Sorry, I forget that there's not always an option to change in Canada. Aside from that, the Canadian system is far superior!
Hey, Corina - the keppra is for my leg clonus and the myoclonus. I also take Baclofen (but I'm titrating down) and Zanaflex, which is a great 'as-needed' drug.
Jensequitur: I didn't realize that Keppra was like gabapentin. Why do you take that one, if I might ask? I'm too tired to think straight - could you remind me of the three drugs you take and which is for what? I'd like to learn a bit before I go back to the doctor (GP).
Candy: hahaha you're right about Canada! And even worse, I live in Saskatchewan where no one wants to be. I just heard that there was a great neuro-opthomologist that I should see, but he just moved to Victoria!
Thanks for the comments and advice,
Corina
Corrina, No my neuro did not give me a reason....and since I have been home, I have spoken with other MS clinics, and nurses, and UBC relapse clinic, and they say "DO NOT STOP ABRUPTY" .............. so, that is what I am not doing. I have stopped reducing, and started adding back in because the symptons were coming back too.
I felt, that I was doing better on the 2700 mg.'s too, so, that is what I am going back to that.
I am so with you on your comment on your Dr's not being for us, they seem to be against us..!!! You have to do research before you go, and write things down, and approach them with the information in a calm and direct manner. ( that is what I try to do) ..LOL ... sometimes successful, and sometimes not.
Anyways, we are Canadian, and we don't seem to have the liberty of just pulling the neuro's up on what they don't do, and we have to be our own Dr's. We don't have the chance to just change Jenn, thought it would be nice.
In Canada, the Neuro's are few and far between, and after you go from one to the other, there is no "OTHER" to go to after that.
So, don't burn your bridges, and go with your information, that is our best ammunition for our situation.
Good Luck, and let us know how it goes.
((hugs))
Candy
That internal shaking sounds like a tremor problem. I don't know what would be causing it, but I know there's medications for spasms.
Now the clonus of the legs could be withdrawal from the gabapentin. I know it helps to calm nerve impulses. The gabapentin probably did not cause the myoclonus. I take Keppra for leg clonus and myoclonus in my spine, which is a similar drug.
The burning sensations are why you're taking the gabapentin - I still think it's ridiculous that you're being taken off of it. Some of that pain sounds like muscle pain - are you taking any sort of muscle relaxer?
As you say, if you can't trust your doctor, then what the heck? My rule is if you know more than your neuro, then you need a better neuro. That's my recommendation. Obviously this current one isn't treating your reported symptoms, which is his job. If he can't do it, you need to find one that can. I know it's really difficult, especially when you're feeling so bad. It's ironic that the worse your disease is, the more difficult it is get good treatment.
Just wanted to post an update on my gabapentin adventure. It might be long but I thought it would be good to record in case anyone else was in my situation.
I took twopack's advice and added back one pill (100 mg). I also made a mistake with my own dosing. I usually take 2700 mg per day, but about a third of the time I forget my afternoon dose – like on the Friday I started withdrawing. So that day I took 6 pills instead of 9. So I subtracted 1 from the 6 and instead of 1 from 9 and then went down every two days by 1. So it should have took me about 18 days to withdraw (which is still much slower than my pharmacist suggested).
After my post I added 1 pill back in, so now I'm going to take about 14 days in total to withdraw. But it hasn't helped with symptoms. I called the drugline here in Saskatchewan and the pharmacist I talked to thought neither drug caused the problem, thinks maybe its my old symptoms coming back through.
So here are my current symptoms:
internal shaking especially on left side. Can only see it when doing small movements like putting toothpaste on toothbrush. Other's can feel it though it they put their hand on my shoulder, apparently it feels like a strong vibration like the muscles are going like crazy.
Major increase in pain – left arm and leg ache, sometimes it gets so bad I can't think of anything else until it's massaged. Then it will come back.
Lots of burning in left foot and leg.
Very weak muscles especially left side. Exhausted and sore after taking coat off.
More leg jerking than usual and more intense.
LESS muscle spasms (or myoclonus of my spine – not sure) in my upper body.
Very cranky (I think my family would use different terminology) like PMS.
Less tired
I missed a couple of things when this started. One was the mess-up with the withdraw schedule and the other was one the doctor and the pharmacist should have thought of. Never make more than one change at once! For the very reason that you can't tell what's causing what!
So is this withdrawal? Or was the gabapentin actually masking all that pain and shaking? I thought it was just for the nerve pain. I thought the other things had actually gotten better.
And did it actually CAUSE the upper body trunk spasms/myoclonus?
Why do we have to do all the thinking? Wouldn't it be nice to be able to just trust the doctor knows best?
Corina
I wonder what they have against it....
and what are the alternatives. I have problems with all the ssri anti depressants.
Candy, did your neuro give a reason for stopping?
Corina
Corina,
this is to weird, but my neuro is doing the same thing to me.
I was told to go COLD TURKEY just last week. I was also told to GO OFF my Copaxone, that I have only been on for 2 months also, I don't do well on the amitriptyline either, tried it years ago for migraines , but I did not respond well on it.
I have decided myself to reduce my Gabapentin, 300mg. per ever 3 days, that is about how we got on the drug, so we will see how it works, It will be a month or so before I can get it down to 2100, that is where I would like to be ... but, we will see ...
Please don't do the abrupt thing, it isn't a good thing, and I don't want to think of you being not well because of it.
Keep in touch, and you can message me if you want, we are going through the same thing right now.
take care,
Candy
Sure thing. I'll be happiest if it helps you get pain control in the end. We're all here to help and encourage each other in our journeys.
I take gabapentin myself (but only a total of 800mg a day) so found lots of that information very interesting myself. I had forgotten about the "principle of diminishing return". That is VERY interesting. I had been thinking I might need to start taking a third dose of gabapentin each day to help control a recent increase in my pain. Still might do it but I'll be more careful now to make sure the total daily dose doesn't escalate too much unless the relief I get is improving proportionately.
I really hope other people who take gabapentin (and similar drugs) will stop in here to read this and research those links.
Good luck to you Corina.
Mary
Wow! Thanks for all that information. That's great.
My stupid neuro didn't even suggest a taper, so I asked the pharmacist. It was her idea on how fast. And neither one of them mentioned a single withdrawl symptom!
I'm going to take your advise and slow the taper down. I tried to get to my doctor (GP) for some advice but he's booked.
Thanks again for your thoughtful reply.
Corina
By the way, I suspect your skaking is a result of the rapid decrease in your dose. It takes about two days for your higher dose to leave your body. Now is when your body would be expected to start complaining. If you feel comfortable with this....
return to a higher dose again today...
see if the shaking stops.....
(if it does)
resume the taper in a day or two......
at a slower pace.
But PLEASE find a doctor who can help you do this safely and will order properly dosed tablets along the way.
Mary
Decreasing your dose by 66% in 3 days seems very fast to me. This drug is introduced slowly and usually needs to be withdrawn slowly as well. Individuals react and respond to drugs in individual ways. Some people might be able to 'cold turkey' off a drug without problems while others need weeks (maybe even months) of a taper to comfortably stop the same drug.
As you notice any new or increasing symptom you think might be related to the decreased gabapentin dose - RETREAT one step in your schedule. Did your doc think to suggest a schedule of safe gabapentin withdrawal?
I think you should be decreasing your dose no faster than about 300mg (total) every few days. I looked this up online to be sure. Here's a link with lots of information. (Just don't be put off by the site name!)
http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Neurontin?from=Neurontin.Neurontin
Here's another link to a discussion some real people had about their own experiences decreasing and/or stopping gabapentin.
http://prescriptiondrug-info.com/Discuss/Sudden-Withdrawal-from-Neurontin-173854_s2.htm
NOTE: Gabapentin withdrawal can be similar to benzo withdraw. In other words, this is tough for some people! If this doc is helping you do what he wants you to do, get another one FAST!!!
God luck and let us know how it goes. This is good education for us all.
Mary