Please help me, please!

[[ba...]]

Every buddie I have interacted with says ataxia and all other symptoms go away. It does take a long time, and can be hard to notice when the severity starts to decrease.

 

I am going to suggest a way for you to keep track . Start a progress log:

 

From Colin:

Logs are intended for you to chart your progress. You should note changes to your taper plan, symptoms, diet, life stresses, and any other information you think might be useful. You might also add some personal thoughts, but remember, this board is not the place for feedback.

 

Progress log: http://www.benzobuddies.org/forum/index.php?board=87.0

 

You can list where you are at, then make notes as you go along. In time, you will see that your body is making progress.

I use mine to also track my behavorial goals and exercise. I note when I have a very productive day in spite of the pain.

 

I note waves, and note when it is better.  I note complete blow outs. (When I completely fall apart.)

 

I also post useful information when I find it.

 

I also write poems and post useful information. I also vent my anger.

 

I keep track of when I cut, and how it affects me. I am on 2 medications, so  sometimes a cut on one or the other will give me a setback. It is a challenge on 2 meds.

 

It gives you a tool to not only monitor your progress, or decline, but to look back when a symptom shows up, and go, Oh yeah, I had that last month for a few days.

 

I don't think we see the progress, it is so small. The blog helps you document your experience, and in time, you will see it, bit by bit.

 

[[Wh...]]

Skyglider., I'm so sorry you are going through this. I'm in a similar situation and like you can not see a future like this. I think someone made a good point about switching over to diazepam so you have a longer half life and interpose withdrawal won't be quite so bad. Maybe you can talk to your doctor about that. I am with you in spirit.

[[Sk...]]

I am sorry you find yourself trapped by these horrible drugs as well. You said you are stable. Does that mean you can sleep at night? I have terrible insomnia in addition to everything else. My life is a nightmare. I am down to 0.046 mg/day, or 0.86 mg Valium equivalent, and I don’t want to updose. I know I wasn’t stable on 0.35 mg/day either, so I fear I would have to go way up in dose above 1 mg to find any relief at all. Then I think I would be trapped into taking this poison for life, and I would rather die than do that. I also don’t want to take any other drugs anymore, and your fear of a hard withdrawal from Gabapentin is a good point. I only took Clonazepam for a little sleep, but it didn’t really help that much with sleep, and now it is turning into a death sentence. You said you took the benzo for restless leg syndrome. Well, I never had that until I tried to taper the Clonazepam. It came on a couple of weeks ago, but isn’t happening right now. It seems, anything that the benzo “treats” comes back with a vengeance once you try to quit the benzo. I fear that you will find that your restless legs will be much worse once you taper low enough. I am truly sorry for you. How these drugs can still be legal and handed out like candy is beyond me. It is a testament to the power of big pharma.

[[on...]]

I am sorry you find yourself trapped by these horrible drugs as well. You said you are stable. Does that mean you can sleep at night? I have terrible insomnia in addition to everything else. My life is a nightmare. I am down to 0.046 mg/day, or 0.86 mg Valium equivalent, and I don’t want to updose. I know I wasn’t stable on 0.35 mg/day either, so I fear I would have to go way up in dose above 1 mg to find any relief at all. Then I think I would be trapped into taking this poison for life, and I would rather die than do that. I also don’t want to take any other drugs anymore, and your fear of a hard withdrawal from Gabapentin is a good point. I only took Clonazepam for a little sleep, but it didn’t really help that much with sleep, and now it is turning into a death sentence. You said you took the benzo for restless leg syndrome. Well, I never had that until I tried to taper the Clonazepam. It came on a couple of weeks ago, but isn’t happening right now. It seems, anything that the benzo “treats” comes back with a vengeance once you try to quit the benzo. I fear that you will find that your restless legs will be much worse once you taper low enough. I am truly sorry for you. How these drugs can still be legal and handed out like candy is beyond me. It is a testament to the power of big pharma.

 

WOW, your post rings so true for me. RLS is the worse thing to experience and not be able to get rid of. 

[[Wh...]]

Skyglider, I'm so sorry for all you are going through. Is there any way you can switch over to Valium? It has a longer half life so youre less likely to have interdose withdrawal.

Klonopin has ruined my health too. Keep coming back here where you can get regular support. You don't need to be alone in this.

[[Sk...]]

I tried to cross over to Valium, but I did not tolerate it very well, so went back to Clonazepam. Now, I just cut to 0.034 mg/day, and my symptoms are horrible, as per previous post, only worse. As I previously indicated, no matter what I do, hold, updose, or cut, my symptoms just keep getting worse. However, lately cutting causes my symptoms to become unbearable. I think I am at a dose now that is below my tolerance level, and that is why I am having such a hard time cutting. This brings me to another question concerning tolerance. It is well known that if one continues to take a fixed dose of a benzo, eventually your body gets used to it and you need more of the drug to achieve the same effect as previously. It follows that if you were functional on a certain dose and started cutting the dose, you would eventually cross into that tolerance threshold level and experience withdrawal symptoms. When this happens, you are supposed to hold at that dose until you become stable. However, why would one expect to become stable, because holding a dose means that you are in the case I just mentioned three sentences ago. That is, wouldn’t one expect to get worse, not better, in time while holding? Obviously, not everyone reacts the same way to this poison, but for me that certainly seems to be the case. If I hold, I get worse in time, not better. In such a situation, what is the best course of action? One other buddie had a thread that said “Every cut is like a cold turkey”, and I seem to fall in that category. If true, should I grit my teeth and continue cutting on a fixed schedule, even if the withdrawal symptoms are bad? I really am against increasing my dose at this point, so there aren’t many options for me to follow. Have any of you found yourself in a similar position. All I can do at this point is hope there is a resolution.

[[Pa...]]

I so wish there was an answer for you but it seems like you've looked at every possible scenario and have just about come to the conclusion that powering through this is the answer. 

 

Have you talked to the folks on the Long Hold Support thread, they might be able to give you their perspective. http://www.benzobuddies.org/forum/index.php?topic=153201.0

[[Sk...]]

Thanks Pamster, I will check out that thread. Do you think my best course of action is to power through at this point in time? I often wonder if I would have been better off not reinstating to 0.350 mg eight months ago. Thoughts?

[[se...]]

I think your body is responding to the lack of the drug in your system.  I don’t believe you have fully stabilized.  If you continue to taper I would expect symptoms after you reach your last dose.  I think this dose is doing next to nothing for you.  I could be wrong, I am not as low as you are.

 

I am so sorry you are struggling, this is just so difficult to navigate as everyone responds so differently.

[[Aj...]]

I have all of that.

I have numbness through my whole body inside and out.

I can feel scratch but it feels like under rubber.

I can pinch my self as hard as I can and can’t feel it.

I have it inside my mouth as well and have no internal visceral sensation.

I know several other ppl who have it.

They are getting some sensation back at times about 2 years out.

All my muscles are rigid and crushing my spine lengthwise. I can’t even lie on my back so am stuck lying on my side all can being crushed.

I have dozens of other symptoms.

I reinstated several times and tried loads of other meds and nothing helped and on the end I had to retailer slowly twice.

I am now off 5.5 months.

I speak to others in the same situation.

I am aware of one woman who spent 3.5 years lying in agony on her floor wearing diapers. She couldn’t even get on her bed.

At 3.5 years much of it just let up all of a sudden.

 

[[Pa...]]

Thanks Pamster, I will check out that thread. Do you think my best course of action is to power through at this point in time? I often wonder if I would have been better off not reinstating to 0.350 mg eight months ago. Thoughts?

 

I haven't read enough of your posts to give you a fully informed answer but to tell you the truth, even if I had, its an impossible question to answer.  I know you want guidance and I wish I could give it to you but every single one of us is going through a different process.  We all have benzo's in common but how we react to them is different. 

 

I'm so very sorry I can't tell you what you should do but I'll be here to support whatever decision you make. 

[[So...]]

If I was not willing to increase my dose, then .....only options would be to hold and see if stabilize (although probably too low)

Or keep cutting.

I mean that's basically it. Because the other options are updosing or doing crossovers.

I know it is ALL awful!!!!

 

But I do want you to know that, yes the symptoms CAN be this brutal. It seems impossible when it's happening to you, I know it really does. But, I want you to know that I and others have made it through it. I know that for sure.

Much love

[[Ni...]]

Skyglider

So sorry you are suffering. I to have had a lot of the same symptoms as you. Im finally off but it has not been easy. I can only hope and pray we get through this. I know we can. Don't give up.

[[Sk...]]

Nike0911,

 

Sorry to hear you are in same situation as I am. Do you find that you are feeling better at all, now that you have been off for two and a half weeks, or are you continuing to feel worse? Hopefully, in time we will both feel better and recover.

[[Ni...]]

Skyglider

I have had a couple of windows but its been hard. I put my body through a lot of trauma this past year with everything I went through. For me things got worse when I hit tolerance. No one tells you the dangers. Just tell you your good if you don't abuse it. I had no clue any of this could happen. I don't want to ever start back cause I know it will just set me back. I do get a bit discouraged with the time lines but thank God every day im here. It is so hard. Reach out any time.

[[Sk...]]

Nike0911,

 

Yes, the doctors I dealt with didn’t have a clue how bad benzos are. They should not be allowed to prescribe that poison, if they are that ignorant. They hand that poison out like it is candy, and it ruins people’s lives. The detox centers also are clueless and cast you into the same lot as drug addicts, even though you were just following the advice of a stupid doctor. Ripping you off the benzo and subbing in another one for rapid tapering is just plain stupid. Most detox centers declare victory because you are pff the original benzo, but doing that quickly unmasks the true damage the benzo did to your central nervous system. I entertained the idea of going to a detox center and spoke with the heads of several of them. They all follow the same playbook that works for heroin, but not for benzos. They send you home with a thirty day supply of Gabapentin, and let you go into protracted withdrawal. I asked them what happens after that time when the true benzo damage becomes apparent and the patient is suffering horribly? They all said if that were the case, it is because they are dealing with an underlying issue, and that it was not withdrawal because the drug is no longer in their body. Frankly, they are full of $hit. Also, I was prescribed Clonazepam for insomnia, and it is known that benzos can irrevocably alter sleep patterns. What happened to the medical community’s motto of ‘first, do no harm’? I would have been better off taking heroin for sleep. At least that doesn’t destroy your central nervous system in just a couple of months, and you can get off of it much easier than you can get off of benzos.

[[Ni...]]

I think they are all trained to say the same thing. Pamster another person on here post a good Symposium on Benzos where I think they are studying it more. I hope to really help someone some day but its hard taking care of me at this point and I have a family to. How can they not know with the Thousands of people with the same symptoms. So disheartening.  Keep me updated.

[[ba...]]

Sky

 

Hang on. Just hang on. Take it in small segments of time. an hour, 6 hours, a day. When it gets this bad, it does help to think in segments, as opposed to projecting it's never going to end.

 

I don't think there really is much of anything you can do that will alter how your brain and body are acting, and how acute it is. I suspect your CNS has reached the point where it is screaming because it is working so hard to try and find homeostasis.

 

I think up dosing would cause your brain more confusion.

 

Holding is fine, but it may not help.

 

Continuing to cut is horrible, I know, but take it small and slow.

 

I admire you so much for JUST KEEPING GOING. It is unbelievable what we tolerate, and what we go through, but there really is no way out but to keep going.

 

You will in time, notice symptoms easing.

 

I want you to know you will come out of this. It is a matter of your own body and it's rate of healing. At the end of a taper, it usually gets very intense. What you are experiencing is normal. Not everyone gets as sick as you, however, it is normal.

 

Thank you for sharing with us. I hope with all my being that being able to write about it, and know we care, and your not alone, helps.

 

I look forward to a time in the future when you can write that you have noticed things have eased off. It may be a long time, it may not. But it will happen.

 

I am more focused on how far you have come, it is amazing. You are almost done. I am so impressed by your tenacity. I see you being closer every day to healing, and with another day of this agony behind you. Perhaps try and think about that.  Your much closer to healing than you are to being dependent and sick and damaging your CNS with this poison.

 

 

 

 

[[Sk...]]

Baddove,

 

Thanks for your words of encouragement, I needed them. It does seem like this will never end, or even get worse, but I have no choice but to continue to cut. I am truly horrified by what Clonazepam did to my body and mind, and all I can do is hope the damage can be reversed in time for both of us. I read for some the tapers get easier towards the end, but for others it becomes more intense. Unfortunately, I appear to be in the latter category. If I cut .002 mg per drop, I have 17 more to go, and I am not looking forward to them. I also fear what awaits me after my last dose. I developed POTS during this ordeal, and it has ruined me physically. I read that for some, even the POTS symptoms resolve after getting off of this horrible poison. Again, all I can do is hope at this point. Thanks again for your kind words.

[[Sk...]]

All, I thought I would give a status update and would like to hear from people who actually healed from the damage benzos do to the body and mind. I have been suffering terribly, and I continue to get worse and worse as time goes on. My skin burns, my muscles are tense and rigid and hurt all of the time. All of my joints pop and crack when I move. I can't turn my head from side to side because of the pain. I have been dizzy since I started tapering over two years ago. I cannot sleep for more than 1-2 hours per night. I never get sleepy tired anymore. I have migraines all of the time. I have light and sound sensitivities. I am losing coordination throughout my body. The list goes on and on. I really need to hear that recovery is possible. Please let me know how you stand in your recovery efforts.

[[ba...]]

I do not have an answer, nor a personal success story for you. I just want you to know your not alone and I, and others , care. Hopefully someone can come forward and help you figure out a plan for getting your sanity back.

[[Pa...]]

Skyglider, are you benzo free?

[[sp...]]

its distressing but remember one thing. YOU ARE COMPLETELY DIFFERENT THAN ANYONE ELSE ON HERE, AND WILL RESPOND DIFFERENT.

 

I was on Xanax 10 years ago and crossed over to valium and it took me all told about 6 months to taper off the valium, and guess what? After a about a few weeks i felt GREAT. I went on to live a life benzo free sleeping great and felling like a million dollars for 10 YEARS.

 

I got divorced recently after 27 years, lost my wife, kid and house and didnt care about life anymore.....started drinking and yep taking xanax again even after all that. And well...here i am again about to start another Valium taper...but guess what again. I KNOW this time i will make it, and live another 10 years symptom free.

 

Take everything everyone says here and try not to compare yourself, your results WILL VARY. Get completely off this poison and you WILL HEAL. Its not up to you, our bodies and brains are amazing and know exactly what to do to heal and WILL DO IT. Keep going and get off this garbage and you will see. Dont give up now.

 

I was on my knees crying with worst symptoms ive ever had basically switching straight over to valium from xanax, had such FEAR ive never felt anything like that in my life. Constant panick attacks. DO what you have to do to get off that poison, and thats just what it is....poison created by man and sometimes i wonder if man wasnt helped along the way by the devil himself this shit is so bad. Dont let it beat you. Get off it. You can do it.

[[wi...]]

its distressing but remember one thing. YOU ARE COMPLETELY DIFFERENT THAN ANYONE ELSE ON HERE, AND WILL RESPOND DIFFERENT.

 

 

 

 

Amen to that, and I am so sorry you are suffering.