Hi Marie 33
I take Lyrica 100 mg in the morning, 100 mg at 2 pm, and 200 mg at bed time. Lately, this not completely control my pain. So the doctor has told me yesterday I can increase the dose with another 100 mg in afternoon. I have not tried that yet, that is a very high dose. The maximum dose, the doctor said, is 600 mg daily, but that is very high, usually it is 400 mg a day.
I have recently seen a neurologist that is a teaching professor in neurpathy. He has sceduled some tests. I hope this doctor can help me find the cause for this terrible neuropathy. The most scary and disturbing, is the same as you also have, the vibratin buzzy feeling that I feel coming down my back and vibrating in torso. This new doctor told me that this symptom is also neuropathy. I also have leucocytoclastic vasculitis, and have a rheumotologist that is treating me and so far, we really have not found any other autoimmune disorder, other that I do have hypothyroidism. And I do have old herniated cervical disc.
Yes, I find the Xanax helps me at bed time. I have had many, many sleepless nights due to vibrating and buzzing in body, and burning all over.

How are your symptoms with the vibrations in torso? Do you have an autoimmune disease? Do you have any muscular disease? What testing did you have?

[QUOTE=Synnove;966561]Hi Marie 33
I take Lyrica 100 mg in the morning, 100 mg at 2 pm, and 200 mg at bed time. Lately, this not completely control my pain. So the doctor has told me yesterday I can increase the dose with another 100 mg in afternoon. I have not tried that yet, that is a very high dose. The maximum dose, the doctor said, is 600 mg daily, but that is very high, usually it is 400 mg a day.
I have recently seen a neurologist that is a teaching professor in neurpathy. He has sceduled some tests. I hope this doctor can help me find the cause for this terrible neuropathy. The most scary and disturbing, is the same as you also have, the vibratin buzzy feeling that I feel coming down my back and vibrating in torso. This new doctor told me that this symptom is also neuropathy. I also have leucocytoclastic vasculitis, and have a rheumotologist that is treating me and so far, we really have not found any other autoimmune disorder, other that I do have hypothyroidism. And I do have old herniated cervical disc.
Yes, I find the Xanax helps me at bed time. I have had many, many sleepless nights due to vibrating and buzzing in body, and burning all over.

How are your symptoms with the vibrations in torso? Do you have an autoimmune disease? Do you have any muscular disease? What testing did you have?

Hi Synnove
Sorry you are suffern with this horribe "disease". You are on a high dose of lyrica, with not much relief. I thought 400 was the max. Do you have any side effects? I can not get past 100 day! My neuro/doc wants me to start amytryptiline (elavil) start at 10mgs. Have you tryed Elavil this yet? maybe you should consider tryn elavil instead of increasing your Lyrica, seems you are already "maxed" out and its not helping you too much. They say elavil can help you sleep too..
I get terrible painful pins & needles in my legs mostly. Sometimes the pins & needles feel so "tight" , it gets so painful. I also get buzzing and tinglin in my legs ,its not in my torso, but I feel buzzing up and down both legs and sometimes it feels like vibratory feelings in my legs..uugh! I also get Painful pins & needles in my fingers & toes, burning under my feet, even burning patch-like feelings on my back and on my stomach. Im startn to feel tinglin on right side of face and around my lips amd inside my mouth. Im a mess..Its not everyday but its constant and sypmtoms move around!

I had many, many tests (since 2011) so much bloodwork in the last 2 yrs and more tests done recently, (except for the Athena Lab bloodwork-which is supposed to help find hereditary markers).Everything comes back NORMAL. I do not have any autoimmune disease, no muscular disease, twice I had EMG & NCS, both times a yr apart were normal. I feel well , I have strenght but have all this pain , this is ruining my life! Finally in Oct 2012 my Neuro did punch skin biopsy, that showed My SFN!! normal range is 5.6 and above, my test showed 4.70. No other signs of any diseases or disoders. I guess I am fortunate in that way, but I am suffern with so many symptoms and still have no cause!! I live in pain and fear from day to day not knowing where this Beast will progress too. So far no autonomic sypmtoms, but lately I have been feeling little bouts of feeling warm & sweaty even when its not warm in the room, guess its startn to mes with my sweat glands(?)..hmmm.

Hope your doing better today, How do you like your "teaching professor?" I have been to 6 Neurologist , I Live in Long Island NY, I have been to the South Shore and now im seeing a "teaching" Neurologist on the North Shore at Stony Brook Univ. I have an appt for 3/20 with a Neurologist at Cornell/Weil Mediical Ctr in NYC., Im actually contemplating if I should go! Where do you live? Can you relate to any of this crap!! No ryhme or reason..just suffern that has taking away my quality of life sorry this is so long....

I understand the need for some relief. And Benzos like Xanax, etc do work in the short run.

But in the long run the pain, zaps, and whatever will increase, and you will have breakthrough events until the next pill. Basically they are affecting and enhancing inhibitory neurons and have some anti-seizure effects. Valium is given for post-icthal seizure stabilizing when people have grand mal seizures. This is to prevent slipping back into another grand mal.

The benzos have different 1/2 lives, and wear off differently.

Xanax is the fastest acting, not meant for long term use for pain.
Ativan is moderately acting...
Valium is long acting.
Klonopin is the longest acting, and will have the least breakthrough. But it is the most addictive.
As people age, they cannot clear these drugs properly and so
warnings for the elderly are up for the whole Benzo family today.

All of them are discouraged today, because of the rapid habituation to them. Getting off these drugs is very painful and takes weeks to months.

I am going to add this drug family to our Medications post in the subforum, soon. But I have been too ill to do it until about now.
Maybe this week or next.

So they do give some relief in the beginning, and seem wonderful. That effect does change with time however.

MrsD, Thanks for the Info. Im sorry to hear you were not feeling well, Hope you are feeling better!

I have been taking xanax for over 20 yrs (gulp) for anxiety disorder. I know now it was a big mistake taking it for so long. I wish my doctor would have warned me back then. I am also on the same low dose all these years!. I feel I will be on it for the rest of my life. The withdrawal Ive read about scares me! Since I starting having neuropathy pain my anxiety has increased and I can not sleep. I didnt increase my dose (tho I am so tempted) I just startd taking my first morning dose earlier, 2:00am instead of 8:00am to help me sleep. It helps for now ,but as you said it has a short life. I do not want to start taking sleeping pills, I already refused Ambien.

My Doc/Psych wants to switch me from xanax to Klonopin so I could be on a longer lasting med. I am nervous about this switch because I feel I will get xanax withdrawal sypmtoms. The Doc says I shouldnt have any withdrawal because I will be switching from one Benzo to another, but this still scares me for I have been taking xanax for a long time. I do not have to worry about an "addiction or dependency" unfort for me this has already happened. What are your thoughts on this..Thanks....

I don't think you will have a problem switching to Klonopin.

But alot depends on the doses involved. If you are on the high end of Xanax, then the Klonopin dose may be too small, but there is
alot of wiggle room for adjustment, and people are different.

Your PN could be due to the Xanax... it is a hard thing to wrap your head around, but the pain comes back bigger and bigger, over time with these drugs.

[QUOTE=mrsD;966643]I don't think you will have a problem switching to Klonopin.

But alot depends on the doses involved. If you are on the high end of Xanax, then the Klonopin dose may be too small, but there is
alot of wiggle room for adjustment, and people are different.

Your PN could be due to the Xanax... it is a hard thing to wrap your head around, but the pain comes back bigger and bigger, over time with these drugs.

MrsD,
Do you mean the xanax could have actually caused my PN? I am only on .5 xanax 3 times day. Is there a Klonopin dose that could cover this amt? I find sometimes, when Im having a PN flare up , (I think) the xanax helps calm it dwn a tiny bit. Ive never noticed that the xanax causes "rebound" PN pain, but it deff causes "rebound anxiety.

So when the Xanax wears off you have more pain, and want another Xanax.... it is a very common trap.

There is alot about this on the net. I just haven't put it all together yet. But Cyclelops here ran into this problem. If you search members list for her recent posts, she goes into her
battle with Klonopin.

So yes, in the short run there is relief...but as time passes you enter into the cycle of more pain, needing more Benzo. It is rather inevitable IMO.

Mrs. D
Thanks for your input.
Can you give me any clue regarding when this kind of nerve pain attacks will ease off?
When people have neuropathy, I know it becomes and is cronic. It does not realy heal. But does it sort of go into some sort of remission??

My struggle has lasted for about 1 year now.Before that, I thought the numbness I felt was MS, due to the fact I had MS lesions on my brain MRI. But I believe they have ruled that out now, ( the pain was not so bad until a few months ago, now getting worse.)
Taking this medication for these symptoms is not good for long term, it is just symptom relief. I can not imagin me taking this Lyrica for very long. I feel very bad. And I can not imagin having these pain burning, vibrating and feeling like fine tremors inside. Regarding the Xanax, my PCP prescribed that to me some time ago, just after I had been off from my job a few weeks due to a small CVA. I have had a lot of issues, and it was making me a little anxious.

[QUOTE=Marie33;966580]Hi Marie33
I have had EMG some time ago, negative. I started to feel real sick with a lot of different symptoms later on. Now I have a lot of numbness. Numbness has increased over the last few months. Now I have numbness up to knees. Urinary problems has increased, due to neurogenic bladder. I have had MRA s of head, neck and brain to rule out systemic vasculitis, negative, thank God. I have had ct scan of lungs. Latest, I had bronchoscopy, it showed some bilateral bronchial stenosis. I have had cardiac work up. Now I am waiting and hoping this new neurologist can find the reason for my neuropathy. I am sceduled for EMG of , I think all 4 extremeties. We did discuss regarding a nerve biopsy. I want that biopsy, it might help in diagnosins. When the burning pain first started, the rheumatologist prescribed Neurontin, than she later changed it to Lyrica. Now that is not holding And this medicine do cause dizziness. And it is expensive.
I hope we all get better sooner than later.

Mrs.D
Thanks for the input and information.
Can you give any information on what is normal for people with neuropathy. Any idea regarding : I understand neuropathy is a cronic condition.
But does it ever ease off, like come into remission?
I can not immagin having to take this medication for long term. Lyrica is for symptom control only. I am so fully aware of that. This is what is scaring me. I also can not immagin not having any relief from this terrible condition.

Is ther flare ups and remission in this condition?
You see, I do not have pain under feet and only that, as in diabetics neuropathy. I have it ALL OVER.
And in addition to burning, I am trembling inside.
Regarding Xanax. PCP prescribed that due to anxiety due to all medical issues. The neuropathy pain kept mee up many nights.
But I have wondered if I should ask for something different. I am not actualy so anxious