taken when I got the med so I didn't manage to get the name yet, I took it for a month and I think I CTed it. 

 

For my supplements, my doctor advised to not take anything unless he tells me to, right now I'm taking 2 types of supplements:

 

Zinforin (2 tablets daily) :

- Iron (as carbonyl) 50 mg

- Zinc sulphate        61.8 mg

- Folic acid               0.5 mg

 

Cintrex (1 tablet daily) :

- Vitamin D3 (Cholecalciferol)  5 mcg

- Calcium                                   400 mg

- Magnesium                             150 mg

- Zinc                                          5 mg

 

About Fasting and food tolerance :

I have a HUGE problem with eating food, the number of foods I can eat without triggering a nerve attack can be counted on my fingers, not even joking

On 3/28/2021 at 8:09 AM, Outsider said:

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

Add to that, if I sleep on my back and the top of my stomach isn't elevated above the fluids / food level in it, it ALSO triggers an attack, apparently there's a nerve on the top (I'm guessing the occipital nerve itself) that gets triggered on any sort of touch + the stomach suffers with anything complicated to metabolize, both issues exist. 

I did an endoscopy, they told me that an area on top of a nerve is inflamed but no ulcers or whatnot, I noticed that using Esomeprazole (40 MG tablet in the morning) helps a little with food types, it doesn't eliminate the effect but helps with acid reflux and related problems, also using things with Soda (I'm relying on 7 up or Cola) gives an instant relief, if the nerve wasn't very affected, if it was, there's no stopping the agony aside from throwing up and relying on Diazepam. 

 

Another addition about Codeine and Diazepam :

 

If my nerve attack includes extreme nerve pain, then Diazepam alone won't be enough. 

I risked yesterday and did 2 experiments :

1. 2 tablets of codeine (8 MG each) + 1 MG Diazepam, nerve pain was %70 relieved, Diazepam's effect was stable, but the relief wasn't 100% so it triggered the nerve attack again

 

2. 1 tablet of codeine + 4.5 MG Diazepam , this one relieved the full nerve pain and most of the nerve attack through the entire night, and I risked to sleep through it because I was too worn out, tho the next day I had to take 1.5 MG at the morning and 1 MG 4 hours before my usual night schedule of Diazepam + go out on a walk for the nerve attack to finally calm down

 

I did experiment 2 after 6 hours of the first one, codeine's effect says it wears off after 4 hours so I added extra 2 as a precaution

 

Also, light sensitivity is the biggest factor in triggering nerve pain, the 2nd big factor is sound sensitivity, light sensitivity can trigger it if I use screens for more than 1 hour while focused, and it reaches an irreversible state (where I can only stop it with Codeine Diazepam combo) if I force it for one or more hours in a row

 

At times it triggers on its own without lights / screens stimulation but that is 30% or less likely to happen

 

While reading an article linked from SA, I think I have signs of Serotonin toxicity in the Pinal gland, light sensitivity, nausea, uncontrollable twitching of muscles, separation from reality, loss of focus, restlessness.. Etc, any thoughts on this matter would be appreciated. 

 

And my question about the safest / easiest benzo to use for reinstatement still stands, since I'm early that'll help. 

 

I keep appreciating the care I'm getting on this forum 👏 thank you for being there. 

[DataGuy]

@Outsider I will get back to you after work today. For now, the best way to taper a benzo is by around 10% a month. You may want to try reducing 2.5% per week to start off, then you can slow down or speed up if you want from there. 

 

Why taper by 10%?

 

The easiest benzo to taper is the one you are currently taking, diazepam. It has the longest half-life and is a bit less potent than others such as Xanax or Clonazepam. 

 

Can you list the foods that you are able to tolerate? Maybe we can find a few more that do not cause terrible symptoms. Would not want you to be malnourished. 

[Outsider]

1 hour ago, DataGuy said:

 

Can you list the foods that you are able to tolerate? Maybe we can find a few more that do not cause terrible symptoms. Would not want you to be malnourished. 

 

- Fava beans (complete tolerance usually, but after a while you get the usual stuffy feeling) 

- Anything sweet but without.. Baked stuff? Like Jam, doesn't hurt my stomach at all but my throat gets on fire, still not that bad since it doesn't trigger a nerve attack 

- Meat, mostly tolerable but not completely

- Eggs, same as meat

- Soda drinks

- That dry dairy thing, not yogurt nor milk, those two are heavy ESPECIALLY milk, but I don't know the name in English

- Popcorn if dry enough (not much oil) 

 

Those are the foods I can tolerate, in the case no oil / fat gets added. 

 

In terms of oil, one small spoon of olive oil is as heavy as pan of frying oil, I don't know how that works but seems like oil / fat type does make a lot of difference too, tho none of these is tolerable enough to rely on

[DataGuy]

10 hours ago, Outsider said:

 

- That dry dairy thing, not yogurt nor milk, those two are heavy ESPECIALLY milk, but I don't know the name in English

Do you mean cheese?

 

How are you doing with the diazepam, @Outsider? Are you dosing it consistently? Is it helping you? 

 

I would avoid adding the codeine. It's pretty unlikely to help you long term, as you'll develop tolerance and dependence if you use it consistently. Pain can also be a withdrawal symptom of opioids. If you are going to try to use the diazepam to stabilize, try to use the lowest dose possible. It may not help your nerve attacks long term and may actually make them worse in the withdrawal. It is the case with most psychotropics that they only tend to help short term and can worsen your condition in the LT.  

 

Seizures can also be a withdrawal symptom from diazepam, which is why you will need to be very careful withdrawing from it. 

Edited April 5, 2021 by DataGuy

[Outsider]

5 hours ago, DataGuy said:

Do you mean cheese?

Nope, it looks white and I'm not sure if it's common outside here, cheese hurts. 

 

Diazepam currently is 1 MG at the morning, another 1 MG at night

Codeine is 2X8MG at morning, same at night

 

This combo seems to be the only one that stops my occipital nerve attacks, or what I called Seizures (the critical ones) 

Online the symptoms match the seizures but I don't know why doctors refuse to call it that, their excuse is that "I don't pass out" usually. 

 

I'm stable at the 2 doses, started since I said I started here, I think it's been almost a week, when should I start tapering? And is tapering Diazepam the same as tapering ADs? Because unlike ADs it develops tolerance and that's the problem 

 

For the codeine, if I lower the dosage I'll need to up my Diazepam to counter the attacks, otherwise I'll get in that life-threatening feeling and attack, while I can bear with the pain despite how intense it is, it started to feel like I'll literally die if I just let it escalate, I don't want to risk it when there's no way to monitor my condition and no ER to trust. 

 

Maybe I should counter it just till my nerve inflammation heals? (I don't know how long that'll take) because THAT is what triggers seizures mostly at the moment. 

I don't know if it's healing either.. It's too hard to gauge the pain and improvements

[DataGuy]

@Outsider: Yes, tapering benzos is similar to tapering ADs (you also get tolerance and dependence with ADs though). Benzos are a bit stronger and a bit more a of a problem. They are known to be neurotoxic. If you think you are stable, I would begin tapering right away. You want to take them for the shortest time possible. Do you know how to make a liquid solution or dry taper? Sometimes you can buy a liquid solution at a compounding pharmacy, if you have access to one. Diazepam also comes in a variety of pill sizes, depending on where you are. 

 

What is this condition exactly? Is the official diagnosis "Occipital Neuralgia"? I don't think there are many good treatments for long term pain. I would avoid both opioids and benzos. I know there is a semi-famous doctor in my country who says that NSAIDS (such as aspirin or ibuprofen) are just as effective long term as opioids (and safer). 

 

I think your best bet for healing your nervous system is to be medication free (after a slow, careful taper). However, it's up to you how much pain you can tolerate. Certainly you don't want any one symptom to get intolerable when you are tapering off these meds, and that includes nerve pain. The ultimate guide to tapering benzodiazepines is here: Dr. Heather Ashton's "Ashton Manual". If you read this, you will know more than most doctors. We take a more flexible approach, where you can taper slower or faster if you need to. The taper should be very steady and symptom-based (pausing if you need to in order to get symptoms under control). The manual is quite long but well worth your time. 

[Outsider]

2 hours ago, DataGuy said:

 

What is this condition exactly? Is the official diagnosis "Occipital Neuralgia"?

"Occipital nerve inflammation" in my language, diagnosed by a neurologist. 

 

I tried an NSAID but it wasn't as effective as codeine once the pain went past a certain threshold 

 

Maybe if the threshold goes lower overall I can switch to NSAIDs completely, for now I'm using less opioids when possible. 

 

It's been 3 days while I'm stable, however making solutions will be hard for me, it's hard enough to convince myself to remember and take the pills, can I ask the pharmacy to make a lower dose from an existing medication for me? 

 

Thanks for the manual, I'll check it but it'll take a while because of my extreme light sensitivity. 

 

I hope my nerve can heal in a month or two. 

 

One more question, can I taper down the benzo to 0 but then use a medium - high dose with a quick taper on emergency? 

 

Under normal circumstances I can manage the symptoms, but not with the nerve attacks, that's when I need the benzo. 

[DataGuy]

@Outsider, sorry for the delay. I would definitely recommend against taking the benzo again once you tapered unless you absolutely have to. As I said, it may end up making your symptoms worse long term.

 

Yes you can ask the pharmacist for options on lower doses to make it easier to taper. Often people will crush up the tablets and then weigh them to get an accurate dose consistently, or they will make a water solution. Getting an accurate dose on a daily basis is pretty essential to tapering successfully. 

 

I also wanted to mention: if you find reading your computer screen difficult, you may want to consider using an app that allows your computer to read text back to you. This way you don't need to strain your eyes. It can also help with editing your own writing (hearing someone else read can be better than simply reading it yourself). Google has an easy free one, which is mostly the one I use. 

 

 

[Outsider]

18 minutes ago, DataGuy said:

I would definitely recommend against taking the benzo again once you tapered unless you absolutely have to. As I said, it may end up making your symptoms worse long term.

 

So, a stable (slightly high) Benzo dose is better than no dose at all but random occasional use? 

 

By slightly high I mean between 2-5 MG daily

 

And thanks for the tip about screens, phone speakers are broken tho and audio stimulates the nerve too, but I have some updates about that. 

 

Update: I switched from 1 MG by 1 MG at day and night doses to one 2 MG Dose at night

 

My nerve seems to be less sensitive to stimuli too, been like 3 days of that stability so I'm not sure 

 

Ever since the nerve got a little stable, I switched codeine with NSAID, seems to be working since the pain threshold is pretty low in my normal state

 

My stomach is as sensitive as ever, but the last time it only triggered a mild seizure without much nerve pain (yesterday's night) because I allowed myself to eat some bad food. 

 

I guess they're signs that my nerve is healing? 

 

 

But something is troubling me, I'm becoming more aware of how "separated from reality" I am, I'm mixing things up between dreams and reality, it's too hard to think of the real world as more than a video game, and I got some occasions where I hurt myself jumping high or slipping, but it only felt like I'm a game character, and the pain was there but I was... Far? 

 

It's making things hard to interact with, I have to logically analyze the thing, search in memory for an explanation of it, and a matching response, then act that response. 

It's never as automatic as it should be. 

 

This feeling isn't new to me, has been there for years, but I think it got amplified again after Amytriptyline. 

[DataGuy]

Hi @Outsider, how are you doing? Any updates or progress?

 

I think it is tough to get the answer about intermittent vs steady daily use of benzos. These drugs are typically studied for their benefits rather than harms, so the studies on whether intermittent vs daily use is more harmful are not really there. I think it depends on how much you use and how often. Long term daily use of benzos is never recommended for anyone except for people with epilepsy in some cases. Even then, I don't think they are actually proven to improve outcomes or quality of life (according to Cochrane). If pressed, I would say very infrequent intermittent use would likely be less harmful. Maybe once per week. 

[Outsider]

@DataGuy Thanks for the reply

Yes I usually use them around once a week but I have to follow up with 2 days of tapering, otherwise I end up with a seizure 

 

On the positive side of things, my light sensitivity and nerve attacks seem to be getting less frequent, still there but like half as frequent as before. 

 

I'm trying to help my nerve heal then taper the Benzo, but the nerve attacks / seizures are kinda random still, so I don't know how long that'll take. 

 

Still on the 2 MG Diazepam dosage, one pill at night only. 

[DataGuy]

Ok @Outsider, keep in mind the benzo may make the seizure activity worse. Seems like you are using it for 3 days per week? Diazepam also has a half life of something like 20-100 hours, so this drug can be in your system for quite awhile. There is a phenomenon known as "kindling", where repeated episodes of withdrawal can result in the system becoming more sensitive and thus making seizures more likely. Hence my warning that benzo usage may seem to improve symptoms in the short term, but can worsen things in the medium to longer run. You can read more about kindling in this topic.

 

I think taking it for 3 days per week and then having the diazepam in your system for subsequent days is probably too much. If this is what you are doing, you are better of taking it daily and slowly tapering. Best to keep your system as stable as possible. 

[Outsider]

On 4/28/2021 at 1:44 PM, DataGuy said:

Ok @Outsider, keep in mind the benzo may make the seizure activity worse. Seems like you are using it for 3 days per week? Diazepam also has a half life of something like 20-100 hours, so this drug can be in your system for quite awhile. There is a phenomenon known as "kindling", where repeated episodes of withdrawal can result in the system becoming more sensitive and thus making seizures more likely. Hence my warning that benzo usage may seem to improve symptoms in the short term, but can worsen things in the medium to longer run. You can read more about kindling in this topic.

 

I think taking it for 3 days per week and then having the diazepam in your system for subsequent days is probably too much. If this is what you are doing, you are better of taking it daily and slowly tapering. Best to keep your system as stable as possible. 

 

It's been a while but many things went roller-coaster and I think I kindled multiple times, I had to be up on a dose of 2.5 MG Diazepam 3 times a day along with 1 dose of 50 MG Pregabalin (a new psychiatrist I'm seeing is giving me those to manage my nerve pain) 

And it's been a week since I tapered down to 2.5 MG 2 times a day and another 2 doses for 50 MG Pregabalin 

 

Tho I was a few hours late on my morning dose of Diazepam today and it triggered a "withdrawal nerve attack" 

The symptoms start with sharp pain in my chest, exactly at the bottom of the ribcage area, then the pain becomes unbearable and my heartbeats skyrocket, the only way I could counter it is a breathing method I found somewhere on SA, 10 seconds inhaling, 10 seconds keeping it in, and 10 seconds exhaling, it tones down most of the pain (especially if I'm walking) until the Diazepam starts to take effect (30-60 minutes), but I could still feel my heartbeats going haywire

 

It's been a couple of hours since the Diazepam dose fully took effect but I'm still feeling exhausted, uneasy, and some pain at the chest area, they're more of annoying than painful but they're triggering a panic attack. 

 

The doctor wants me to taper down to 2 MG by 2 MG on Tuesday and I'm checking a neurologist today. 

[Outsider]

@DataGuy I'm experiencing weird symptoms now and I'm on a stable dose of 4 MG Diazepam daily (2 each 12 hours) along with 100 MG Pregabalin (50 each 12 hours)

Trying to taper Diazepam first. 

 

I'm experiencing a lot of symptoms that are hard to put into words, mostly in my head area, is there any chart for such symptoms that lists (and maybe explains) each so I can know how ti explain them? 

 

I noticed that I'm sensitive to Pregabalin too, I get a lot symptoms after taking it, and different ones when I'm not, even tho I'm on the lowest dose and aa far I know, it's not a psychiatric drug. 

I'm getting a LOT of uncontrollable anger outbursts with an excessive feeling of loneliness and a huge urge to blame everyone around me, to make them do anything I want no matter the cost, I think my will power reached 0.

 

I also got MRI scanned and discovered a tumor in the pineal gland, they said it's too small but it only proofs that I have been Serotonin intoxicated and other stuff, but I wonder if it'll heal on its own or if it'll remain forever. 

 

Hunger is not helping, fatigue and having no set place to stay aren't helping either, people's patience on me is running out, I'm physically better in many ways but it feels as if I have no energy left to appreciate that, I don't know if it's another symptom or not... I think I just want to be human again... 

[DataGuy]

Very sorry you are suffering so much, @Outsider. Here is a complete list of possible symptoms from benzodiazepine withdrawal. Many symptoms from the various psychotropic drug classes overlap with each other. Depending on the person and the extremity of the withdrawal, it seems they can cause almost any symptom under the sun. 

 

Here is a briefer list of possible withdrawal symptoms from antidepressants from a paper by Fava: https://www.karger.com/article/fulltext/370338

 

 

As for Pregabalin, here is the FDA label for the drug, which has a list of side effects, adverse reactions and warnings. This drug did seem to cause an elevated rate of a certain kind of tumor in mice, but they also warn against rapid discontinuation. Pregabalin is indeed a psychiatric drug, and is prescribed as such frequently. 

 

I think your best bet is to start to taper both drugs (slowly, one at a time) once you feel you are as stable as you are going to get. Neither are recommended or tested for long term use. Feeling like you have no energy despite feeling physically better very well could be a symptom. Benzodiazepines are known to cause symptoms of depression.

 

How large was the tumor, exactly? If they are small enough they will typically just monitor them with intermittent scans. Sometimes they will go away on their own or they will simply grow too slowly to have much of an effect. 

Edited June 22, 2021 by DataGuy

[Outsider]

I just want to sleep.. 

I just want to.. Sleep.. 

I just want to sleep... 

 

Prolactin.. Neurologists.. Surgery.. Psychiatrics.. Meds.. Meds.. More meds.. Blood tests.. No money.. Too far.. Too tired.. Too much pain..

 

I just want to...

Sleep... 

[DataGuy]

Medications usually only provide temporary and partial relief of insomnia. Your best bet is to slowly taper these drugs. Then your sleep might be a bit more normal and restful (eventually). 

 

I feel your pain @Outsider. Let me know when you think you have stabilized as best you can. Hope you feel better soon!

[Outsider]

On 6/29/2021 at 9:48 PM, DataGuy said:

Medications usually only provide temporary and partial relief of insomnia. Your best bet is to slowly taper these drugs. Then your sleep might be a bit more normal and restful (eventually). 

 

I feel your pain @Outsider. Let me know when you think you have stabilized as best you can. Hope you feel better soon!

 

I'm not sure if I stabilized enough, but many things happened :

- I cut down the morning dose of Diazepam from 2 MG to 1.5 MG for a week, and now I'm on 1 MG for the 3rd day however 

- I took the 2 MG dose instead of the 1 MG at the morning by mistake, planning to take 1 MG at night to make up, somehow I woke up earlier than usual (around 2 hous earlier) with signs of a nerve attack, and that's when I took the wrong dose

- I upped Pregapaline to 100 Mg at the morning and 50 at night, I think I'm having extreme rages and offensive / anxious side effects from it, with the rages being extremely dominant and uncontrollable, just someone walking beside me is enough to make me want to beat the crap outta them, I already lost my control multiple times 

- Migraines / Nerve pain / Serotonin Toxicity / Seizures.. Whatever they call that ****, when my nerve fires up on the right side all the way to the back of my neck, my eye hurts and goes numb and the same time, my light and sound sensitivity goes haywire, and unless I somehow manage to calm it down it escalates to flu-like symptoms and immense heartbeats.. That state happens if I push myself even a little bit, and I mean like getting up from bed if I'm too exhausted to (which is 90% of the time), using screens (even to have fun for a couple of hours), stopping myself from lashing out, sometimes lashing out itself does that. The more effort I have to put in the fast it comes, and by far the only solution is doubling the Pregabaline dose and overdosing on NSAIDs, for 2 days or so, while applying ice all the time. The migraine med (Zolmitriptan) used to stop it but it boosts Serotonin and recently it caused the flu-like state with unbelievable heartbeats rate by its own, even when the pain subsidies, so it's not an option. 

 

I have no idea how to deal with this current situation, I'm still going through the list of symptoms you sent me when possible (and I have most of what I'm reading by far), but tapering is hella hard because it's hard to focus, hard to commit, and the migraine-ish state still has no solution. 

 

Sometimes I wish I could just CT both and wait recovery instead of trying to balance this roller-coaster, but I don't think my body can handle the consequences.. 

 

Heh, I'm just finding out more and more of the life threatening situations I survived, and doctors have nothing to do but prescribe me antidepressants or benzos. 

[DataGuy]

Hi @Outsider, sorry to hear about the nerve attacks and adverse reactions.

 

The one trend I see that you seem to be continuing is 1) going on and off medications  2) dosage increases and decreases which are too much and too sudden.

 

These will increase your instability, not decrease it. These medications are not ones that you can simply increase or decrease depending on how you feel on a certain day. The only time you should be rapidly decreasing a drug is if you are having an adverse reaction to it. Given the number of drugs you have been on and the mysterious etiology (origin) of your symptoms, the only time you should be rapidly increasing dosage of any of these psychotropics is never. I think your system has had enough of these drugs.

 

*However* CT'ing or rapid withdrawal is the worst possible option and generally will result in symptoms that are both more intense and longer lasting, so the best option is to keep all doses regular and all decreases in dosage small, not too frequent and symptom-based (all tapers should be this way). I am not surprised you had a nerve attack after decreasing the dosage of diazepam by 25% over a couple weeks. This is too quick for many people, never mind someone like yourself who's system has already been sensitized and ravaged by rapid withdrawals and cold switches. Important to keep dose decreases to 10% or less per month until you show you can tolerate them. It's impossible to know what effect an action is having if you are frequently decreasing or increasing rapidly, adding or subtracting new drugs etc. For example, the effect of any decrease in dosage of diazepam may take more than a week to be fully felt, and even more time than that in some people, since the half-life can extend to as much as 100 hours. 

[Outsider]

7 hours ago, DataGuy said:

Important to keep dose decreases to 10% or less per month until you show you can tolerate them. It's impossible to know what effect an action is having if you are frequently decreasing or increasing rapidly, adding or subtracting new drugs etc.

But what about tolerance? I seem to be hitting it fast, how do I deal with it? 

 

Right now my dose is 1 MG Diazepam in the morning, and 2 MG at night. (Total of 3 MG) 

 

100 MG Pregabaline at the morning, 50 mid-day and 50 at night. (Total of 200)

 

Should I hold at this and continue to taper Diazepam next month, then start tapering Pregabaline once done? Or taper them together? 

[DataGuy]

Hi @Outsider,

 

Can you update your signature? I don't think your current combination of drugs is listed there. Just follow this link.

 

So you are taking 3mg of diazepam total and 200mg of pregabalin? No other medications or supplements?

 

Can you explain what you mean by tolerance? Do you mean that you need to take more of the medication to get the same effect? If so, that is exactly why benzos are only recommended for use for a few days or weeks at most (among other reasons). I think that is the worry about treating the nerve condition with a benzo, it may temporarily help, but then it can make it worse in tolerance or upon withdrawal. And that is why withdrawal needs to be slow.

 

I think it is a difficult decision as to whether to get rid of pregabalin or diazepam first. How long have you been taking pregabalin? 8 weeks or so? Normally we would taper the benzo last, since it has a calming effect on the nervous system, but pregabalin also has an inhibitory effect. I think I will leave it up to you which you think would be best to taper first. Which drug do you think is causing the most adverse effects? It may also be easier to eliminate the pregabalin, since you have been taking it for a shorter duration. The main recommendations are to taper slowly and only taper one of them at a time, since it can be difficult to distinguish between adverse drug effects and withdrawal effects, and tapering more than one medication at once makes that much more difficult. 

Edited July 8, 2021 by DataGuy

[Outsider]

6 hours ago, DataGuy said:

How long have you been taking pregabalin? 8 weeks or so?

Probably, I updated here when I could but it'd hard to use screens. 

 

And yes I mean by tolerance "no longer having the effect" but I mean more of "withdrawal side effects might arise more" 

 

I was searching and Pregabalin seems to elevate Serotonin levels, which frightens me because it wasn't long since I suffered the ignored serotonin toxicity 

 

However, big problem here is that there's nothing else working for the nerve pain, I would like to try tapering Pregabalin first and checking if I get nerve pain, maybe slow it down more if I do. 

 

And I've been on 200 MG for only 5 days now, it was 150 for like 2 weeks before and 100 only since I started it. 

 

I'll update my signature ASAP but it's too hard for me to understand or use anything. 

 

Also note about Pregabalin withdrawal, I'm having adverse reactions in withdrawal from 1 pill (50 MG) with flu-like symptoms and heavy tight pain in the back of my skull and the opposite side of the usual nerve pain (left side, the migraine-like one happens in the left side) 

 

Can you tell me how EXACTLY to go about Pregabalin withdrawal? 

[DataGuy]

Yes, @Outsider. You are saying you have already started tapering pregabalin and are getting withdrawal from dropping one 50mg pill from your 200mg daily dosage? That is not surprising. As with every psychotropic, we recommend only dropping by 10% to start things. But your main guide to withdrawal should be your symptoms. If withdrawal symptoms get too intense, it's always best to pause until they subside, and resume tapering at a slower pace. Here is a guide to tapering pregabalin, which should tell you exactly how to taper. 

 

If you are still having a lot of trouble with screens, I'd recommend using a reader app to have your phone or computer read the text to you, so you don't have to look at it. The google store has one here, for example. That is the one I use, because I have some problems with screens as well. But there are definitely others out there. 

[Outsider]

23 hours ago, DataGuy said:

You are saying you have already started tapering pregabalin and are getting withdrawal from dropping one 50mg pill from your 200mg daily dosage?

I was saying that I got withdrawal symptoms from taking double the 150 dosage in an attempt to relieve nerve pain, but I guess I forgot to explain, I upped the dose to 300 MG that day and had to go down only to 200 instead of my usual 150 because of the adverse reactions. 

Tho now I seem to be able to stick with 150 MG a day, been 2 days and I'm somewhat stable but migraine is always on edge ready to strike. 

 

An update about that tho, I went to a new neurologist and he gave me a long term migraine med, suggesting that I taper the rest and this med will solve my problem within like 7-8 months, the med is Topiramate, I'll start with 25 MG dose a day, and increase it by 25 every week till I settle on 100 MG, then stick with that for 3 months, if migraine goes away, we start tapering along the new few months. 

 

I guess I'll give it a try today since I'm somewhat stable, but I'm researching its interactions with Diazepam and Pregabalin first. 

I'd like your insight on the matter 

[DataGuy]

Hi @Outsider

 

Ok, this is an anti-epileptic drug. Although it is approved to prevent migraines, I very much doubt it will solve the problem long term. I would also bet people who take it long term do not have very good outcomes, but that is something I would need to investigate later when I have time. My opinion is based on 1) the fact that psychotropics do not seem to "cure" or even do much to ameliorate chronic conditions like migraines, depression, anxiety, insomnia, etc. mainly because of 2) tolerance, where the beneficial effects wear off but the side effects remain and 3) lack of long term data on their effect on patient health outcomes like mortality, suicide mortality and quality of life. 

 

There is also the fact that anti-epileptic drugs as a class are known to be neurotoxic, increasing the rate of apoptosis in the brain (and presumably the rest of the nervous system). See here for reference. 

 

"A growing body of evidence generated over the past decade reveals that several classes of drugs frequently used in pediatric and obstetric medicine, including general anesthetics (GAs) and anti-epileptics (AEDs), and drugs that are sometimes abused by pregnant women, including alcohol, PCP, ketamine, barbiturates and benzodiazepines, trigger widespread neuroapoptosis throughout the developing brain of several animal species [1,2,3,4,5,6,7,8,9,10,11], including non-human primates [12,13,14,15,16,17,18,19]. In recent studies we have learned that these same drugs also trigger apoptosis of glial cells, and the vulnerable glial cell type is in the oligodendrocyte (OL) lineage [20,21]"

 

I would be cautious in initiating this drug and taking it long-term. It is possible it could worsen your long term health and quality of life. It's also likely to cause dependence and withdrawal (almost certainly given what you've already experienced). There is also the fact that it is very likely the "benefit" of the drug in reducing migraine frequency is only dependent on continuing to take it. Not sure if the neurologist mentioned that. 

 

I will try to look at what Cochrane says about topiramate for migraines a bit later. 

[Outsider]

33 minutes ago, DataGuy said:

it is very likely the "benefit" of the drug in reducing migraine frequency is only dependent on continuing to take it. Not sure if the neurologist mentioned that.

He said that I won't be taking it forever, only for 3-4 months till I stabilize for certain, then we start tapering along a few more months 

 

As for what else you said, it's too hard to focus right now but I'll try to re-read tomorrow 

I'm on the 2nd day of Topiramate 25 MG, not sure if I should continue or stop, I did have a migraine yesterday and it was hardly stopped by heavy doses of NSAIDs and ice packs all day (REALLY hard to get here because power is off most of the day).