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Need urgend help! Should I reinstate?


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Hi everyone :)

 

I am new to this forum and I am desperate to find help right now.

 

 

Since last year May I've been using Lorazepam at 1mg every 2-3 days to help handle severe eye pain (I've suspected damage of my optic nerves, possibly from a very neurotoxic substance that I was in contact with a couple years ago as well as progressive muscle weaksness and pain. This has been going on for the past 2.5 years, before I used any Benzo. I also had acute lyme disease in 2014).

 

I only planned to stay on it for a short time to finish my master's thesis, but my condition got so much worse that I had to ask for more and more extensions for my thesis so I ended up finishing my thesis in May this year. (now I understand that my rapid decline was possibly caused by the Benzo)

 

To finish my thesis this I had to up my dose from 1mg every few days to daily intake in March 2022 and even increased to 2mg for maybe a week or two in April.

 

In May I finished my thesis and I tried to stop it, so I cut to 0.5mg, I think I even didnt take it stictly every day anymore.  From then on my body literally started breaking down, my muscles got weaker and weaker with each day,with rapid muscle wasting accompanied by fasciculations and burning pain.

 

So I occasionally took 1-2mg to help with the pain (I did not realize my breaking apart was caused by the withdrawal, I was completely uninformed).

 

 

In July I rapid tapered within maybe 2 weeks and stopped. I took a single dose of 1mg again End of August and a single dose of 10mg Diazepam early September to help sleep.

 

 

In mid August I also stopped taking Gabapentin 3x900mg CT, which I had taken for almost a year. I was off Gabap for maybe 2 weeks, maybe I took it occasionally took maybe 1x300mg a day during this time, I cannot recall for sure. Then I upped to 3x300mg per day and have kept this dose since.

 

 

Around end of August I also quit Zopiclone, that I had taken for several years, mostly at 3.75mg for sleep. I rapid tapered it by decreasing to 1.8mg for maybe 2 weeks, then stopped for good too.

 

 

My condition has been escalating since June with rapid muscle loss and muslce weakness so I have been in a wheelchair for the past 4 weeks since I cannot walk for than a few meters or stand up for a minute. I have lots of twitching, muscle pain, buring pain which started in the feet and spread over the whole body. Double vision, tinnitus, increased heart rate, rapid cognitive decline llke my brain being roasted.

 

I developed severe heat intolerance, causing my condition to crash further even after short exposure to heat. My breathing became more and more difficult, my whole muscle tone is weakening, I have numbness in hand and feet and my face, The skin of my hands and feet started to peel off as result of the heat intolerance I think.

 

I also devloped urinary and fecal incontinence. My brain fog is getting worse and worse to the point I have difficulty to even articulate my situation, which makes it almost impossible to be taken seriously.

 

Unfortunately I have no psychiatrist who really knows much about Benzos and Gabapentin withdrawal and strategies and options how to react to my current situation. It was suggested to get off the remaining Gabapentin and replace it with Duloxetin (a SNRI), which so far I refused since they dont seem to be knowledgable in that matter.

 

 

 

 

I know reinstating is a very difficult topic, but in this dramatic case might it be the right thing to do.

And if so, would it be best to reinstate the Lorazepam or switch to a longer-lasting Benzo like V?

 

The situation has become so bad that I have been in a wheelchair for the past 4 weeks because I can hardly walk or stand up straight for a minute. I need to take this in my own hands since doctors

 

 

I am deeply grateful for any advice in this current situation.

 

All the best,

Andy

 

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Which drug are you considering reinstating as I believe the Lorazepam, Zopiclone and Gabapentin are all playing a role in your current situation.  Given your extreme situation, reinstatement may be something you might try but the problem is, both the Lorazepam and Zopiclone are short acting drugs which will make any subsequent taper challenging.

 

You mentioned Diazepam, would your doctor be willing to prescribe that?

 

As Kate08 mentioned, reinstatement has worked for some but not for others, we never know how someone is going to react.

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Thanks for the replies :)

 

From what I read so far I would have considered reinstating Diazepam due to its longer half-life and since many switch to it from Lorazepam to taper. I still have diazepam at home but without a knowledgable psychiatrist on my side I really feel lost. I am trying my best to learn as much as possible, but my capacities to do so are so limited right now.

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Not many doctors know what's in our best interest when it comes to tapering from these medications, if you can find one who will prescribe what you need, we can help you with the stabilization and taper.  I agree using Valium would be best, but it doesn't sound like you have enough to last you long enough to get this done, any chance your doctor would prescribe it to you?
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  • 5 weeks later...

Thanks a lot for your responses.

 

My situation has progressed very severely and I am hardly able to stand on my feet.

 

I guess that the one year that I had taken Ativan every other day has done a lot of damage, since I probably was in constant withdrawal without realizing it. Going cold turkey has pushed me over the edge and I am trying to do my research to understand what is going on with my body.

 

Could it be that I am in an excitotoxic state due to glutamate-induced overactivity? Could this affect my motor neurons and explain the loss of strength, muscle tonus and muscle mass? Will reinstating get this under control?

What doctor could find out and understand what is going on? 

 

From what I read excitotoxicity is involved in some neurodegenerative and neuromuscular diseases and I am really scared.

 

The muscle weakness, fasciculations, muscle vibrations and muscle pain are spreading further and further throughout my body.

I have so difficulties keeping my head on my shoulders and trying to do so for too long will cause in further progression of weakness and fasciculations.

 

I urgently need to make a decision about reinstatement and try to find a neurologist who could understand what is going on. I am trying to get to a Center for neuromuscular diseases but I am afraid they might not know much about Benzo  and Gabapentin-induced damage.

 

My case is especially difficult I guess since I've had progressive muscular issues before of yet unknown origin (as mentioned before possibly mitochondrial damage from a chemotherapeutic + lyme disease in 2014).

 

 

I am so hopeless and desperate right now and really think this might end fatal, since the progression of weakness, muscle loss, loss of muscle tone and pain is so extremely rapid.

 

Thanks for all your feedback and suggestions.

 

 

All the very best,

Andy

 

 

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Are you recording your symptoms and their severity so you can know if you're improving?  When I quit cold turkey, I didn't record my symptoms so I never felt like I was improving but I was, it was my brain that was telling me I wasn't.  I know your symptoms are severe, but has there been any improvement at all?  Do you have waves when you feel bad and windows when symptoms aren't so miserable?

 

Are you saying that you suspect mitochondrial damage from a chemotherapeutic + lyme disease in 2014 in addition to benzo withdrawal?  If so, were you experiencing the effects of the damage  while you were still taking the Lorazepam and Zopiclone?  I tend to blame everyone on the benzo's but if you have other health issues then they need to be a part of your decision to reinstate.

 

Are you any closer to knowing what you should do?  I feel it would be a good idea to have a plan in mind before you see your doctor because not many understand this process so advocating for yourself is very important.

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Thanks a lot for the feedback. Unfortunately, my symtoms just progress rapidly. I dont have much of the typical psychological withdrawal signs, only depression and massive brain fog. Its mostly muscular and this gets worse and worse. I am totally overwhelmed, because I really dont know if I will find a doctor who  will be able to understand and take the time to deal with this.

 

I think in my case there is an underlying neuromuscular issue that has totally escalated due to benzo + gabapentin withdrawal. I spoke to a psychiatrist on the phone who said that benzo withdrawal could induce major crisis if there is an underlying mitochondrial or other neuromuscular issue, but he is no neurologist and he cannot help me. I assume that taking the benzo itself was harmful with regards to my muscle issues but cold turkey did even more damage. No idea what might happen by reinstating, but just doing nothing is no option either. I am still on 900mg gabapentin and i dont know if I also should updose or taper. I missed a 300mg dose ocassionally during the last couple weeks and I felt like my symptoms got worse, but hard to say for sure.

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Its so tough to know what is causing what but I'm pleased your doctor provided you some feedback, do you have a neurologist?

 

I dont really have a psychiatrist right now. The one I spoke to on the phone is not my doctor, I just looked up rehab facilities since there may be doctors who know more about benzo withdrawal and he called me back. But he cannot take care of me since I am not a patient in his facility.

 

I also spoke with a neurologist rhat I had seen back in august but she does not know a lot about withdrawal and what to do in my case.

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  • 3 weeks later...

Hve you heard of similar cases like mine? It is like the motor nerve system is progressively getting damaged with my muscles losing tone and muscle endurance and it is affecting every muscle in my body, even feet, hands, fingers. All is getting weaker and burns, twitches intermittently. And any tiny exercise or even standing up for a few.minutes is too much and causes further progression.

 

I feel like I may have passed the window for reinstatement amd think that could have been my only chance to stop this. I was thinking of trying NMDA receptor antagonists like ketamine, memantine and adding an SSRI to handle glutamate excitoxicity but I feel lost and dont know what to do. I am beating myself up for not instantly reinstating in october, when I started to educate myself on benzo

 

Thanks for your advice and sharing your opinion :)

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I've seen many cases similar to yours but of course, no two are alike but I agree that reinstatement might not have the desired effect.  I've watched members do it with little relief, it seems like most of us can't go home again, meaning home to the drug, it seems like its no longer welcoming after we reject it.

 

I hope you'll stop beating yourself up, I think giving your decision more time was the right thing to do, we often regret decisions made in haste. 

 

I wish you could get some gentle exercise because its not healthy to not move your body, do you have the resources to hire or go to a physical therapist?

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Thanks for your comforting words.

 

It is very horrifying to learn what benzos and their withdrawal can do to the body and what especially makes me worried is that I cold turkey'd also Gabapentin, Zopiclone and Quetiapine.

 

I am currently trying to recall and document how during the last year my condition changed and how it relates to my medications.

I can definitely say that after CT of Gabapentin and Zopiclon in August things drastically got worse. I CT'd Gabapentin on August 12th and by September 6th I was in the wheelchair. It is so crazy.

 

I am trying to do some physical therapy at home but maybe I can see a therapist. The big issue with it all is my exercise intolerance. I suppose that it has something to do with severe hyperexcitability of my motor nerves. At least thats what makes sense to me.

 

Still no clue what to do about my reinstatement. I am over 5 months off of Lorazepam. :/

 

 

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Andriyu,

 

It would be great if you could get in to see a neurologist because of your underlying condition. I think you may also want to try and find a "benzo-wise" psychiatrist or addiction medicine specialist. I don't know where you live, but you can google "benzo wise doctors," "benzo wise psychiatrists" or "benzo wise addiction specialist" in your area and see if anything comes up. It would be really helpful to have someone like the doctor you spoke to on the phone who you could see. My experience has been that neurologists are not very educated on benzos, but maybe yours will be better. I hope so! Psych docs aren't much better but there are some now who are benzo-wise, which generally means they know Heather Ashton's work. You need someone on your side over there.

 

People do sometimes reinstate and then taper down. There are a few folks on here right now who have done, or are doing, that successfully. In fact, I did that (though I hadn't waited till I was 5 months off the drug, but I did have a similar situation as yours in which I was in tolerance withdrawal for months and didn't realize it and running around to a million specialists who couldn't figure out what was wrong with me, and THEN c/t'd and it got even worse - like you, I learned it was the benzos the whole time making me sick!) So reinstating is a possibility. I did stabilize on the new dose and have been slowly tapering down.

 

But it's really hard to say if reinstatement will help the muscle issues. You definitely need to find out how much your pre-existing condition is playing into this whole thing. You wrote below: "I took a single dose of 1mg again End of August and a single dose of 10mg Diazepam early September to help sleep." How did you feel when you took those doses? That might give you some information.

 

And why did you then rapid taper off zopiclone?

 

One thing is for sure - it is not good to bounce around in doses. Also, if you decide to reinstate, reinstate on the lowest dose that stabilizes you. Because your condition is so specific, and because you are having so much muscle wasting, I really hope you can get in to see a doctor soon. This is so hard. I'm so sorry you're going through this!

 

 

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What makes it extremely difficult to give advise is the lyme desease. 75% of infected people also carry coinfections wich are often even worse.

 

The problem is that the side effects of coinfections and lyme mimic withdrawel symptoms.

 

Ive been advising lyme patients for over a decade, and based on your symptoms there is a high chance you might have bartonella and babesia.  Bart is known for muscle weakness, impairee walking, weelchair bound, nerve pain, mental instability  and babesia causes heat intollerance, disregulated temperature control (freezing/sweating), eye infection/damage/pain,  muscle cramping, random crying spells..

 

 

So, when i put that next to your story, how much is wd and how much is coinfections. I cant tell, but i would do a full tick born panel testing at Vibrant or Igenix lab to rule out bart and babs.

 

You probably have both, wd and coinfections, wich makes this very hard to give good advise, as this is a very complec desease neurologically and physicaly.

 

Being a lyme patient too, i have reduced  my benzo and others to a minimum, but i cant go to 0mg, as the chronic pain from this desease is just unbareble without a benzo.

 

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  • 3 weeks later...

Sorry for not replying earlier.

 

So far I was not able to find a benzo wise psychiatrist, they really have no clue, its incredible.

 

When I took a single dose of 1mg ativan end of august I did not experience any relief I guess. I took it in the middle of the night because I couldnt sleep. It all got worse after that but I have no way of telling it is connected to the lorazepam. In that week I had several appointments and it was hot weather, which I know are responsible for my rapid decline. But still, no idea what the benzo contribute. I have read that benzos are somewhat popular in patients with ME/CFS and can possibly prevent or minimize post-exertion malaise.

 

I quit the zopiclone like my other medications because I found out they impair mitochondrial function and may have contributed to my progressive muscle issues. I made this decision without much research on how to withdraw.

 

My situation got so much worse and I have been less careful in terms of respecting the limits of what I can do with my body without causing further exacerbation. I haven't been using my wheelchair at home anymore and it made everything worse. It really is like post-exertion malaise in ME/CFS. I can hardly take a shower without my symptoms getting worse. I feel so under pressure from my family, because they cannot understand my situation and dont believe what I am telling them. I am staying with my mum currently and she is at her limit and is worrying about me and my family wants me to get into a mental health facility but I know they have absolutely no clue about my situation and wont believe me either.

 

I was in a university hospital and EMG showed abnormalities for which they did not provide any explanation so far. I have to wait for the final report. They also did not find any indications for neurological lyme disease in the cerebrospinal fluid. Unfortunately the doctors there had no idea about benzo withdrawal and I could not discuss anything with them.

 

I dont know what to do. It has gotten soso bad. I am afraid I missed the window to reinstate. I just dont know.

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  • 3 weeks later...

Please anyone talk to me. I was not able to reinstate, I am so angry on myself.

My consition got much more extreme over the past few weeks, it is looking very bad. I started olanzapine since a wuite well educated person (not a doctor) suggested it but things got much worse and now i am stuck with olanzapine as well. My brain is totally shot and my body burns. I got so weak that I can hardly stand up. Any normal person would get into the hospital. but I did not get proper help last time so I dont knoe ehat they would do this time.

 

I am so lost. Please pray for me.

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Do you still feel you have Lyme or did the test you had rule that out?

 

Do you believe the Olanzapine has negatively affected you and if so, are you thinking about tapering off of it?

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Thanks a lot for the feedback. Unfortunately, my symtoms just progress rapidly. I dont have much of the typical psychological withdrawal signs, only depression and massive brain fog. Its mostly muscular and this gets worse and worse. I am totally overwhelmed, because I really dont know if I will find a doctor who  will be able to understand and take the time to deal with this.

 

I think in my case there is an underlying neuromuscular issue that has totally escalated due to benzo + gabapentin withdrawal. I spoke to a psychiatrist on the phone who said that benzo withdrawal could induce major crisis if there is an underlying mitochondrial or other neuromuscular issue, but he is no neurologist and he cannot help me. I assume that taking the benzo itself was harmful with regards to my muscle issues but cold turkey did even more damage. No idea what might happen by reinstating, but just doing nothing is no option either. I am still on 900mg gabapentin and i dont know if I also should updose or taper. I missed a 300mg dose ocassionally during the last couple weeks and I felt like my symptoms got worse, but hard to say for sure.

 

Depression and massive brain fog ARE typical benzo WD symptoms. I suggest you hang tight and maybe consider an AD to help with your mood. You will get better. Reinstating might not help even in the short term and could set you up for more suffering. I wouldn't do it imo

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