Gabapentin - I want to pull my legs off

[Madmom02]

Neurologist prescribed 100mg gabapentin at night. After 3 nights of no relief he upped dose to 200mg. Night before last I took 200mg at 10:30p plus 1mg clonazepam at midnight because I was desperate. I slept for 7 hours. (!) I was off balance, and dopey all day plus eating non-stop. And, I had RLS all day.

Last night I took 200 mg of gabapentin at 10:45pm plus .5mg clonazepam. By 11:45 pm the RLS was calming but I had a bit of racing heart (I have a history of tachycardia brought on by nortriptyline which has resolved since I stopped taking that drug). My legs felt tingly and tight - like the RLS was trying to break out. And I'm sad and weepy. I took another .25 mg mg clonazepam and slept - until 3:15am when I was awaken by the worst RLS I've ever had.

I'm going to chop my legs off or smash them to smithereens with a hammer. Who can live like this?

I took another .5mg clonazepam AND a .5mg oxycodone at 3:20a - no effect. I'm going to end up as an accidental overdose statistic because I'm taking a combo of meds in the middle of the night/early am - two of which is not prescribed for RLS (the oxycodone and the clonazepam although the clonazepam was prescribed for the RLS for years by my neurologist. This time around it's from my psychiatrist for anxiety and sleep - the anxiety was his misdiagnosis of the tachycardia).

I'm feeling a bit at the end of my rope. Sorry if this make no sense. I'm rambling. It's now 4:27 am and the oxycodone and clonazepam are doing nothing. What would happen if I took another gabapentin?

[badnights]

You're in a nasty spot for sure, you poor thing!

Once the symptoms have hold of you, they require a lot more meds to calm them down than the amount of meds that would have prevented them in the first place. So, no wonder you had no relief from teh 3:20AM clonazepan and oxy.

Did you just stop the pramipexole completely? Whether a person was augmented or not, there is a withdrawal from dopamine agonists that consists of worsened symptoms (but it's much worse if you were augmented). I'm guessing here - did you just cold-turkey quit the pramipexole he had you on? You weren't on it long - since Sep 6 - but that;s definitelhy long enough to cause augmentation, and probablhy therefore long enough to trigger withdrawal symptoms.

Your gabapentin dose is very low, too low to be effective if you're in DA withdrawal. The clonazepam is not the best med for RLS/WED, especially not severe or withdrawal-induced WED. So you're simply not getting any effective medication. Presumably because the symptoms have been aggravated by DA withdrawal. You need stronger meds BUT only for a period of time - a few weeks at most. When the withdrawal is over, your symptoms will back down again to something reasonable, amd might then be controllable with that small amount of gaba and clonazepam

I also want to say that gabapentin causes deep depression, suicidal ideation, and even suicide, in a percentage of people who use it. Feeling weepy is something to keep an eye on. If it continues, especially if it seems to increase when you take the gabapentin at different times or varying doses from day to day, then you should probably stop the gabapentin. Take this one seriously!

[Madmom02]

Thank you for responding to my drug induced ramble. I did stop the pramipexole fast so maybe it's withdrawal. I can't imagine taking any more gabapentin as I did take another 100mg at 4:30 am. Slept until 8ish and I'm feeling completely in the mud. Sad, angry, irritated, and hopeless. And that last is scary because I've only ever felt hopeless once before in my life and that was almost the end.

I just don't know what to do.

[Madmom02]

So, just talked to the neuro doc on call. He said depression is a very rare side effect of gabapentin at this low dose and maybe I was depressed because of something else! I wish I'd screamed at him: "YEAH, NO REAL SLEEP In WEEKS!"

He said gabapentin has a very short life and to "just ride it out and take the clonazepam even though it's not very effective for RLS and very addicting." And this is after I told him I'd taking clonazepam for years for RLS and it stopped working so I stopped it. And the rx I now had for it was for anxiety and I did take it for the RLS/sleep and it wasn't much help plus it makes me weepy. His final piece of advice "Be sure and call Dr. Z on Monday morning."

What am I supposed to do until then?

I'm surrounding by a bunch of know-nothing doctors and they're going to kill me. Sign me up for a movement to educate doctors about RLS while they're in medical school.

[Polar Bear]

Such a horrible weekend for you until you can get to speak with your doctor on Monday.
I also take clonazepam 100mg as a sleep aid. I thought it would be the answer after trying zolpidem and zopiclone without much success. The clonazepam hasn't been much better.
I recently went to my doc with a sore shoulder which he says is coming from cervical damage at my neck, the nerve runs down into the shoulder. For this he prescribed Gabapentin to deal with the nerve pain. My own thoughts were..... hmmmm this is something that could help my sleep and RLS symptoms. Doc prescribed 100mg x 3 times daily (for the nerve pain) but my neck and shoulder is now much better though not fully clear and I'm not using it for the shoulder nerve pain.

Bearing in mind that there is the percentage who react with depression/suicide thoughts I am very wary about taking the Gabapentin x 3 daily, even though this is such a low dose. But, I did what you did.... Took my clonazepam and 1 Gabapentin 100mg at bedtime. Not being sure how much that helped, the next night I added 200mg Gabapentin. There didn't seem to be much difference between the two nights. So the third night I went back to clonazepam plus 1 Gabapentin 100mg. My sleep has settled a little. I get to sleep for 2 or 3 hours, get up for an hour or so, then back to sleep for sometimes as much as 4 hours. Also, don't take the Gaba every night.

I am taking very seriously the comments regarding Gaba and depression.

Have you tried cold water/hot water - just to help you over the weekend.
Into the shower and take a deep breath, let the cold water run on your body, not so bad once you get over the initial shock, cold water helps me though it takes about 15 minutes. Then once calmed, into bed as quickly as possible.
Others prefer hot water.

Please do keep an eye on your mood.

[badnights]

Your dcotor's response implies that since the side effect of suicidal depression from gabapentin is rare, that can't be what you're experiencing. Well, it's rare, not impossible, therefore there is a chance the gabapentin is affecting your mood. It seems he's taking account of the low dose which he thinks reduces the chances that the gabapentin will cause depression, but I don't know anything about dose dependence of the effect. I just know it was a very unsafe unhealthy dangerous medication for me to be on, and shortly after I got off it, the labelling was changed to include a warning that it might cause suicide. As it nearly did for me. I wouldn't mess around with it.

You now have to buckle down and make it through til monday come hell or high water. No matter what. If you feel the gabapentin is not helping your RLS/WED, you could try stopping it - - but stopping it suddenly can cause issues, for some people even when stopping from low doses. So you might be gambling depression from the gabapentin against the potential for withdrawal-related anxiety, depression, fatigue, insomnia, nausea.

What makes you say it's the clonazepam that's making you weepy? Have you had that effect from clonazepam before? How do you know it is not an effect of the gabapentin?

I advise you to write down 4 or 5 statements that you need to communicate to the doctor on Monday, because by Monday your brain might be fried, so to speak. For example, what you wish you had said to the neuro on call. What is the end result you want from your call to the doctor on Monday? Have that clear in your head, and be sure you communicate it to him.

[ViewsAskew]

Don't even know where to begin. I'll start with a virtual hug, my dear - you need it! Stopping pramipexole and playing with these new drugs is misery incarnate.

Will you make us a promise? If you feel as if things are too nasty, sad, etc. and you wish it were all over that you will contact one of us (or all of us) or any member you know through a PM until you can get one of us to chat with. If we're not here, do you have anyone you can contact at home or around you? I would miss you if you weren't here anymore, so I expect to see you each day until your appointment!

Since you just stopped pramipexole, it's almost impossible to expect that a small dose of gabapentin or anything else will get you through. So, I'd suggest one of two things. Either go with nothing and know that you WILL NOT sleep for awhile and will be miserable. You will not have side effects, though. OR, option 2, see if you can convince your doctors (using Buchfuhrer's info) that you need enough and a strong enough opioid for just ten to twenty days to get through this, THEN you can try gabapentin, etc.

And, last, more hugs .

[Rustsmith]

One thing to keep in mind is that because you have MS, your RLS is quite possibly secondary RLS whereas most of us have primary RLS. The combination of MS and RLS could alter the way that react to any of the meds that you are taking when compared to most of us. I keep thinking back to a statement that my wife's neuro made to her years ago upon seeing her MRI for the first time. They doctor said "considering all of the damage that your MS had done to your brain, it is amazing that you are alive, much less able to walk, talk and carry on with the semblance of a "normal" life." The doctor then said that she was a testament to the brain's "plasticity", which simply meant that the brain is able to rewire itself from certain types of damage.

Therefore, if your MS has caused damage in certain key areas of the brain, your reaction to drugs could very well be much different from the "normal" reactions and absolutely NO neurologist on this planet is going to be able to predict the absence or severity of the side effects that you will experience. I have been taking 900mg of gabapentin at bedtine for years with no side effects beyond sleepiness (which is part of the purpose of taking it). My wife started on the same increasing doses of gabapentin at about the same time that you did with about the same effects other than the appetite part. So, please just keep in mind that your combination of MS and RLS means that you have to be even more careful with all of these changes that you are making. Your reactions are going to be different from even what the MS and/or RLS experts might expect.

To paraphrase the quote from the George Orwell book Animal Farm, "All animals are equal, but some animals are more equal than others", in your case we all react differently and you can expect to be more different than the rest of us.

[jul2873]

I started on Gabapentin about a month ago, right after the DEA announced it was going to ban kratom. Up to then, kratom had been my mainstay treatment. I followed the doctor's orders: a week of 100 mg, then a week of 200 mg. then a week of 300 mg. and then another appointment with her. The second night after I got to 300 mg I woke up in the middle of the night with a blinding headache. And I noticed that, during my first week on 200 mg. I was frequently getting breathless. Since I have asthma, that is always a worry. At any rate, with the headache and breathlessness, and absolutely no help at all with the RLS (I was still taking kratom for it) I decided to taper off. It did not look like it was the drug for me. I went down to 200 mg. the 3rd night after I started the 300 mg. No problem. Then 3 nights later I went down to 100 mg. Oh my heavens! I got crippling pain in my shoulder and knee (the same pain I got in my shoulder from Cipro) and the breathlessness was worse. Ok. I stayed on 100 mg. for a week and the pains gradually abated. Another week went by, and, since I was afraid to go suddenly off of 100 mg. I pulled open the capsule, and shook about half of the medication into a little glass, and drank it with water. My plan is to do that until I see my doctor again on Tuesday. But it's clear to me that gabapentin is not the RLS drug for me. And the breathlessness is still sticking with me. I am hoping I don't have to go on heavy duty asthma drugs again.

It's not a drug I'll take again.

[ViewsAskew]

Yikes - not a good experience! No wonder some of us are so hesitant to try some of these drugs.

[Madmom02]

Your reaction to drugs could very well be much different from the "normal" reactions and absolutely NO neurologist on this planet is going to be able to predict the absence or severity of the side effects that you will experience.

This is true, Steve. I took 1,200 mg + of Neurontin (before the generic gabapentin) from 1995-2001. I took it regularly before bed and as needed before flying or going to a movie.

That was 16 years ago and the MS has changed dramatically. And, I've had two failed re-trials of gabapentin.

Your comment reminded me that this doctor, a former psychiatrist, and a former primary care doctor commented on my unusual medication reactions. I won't forget again!

The RLS is primary because my Dad had PLMD and three of my four siblings have RLS. Perhaps the MS makes it more severe?

The stats for depression in low dose gabapentin must be very low - I can't find any studies that are really on point but I found a study about low dose gabapentin causing pitting edema in one person. I'm adding that study to my dox stack (if anyone wants it, let me know and I'll post it).

I might throw the lot at him along with the part of my medical record that I found that includes a note from my back doctor about gabapentin caused pitting edema and depression in me at 300mg night.

Last night I was up all night. Didn't even bother to try to sleep (thank you, Ann, for your wise counsel on this ). I was miserable and I walked myself into exhaustion (and the walls but that's why we have them - my personal bumper course!)

At 9:30am, I took 1.5mg clonazepam and 10mg oxycodone and passed out. The RLS wake me up at 1:30p. I took another .5mg clonazepam and fell back asleep until 4:30 (RLS alarm clock again). I'm feeling much better about it all - I think the oxycodone helps defeat the clonazepam weepy.

I see the neurologist on Wednesday and I'm bringing the algorithm. I'm not going to ask for an opioid but I am going to walk him through every drug on the list and remind him why they are not the answer for me.

Sending hugs and special thank you's to the knowledgeable and compassionate Board Moderator from the Northwest Territories, N. Ireland, Chicago, and my much missed home state! You literally saved my life this weekend. Thank you.

[ViewsAskew]

Fingers crossed for the visit. It's always such a crapshoot.

I'll add more wise counsel (it's limited in a lot of areas, but with RLS it's a bit deeper - wish it wasn't!)...

Which is to keep your expectations low.

Not saying it won't work out - it could and might. But having been in your shoes more times than I want to remember, the absolute worst is to feel very hopeful and to have it all be dashed. It can put anyone into an incredible emotional tailspin. As Beth suggested, identify the most important issues and what outcomes you want and focus on what you can do to facilitate (sounds like you already have). Think ahead to what you will do if this is a horrible appt and doesn't help at all or if it is OK, but not quite enough. Then you'll have a plan to focus on immediately just in case it wasn't what you needed - otherwise you might spend much too much time going over it again and again.

Per the MS - I have seen stats about how more frequently those with MS have RLS compared to other diseases. My guess would be that it just makes it worse, then, when it's primary along with the MS.

[badnights]

I'm so glad to hear from you today!

A little sleep will do wonders, I'm glad you got some.

Didn't even bother to try to sleep (thank you, Ann, for your wise counsel on this ). I was miserable and I walked myself into exhaustion (and the walls but that's why we have them - my personal bumper course!)

Absolutely the best way to cope when things are this bad. Put the rest of your life on hold.

I see the neurologist on Wednesday and I'm bringing the algorithm. I'm not going to ask for an opioid but I am going to walk him through every drug on the list and remind him why they are not the answer for me.

There is nothing more you could possibly do., other than have a backup plan as Ann suggested. I can't think of any way I would try to improve on your plan A. Here's hoping the neuro is a reasonable open-minded person, and no need to implement the backup plan!

[Madmom02]

Thanks for bringing me back to reality. This is not the neurologist to show the algorithm to or to try to educate. I'm going in with very low expectations despite my blustering - this is not a new neurologist and he's not open-minded.

Maybe he'll be frustrated with me or for me and that will work in my favor. It's really an appointment for a follow-up on the MS but since he can't change/fix/offer me anything for that...

I'm in a bad mood this am. Sorry, too much clonazepam - I'm fighting off tears.

I suspect he'll send me back to psychiatry, which I'd decided I was doing anyway. If I leave knowing I've conveyed to him how truly terrible the RLS has been and the RLS Foundation could help him broaden his knowledge, I'll be satisfied.

[ViewsAskew]

Sometimes the best you can hope for is that nothing changed for you, but maybe you made an impression on them.

So sorry, though, that this isn't likely to have a great outcome. It just is so frustrating when you know more than they do and they won't listen to anything to expand their view.

Hope you feel better - and very soon. I hate it when I am weepy!!!!!