Should I reinstate?

[[Lu...]]

Alright so some of you may know my story a bit as I have talked with several of you over the last couple weeks and you have all been a godsend. But for the sake of my next question I will try to articulate my history with benzos to the best of my ability.
 

It started about 2 and a half years ago my psych prescribed me Ativan for panic disorder, was on for about 6 months. Made me very very depressed and was having interdose withdrawals and didn’t even know it for a while. He then switched me to kolonopin with no taper which caused some weird side effects but depression got even worse and had horrible emotional blunting so I tapered off it on my own. Bad W/D.

 

I was off for MAYBE a month or two (so was probably still in W/D) of some kind. Then I had a bout of myocarditis which involved an ambulance ride and a 2 day hospital stay which absolutely jacked my anxiety. They gave me attivan in hospital. Then got home and immediately started taking kolonopin again. (1mlg daily) same as previous dose. Was on again for maybe 6 months and had similar side effects so I did a faster taper that time and went through w/d again. A little bit worse that time.

 

Then took emergency doses of Ativan if I was ever having a really bad panic attack. Began to make me nauseous though. So psych switched my emergency prescription to alprazolam which brings me to my current predicament. About 6 weeks ago I began to have some high blood pressure which some cardiologist was worried about (hereditary and probably exacerbated from numerous benzo withdrawals) so they put me on a BP medicine which made me incredibly light headed and almost passed out several times (it was too high of a dose in hindsight doctor stated)

The faintness and weird body sensations caused my anxiety to absolutely sky rocket as I thought I was having serious cardiac issues so I took the alrpazolam between 0.25 and 1mlg a day for almost 3 weeks. Maybe not every day but atleast 5 days a week for those few weeks. Began having severe neurological side effects in between doses (twitching tongue, lips, face, grimacing; muscle twitching all over) so I stopped cold turkey since I thought I was only on for about 20 days I would be fine and hoped the symptoms would stop. They didn’t. They got worse, way way way way way worse.
 

I stopped on February 9th so I am about 4 weeks out from the CT. Everything is horrible. A million times worse than any of my prior withdrawals. And seems to be worsening on a daily basis. Extreme twitching all over body, crawling feeling under skin of legs and feet. Still having the facial and tongue twitching but that one has abated slightly and been replaced by far scarier ones. Extreme DP/DR which comes and goes with no particular rhyme or reason. Muscle weakness in arms and limb fatigue. Occasional crashing waves of depression.
 

also Debilitating panic attacks atleast once a day sometimes twice. Now I’m having extreme unsteadiness, like I’m being pulled to one side and then the other and extreme vertigo. My equilibrium feels way off feels like I’m almost on a tilt, it’s unsettling beyond words. Episodes of pounding heart and sweating. Extreme heat intolerance. Feeling like I’m not myself and my own body and consciousness feels foreign to me which can last from 10-20 minutes at a time. And an absolute array of other symptoms.

 

You get the point. I’m not doing well. I run a business and have an almost 4 year old daughter and wife who mean the absolute world to me. They bring me joy beyond comprehension. I want to be myself again. I feel so so guilty and just want my life back. I need to be functional as I have mortgage and car payments and being a self employed entrepreneur I do not have a fall back for a work leave. My wife is a HS teacher and does not make enough to support our family.

 

I know this is very long winded post and I apologize. My question is do I reinstate to try and regain functionality? What benzo do I reinstate? What dose do I reinstate? My current psych is completely clueless and seems to not understand why I am feeling this way. He’s truly a very bad and dangerous doctor and I resent him deeply for getting me into this mess without any knowledge on possible ramifications of these horrible medicines. I have an appointment with a new psych at end of this month. But I still have recurring script of attivan (which he sent after I told him about side effects I was having from alprazolam).

 

I am truly desperate right now though and feel I am teetering on the edge of being fully non functional. I never felt good even when on benzos but this is so much worse. Do I ride it out and pray it goes away soon? Would a reinstatement and then slow taper possibly make this less debilitating and scary? I am absolutely terrified about reinstating and adding yet another WD to the mix but maybe it will be beneficial. It has been 4 weeks since last dose and from what I’ve read it may not be a good idea. But I am desperate and suffering. Idk what to do. Please help me. Any advice would be so greatly appreciated. Thank you all so much for the continued support from the bottom of my heart ❤️ prayers to all 

Edited March 10 by [Lu...]

[[je...]]

Hi @[Lu...]

I haven’t read your post but may I suggest you edit it to add some paragraphs? It’s quite a long story and visually it’s very difficult for those of us in withdrawal to read and follow so much text on screen without any paragraph breaks. 

[[Lu...]]

@[je...] yes good idea I apologize

[[Lu...]]

@[je...] just did to best of my ability, hope that helps. Thank you 🙏 

[[Ma...]]

I tried to read through your entire post and basically it seems you’ve never stabilized when taking any benzodiazepine.

People reinstate so they can go back to a functional, normal level. Has that actually ever happened?

There are a lot of risks going on, off, on again as it destabilizes you even further.

If you do decide to reinstate, which might not work, which might actually make things worse, I would encourage to do so at a small dose, slowly increase until stabilized. That could take 6 weeks or more. And you just HAVE to keep a steady level in your system. Not 1 here, 1 more because of a panic attack. You can’t chase your symptoms with more medication.

You could always try an alternative medication like Gabapentin, which mimics GABA and is used a lot. Side effects but many tolerate it extremely well. Trileptal is another option. I’m not a doctor in any sense of the matter.

I would also suggest you research, research and research more to make the right decision for yourself.

Edited March 10 by [Ma...]

[[Lu...]]

@[Ma...] thank you for the reply and taking the time to read my post. definitely have never been great about taking same exact dose every day or same time so it’s hard to tell. I never exceeded my prescribed dosage though. My doctor failed me in explaining the dangers of not being very careful and consistent with dosage with these medications. Idk if i ever felt fully stable I think I maybe felt close several times. But I never ever felt anywhere near as bad as this I know that sure. 

[[Ma...]]

Your in withdrawal. Have you read the Ashton Manual? It will explain in detail what to expect. You might just want to push through it and get it behind you.

How long will it take? Who knows, but for many not long and you haven’t been on them for very long. Will it be easy? No. But life following will be SO MUCH BETTER.

The vast number of doctors have no idea what they are doing when prescribing these drugs. Even people in the medical field take them not knowing, with grave consequences. That’s why it’s up to you to do the research, to advocate for yourself going forward.

You don’t want to risk being kindled, which is somewhat controversial, and you don’t want to risk becoming protracted.

Unfortunately there’s just no easy, quick solution.

You’ll receive a lot of support here.

Edited March 10 by [Ma...]

[[Lu...]]

@[Ma...]i think you may be right that the only way out is THROUGH. Reinstatement is so tempting just to end the suffering even for a minute. But I think I feel deep down it’s not the right answer. I am just scared my life will fall apart if I become unable to work and function and be a good parent. I feel as I have stopped and started them several times over the last couple years I may already be kindled and that’s why this one is so much worse than previous withdrawals. I will read the Ashton manual thank you for suggestion. Is it normal for it to be still getting worse at 4 weeks out? 

[[Ma...]]

Yes, it’s very normal. It’s not easy so please practice managing it 1 day at a time.

And giving into temptation for a momentary gain will not severe you for the long term gain.

Be patient with yourself as your body recovers, and it will!

[[je...]]

@[Lu...] I’m so sorry you’re going through this. I can imagine how stressful this must be as a provider, partner and father. You have probably been told about kindling. If not I can provide a link. This post below has by far been the most valuable in terms of deciding about reinstatement IMO. I beg you to read it carefully. It doesn’t argue for or against it it just gives you the information for both so you can make an informed decision. 
 

If you do decide to reinstate please do so little by little. I have seen desperate people jump into reinstating expecting miracles and ending up on enormous doses of benzos that defies logic. 

Edited to add: this post also has information on how to go about reinstating at what doses etc. 
 

 

[[Te...]]

Hello, I tapered off of Ativan many years ago so I’m hoping I can offer some help. 
it does sound like you are in withdrawal, so in my case years ago, the doctor had me reinstate with a very very small amount. And then taper off correctly. However this ofcourse should be checked with either a neurologist or psychiatrist for proper management as we’re all different. I however took an 1/8 mg of Ativan in the am , 1/8 at lunch , and 1/4 mg to sleep. 
once I stabilized, I dropped the lunch dose completely for 2 weeks. Then I lowered the pm dose to 1/8 for 2 weeks. Then I dropped the pm dose for 2 weeks, and then finally the am dose . It’s a very slow process but Ativan seemed to be the mildest of the bunch to deal with for me . 

[[je...]]

Hi @[Te...]

Welcome to BenzoBuddies!

Thanks for sharing your experience.

[[Lu...]]

@[Te...]thank you for sharing your story with me! I definitely will consider it. I am scared to potentially kindle myself further but I also need to function. Going to weigh my options for sure, if I do decide to reinstate it will most likely be attivan. Do you have any lasting effects from the withdrawal? How long were you off before you reinstated 

[[Te...]]

How long have you been off of it , I’m assuming you’re off as you are going thru WD?

I was off about about a month I believe? The docs put me on Remeron to sleep but that screwed me up too. Not fun tapering off that either. 
but the good news is , once you are tapered off , as long as it’s done properly, it’s forever gone. Occasionally I’d feel a little something maybe for a month, but then nothing. And I was on it a long time. 
im back here today because I took some melatonin to sleep and I think it sparked my gaba receptors and I feel withdrawal again. Slight but it’s uncomfortable. 
2 things never to take once your done with this, besides benzos I mean, are NyQuil and melatonin. They both wake up gabas and you don’t want that. 
 

[[Te...]]

One more thing, if you’re far into your recovery then see if you can hold out reinstating.but you don’t HAVE to suffer. It’ll never be like drinking a glass of water , you do feel things, but you can lessen the effects so u don’t have to suffer . 

[[ne...]]

I shook my head up and down reading your post as I can relate to so much of your history and how this all happened. 

You are absolutely not alone. You have a brain/chemical injury and willpower does do something in this but it's not going to bring you to full health right now.

I was ONLY on for 5/6 weeks and tried coming off CT for the same reasons as you. Hell broke loose and on day 8 I reinstated to taper for 8 months. I got "some" relief but the damage to my system was done and honestly, the 8 months were a waste of time for me. It was also a HUGE mental toll knowing I had to face a taper and everything that comes after it but at the time, it was the choice I felt I had to make so I know where you're coming from. I am now 15 months off and still deal with a long list of symptoms and discomfort. I can function so that is a huge plus but I still have my days affected by this crap. 

Now many heal much quicker. You need to decide if you HAVE to have possible comfort from reinstating right now (it doesn't always bring it) or if you guys can work around this as a family, stay off and get to healing because it's only when you stop that your brain can try to figure out how to heal.

You will read a bunch of different answers in this and there will be many different paths for what worked for each person. I empathize with you a ton as I have two young children going through this but my job is from home. My husband tried to understand and has done a good job but a person on the other side can only grasp this so much. 

This is an injury and you need to treat yourself with compassion and so do those around you. See what you can handle but if you can't do it all see if you can take a temporary leave from work, etc. I know that sounds terrible but do what it takes. Also, some heal very quickly so you may be past this soon. Remember that. 

[[Lu...]]

@[ne...] this brought tears to my eyes reading! Thank you so much for taking the time to write that. That actually just gave me such a rush of relief because I keep feeling like since I stopped and started several times with different benzos that I am somehow permanently damaged and different from others experiences on here. I am so glad to hear you have seen some progress and that gives me some much needed hope. I think I am going to try and white knuckle through this. It seems reinstatement may just drag this out and may not even provide any respite. I am trying to adjust my mindset and be brave through this but at times it seems impossible. the symptoms change almost hour to hour for me. Again thank you so much for the reply this is a very isolating experience because like you said our spouses can do their best but they can’t truly understand the warzone that is waging in our minds and body. So your post has truly made my night! This site and you all are truly saving me right now. I hope you continue to heal and wish all the happiness in the world to you and your family ❤️

[[ne...]]

Keep using this group and there are good ones on FB and Reddit too It is terrible; there's no other way to put it but hang on. Read success stories. Distract yourself. Educate your wife if need be. You will get there. 

[[Lu...]]

@[ne...] I absolutely plan on it. Quick question, Did you have any dizzyness/vertigo or equilibrium problems by chance with your taper or CT? And if so did you find any supplements/treatments that relieved it. I think if I am going to fight through this without reinstatement that is the one symptom I will need to try and remedy somehow

[[ns...]]

3 hours ago, [[L...] said:

@[ne...] I absolutely plan on it. Quick question, Did you have any dizzyness/vertigo or equilibrium problems by chance with your taper or CT? And if so did you find any supplements/treatments that relieved it. I think if I am going to fight through this without reinstatement that is the one symptom I will need to try and remedy somehow

Lucas hi again, hey as for supplements, there really isn't anything ive found that I can take. Most here can't take most anything. You may find certain foods bother you, sugar, caffeine  any type of stimulant is really not good. Some can tolerate these but most cannot. Anything that revs up your symptoms will make u uncomfortable. Keep that in mind ok.

Otherwise, healthy! Healthy food, healthy lifestyle is best. 

Your trying to heal  remember that. Think of this as a brain injury. Do all u can to help your brain to heal right? So, reading, writing, excercise as much as u can but stretching is a must first. Stay hydrated, keep a ck on your sodium. Fluids are essential but you can flush minerals and sodium really fast. Be careful with this.

Carbs, remember simple carbs are sugar,  white bread, rive etc. It's ok once in awhile but not too much.

Same with coffee. Teas. Decaf. We learn as we go what not to do buy I wanted to give u a heads up.

I was doing pretty good. Then I ate a chocolate muffin, it was great! Then I ate another the next day,  it was ok. Then, I ate another, and ice cream and a donut! Now I'm miserable!

I knew better but it was just so easy to slip!

Get as much fruit as you can without added sugar. Vit d, c e a b vit are very important. You can get most from foods of u ear right. Research online what foods have these vitamins etc.

I've given you a lot to think here so I'll stop here.

If u have any questions, there's someone to talk to more than likely. 

I'm hoping for the best for you Lucas. 

I'll keep you in my prayers 

Take care 

Ns

[[Lu...]]

@[ns...]thank you for the wonderful advice on diet, I actually booked an appointment with a nutritionist to help me formulate a brain healthy diet moving forward. He is supposedly very good. I am SO desperate to try and find a way to help this dizzyness/swaying/vertigo/pulling. I feel like I’m being pulled forward and then side to side it’s almost to the point I am scared to go to work for fear people will think I’m drunk or on drugs. I’m so scared of this!!!

[[ns...]]

15 minutes ago, [[L...] said:

@[ns...]thank you for the wonderful advice on diet, I actually booked an appointment with a nutritionist to help me formulate a brain healthy diet moving forward. He is supposedly very good. I am SO desperate to try and find a way to help this dizzyness/swaying/vertigo/pulling. I feel like I’m being pulled forward and then side to side it’s almost to the point I am scared to go to work for fear people will think I’m drunk or on drugs. I’m so scared of this!!!

Lucas, try to worry about what people think ok, it's not helpful and you need to focus only on heaking and what gives u joy!

I'm glad you found nutritionist, seems we all need one. I'm unable to find one here due to insurance. You'll eventually learn what works for you. What u can tolerate and so on. Some people don't have any issues with anything, I hope that's u!

Try not to focus on you're symptoms Lucas, it's very important. Change your focus change your mind!

Sounds like your a step ahead of most by getting a nutritionist and with everyone here I hope that continues. 

Remember, benzos lie!

So do our emotions at times. They are feelings and the best we can do is to keep as positive attitude as possible even when it's hard. We all need compassion though, we are human and it's OK to let it go sometimes and release! It's healthy so try not to hide your pain but your symptoms will dig if you focus too much on them.

I've said it before, my symptoms remind me of a little spoiled child screaming for my attention and when I give them attention, they scream louder the next time.

So when that spoiled Brat starts in, I ignore it and it eventually gets quiet, my symptoms relax and i move on.

Just an analogy lol

Ok, better go, that brat is starting in again!

Take care, 

Ns

[[wi...]]

19 hours ago, [[L...] said:

I keep feeling like since I stopped and started several times with different benzos that I am somehow permanently damaged and different from others experiences on here

Nope, you are not different. Trust me.

[[Lu...]]

@[wi...] thank you for the reassurance my friend 🙏 did you deal with any vertigo/dizzyness/ balance issues during w/D?

[[Lu...]]

@[ns...]hahaha I love that analogy!! I hope you feel better soon ❤️ I can ignore most of the others but the vertigo is so disruptive that it’s almost impossible for me to try and ignore  I wish so badly there was something to alleviate this symptom. I wonder if maybe some Dramamine or something would help