erve pain causing rlsa

[mich711]

I hope others can somehow benefit from the realization that their rls mayb very well, is caused, by nerve damage. I have some to that conclusion regarding my rls and chronic and severe insomnia, the latter which I have had for over 5 years now. I am 34 years old, and never had rls until several years ago. My first sensations occured while I was on a benzo (benzodiazepine) -Ativan. Although it initially helped my sleep, it eventually pulled me out of sleep as its effects wore off (I build up a tolerance -which is normal on benzos). My sleep deprivation amounted to insane levels (down to 20 minutes a night)....needless to say, I went out of my mind. After eventually going on different meds and ending up in the ER, and after being placed on several other meds, I finally ending up realizing that the only med that worked was a benzo (eventually got on Klonopin). I have since tried to get off this last med, but after 10 days of excruiating withdrawal, the worst being almost complete absence of sleep or severe leg pain (I rarely had leg pain), I realized I had to go back on Klonopin. Some sleep was much better than no sleep at all. Now after several days of being back on this med, I have difference sensations in my leg (like a snake crawling up my outside left knee, and tingling in my toes and feet and lower legs (which I have had since the first time on a benzo). Originally my sleep disruption started with attending to my newborn baby, and then stress, but then after turning originally to over-the-counter sleep meds, then to Ambien, then to other meds, and then (overlapping) with a benzo, and now just on a benzo, I realize this is caused permanent damage to my nerves. After all, benzo (And other sleep meds) difrectly affect your nervous system. For many, they will be fine after finally getting off (good luck in getting off...benzos are one of the most addictive substance known to man), but for others like myself, there is permanent nerve damage. The shaking and nerve sensations will never stop. I am damaged for life. Hope others can benefit somehow from my story. Sorry if this is confusing....hard to some up 5 years of hell into a paragraph.

[Sadiegirl]

Mich,

How long were you on the klonapin before you tried to get off? and what was/is your dose? I have been taking klonapin for 3 weeks or so but would like to get off and I am interested in your withdrawl experience. Did you come off cold turkey? did you reduce your dose and then try to go off? How did you do it? Was your physician involved in your coming off it? I am sorry for your nerve damage and I believe your sharing your experience will help others including me.

Thanks
Laura

[ViewsAskew]

Laura, I had nightmarish experience with K, but not like mich! I can tell you what I learned about withdrawal, hopefully this will help.

If you have been taking a benzo for a month or less, you can probably stop quickly without problems. To ensure you don't, talk to your doctor just in case. Few people have trouble stopping cold when they have only been on them for a short time.

If you take it for more than a month, but less than 6 months, most people can get off by tapering pretty fast. Cut the amount every 4-7 days by a specific amount. The doctors usually tell you to taper by a relatively large amount, like .25 mg. For some people, this works fine. But for others, they have to taper more slowly. I had to cut my dose by 1/10th of the total dose every week to avoid severe withdrawal symptoms. Since K has such a long half-life, it will be at least 2-3 and up to 5 days before you really know what the effect is of dropping a dose.

The longer you are on it, the harder to get off. I really feel for mich. I joined a benzo board when I had difficulty getting off. I knew I couldn't do it alone, and my doctor seemed to think it was an easy thing. Many doctors don't realize that a significant number of people have a lot of difficulty stopping these drugs. On the benzo board, some people took 2 years to completely stop the benzos they were taking. I saw many people in similar situations to mich's and it scared me to death.

Ann

[mich711]

dear laura-

re: Klonopin...my highest dose was 2 mg and used only at night. I never took it during the day. I used it solely for sleep. GOing on this most addictive drug was the biggest mistake, and now it seems sure that I will be on it the rest of my life. It has completely robbed me of my sleep.

I tapered it very slowly, and I still had bad withdrawal symptoms. But, when I was on Ativan (1.5 years ago) -another benzo - I had worse withdrawals, possibly becuase it was a shortly acting bezon, and also because I followed most doctors' idiotic advice....to taper it by .25mg every two weeks. They can easily say that because they don't suffer from the agony of withdrawal. That is way too fast. Getting back to my discussion on klonopin, I tapered it every two to three weeks down by one sixteenth...like half of a half of a quarter. When lowering, my worst withdrawals were sleep deprivation (insomnia) -to a great degree, but when I finally got off it altogether, I got regular withdrawals. Look at this website to get the truth about the hell of withdrawal...www.benzo.org.uk/kws.htm. I felt nauseous in my bad, legs, arms (didn't know that was possible), tingling and weird sensations under skin of arms, back pains, nerve pain across back and arms, terrible aches in back of leg like the skin and muscles were being pulled, slight headache, extreme weakness, difficulty walking, great fatigue, diffulty sitting still......and nerves were shaking deep inside my body...like they were rattling. Being unable to sleep was sheer hell. I wanted to get off of this stuff because it helped my sleep only at the beggining, but then effects wore off. Oh, and the med left me (to this day) with impaired memory, diminished mental capabilities, and feeling very uncomfortable. I feel terribly nervous on the inside, but I am slow and tired on the outside. Biggest mistake was turning to ANY meds for help me sleep. THis had ruined my life. Please, hope someone else can spare their life and stay away from benxos.......worse substance on this earth. Known to be harder to get off of that HEROIN!!
Monitoring by doctor??????HE told me to come back in three months. Call that monitoring? I have been alone in this. Drugs ruined my life.

[Sadiegirl]

Ann & Mich thank you for posting your experiences with K. After 1 week of taking .5mg of K, I stopped taking it for two nights. I was having heightened anxiety and sleeplessness on the 2nd night, so I went back to the K. It took another week to get my anxiety back down. So, I have a feeling I am going to have some trouble getting off. I too only take it at night. I am also 3 weeks into lexapro for anxiety. (I was told it would take 4 weeks to be fully affective). I think I am going to try to get off the K again. I might try to half my .5 mg for a week or so and then go to every other night etc. I will have to see what I can tolerate. How did you handle such small decreases in your K. Does it come in smaller doses ie .25 mg tabs etc?

Laura

[ViewsAskew]

It does come in wafers that can be cut up more easily, but my doctor wrote out the script wrong, and I didn't want to deal with it. You can also have your pharmacist make a suspension liquid of it (I didn't try that) and the administer is by cc's, or you can start cutting them into little, itty, bitty pieces. This worked for me. I use a pill cutter to cut them in quarters, then used toenail clippers to cut off a tiny amount. I increased the tiny amount I cut off each week. When I was done, I had a jar full of "tiny amounts", lol! But it worked and I got through it.

If it were me, I'd do it sooner than later. With benzos, the longer you wait, the worse it is. I had no idea that it would take me several months to stop a relatively low dose that I had only taken for a few months.

Ann

[Sadiegirl]

Thanks Ann. I didn't realize when my doctor put me on this med it was so addictive. I plan to do a little better research with any other drug I might be given in the future. This board has been a great place to learn from others. I appreciate all who have gone before me. Your experiences are priceless.

Laura

[ViewsAskew]

Yeah, me neither. About 50% of people have no problems stopping it. The rest of us have from minor to major problems. The docs don't really acknowledge this. Because of the war on drugs, we have to go through all kinds of ^$%# to get opioids, but boy, we sure can get benzos!

At one point, I had temazepam, clonazeapam, and diazepam, all from the same doctor, for me to decide which I liked better. Yeesh! Good thing I'm not someone who is prone to addiction. But the same doctor wouldn't give me a trial script of Ultram, let alone an opioid to see if that would help when none of the benzos did and I was out of options on the DAs.

We wish we hadn't gone before you, but by golly, I'm determined that I'll help at least a few people by being here. and am very glad that you are reading up to protect yourself. I really do not want anyone to have to go through what I, Lyn, Becat, and many, many others did before we got reasonable help. Anyone that can handle all the reading and is willing to put in the time can find more info on this site than anywhere else, and shouldn't have to go through what many of us did. We're happy to help.

Ann