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    I'm back.. Question about Ataxia
    missist posted:
    Hi, been MIA a while, I'm back. My pc has been broken all week or so.

    I'm wondering about ataxia-- Some of my family think I am over medicated because I stumble and am clumsy--especially in the morning and sometimes evening if I've been sitting.

    I sometimes (often) use a cane when I first get up and again in the evening when I've been sitting in my recliner a while.

    I looked at the meds I take and gabapentin seems to be the only one that even lists that. I was somewhat clumsy before I started taking it--although it has gotten worse the past year and so --maybe it has a part in it?

    Anyhow I only take 600 daily-- 300 twice. I have read that a normal dose is 1800 in 3 parts.

    So--question--is clumsyness, dropping things, stumbling in morning and evening-- a fibro thing? Lack of balance?

    Do any of those who use gabapentin have that issue?

    booch007 responded:
    Morning Mary,

    Welcome back....I thought of Gabapentin as an additive to this right away and then when you said it. Ah ha.

    The thing with Gabapentin as stated, that 1800mg is the standard dose......that dose is for use in certain things. I could only take 100mg and the loopy head I had and eye hand coordination was way off. I chose to stop using it.

    They say over time you settle in with side effects though. It is good you use a cane and protect yourself. I also have walking issues if I have been , like at a restaurant and have been sitting a long time. To get the legs going and moving forward is an issue. Then they unlock and open up to walk more normal.

    I still drop things as my main issue is neck, that gives headaches and hands/arms as most problematic. I changed my dishes over to Corelle as they don't break if I drop them and they are so much lighter.

    Good luck with figuring this out. We tend to be our own detectives to get an answer. Is it about 45 minutes after gabapentin that you have the worst time? Is it from dormency of the muscles from sleep and sitting that gets you? Are you hydrated enough?

    I used to journal myself in the begining to figure out what I was doing or what affected my symptoms. That may help too.

    Good luck, Nancy B
    franr responded:
    Hi Mary

    Good to see you here.You always have interesting posts.The stumbling may be a side effect of neurotin .It never affected me but everyone is different. But the safe thing to do is see your primary he may want to have you evaluated by a neurologist. But do not delay.We cannot have you falling which causes more injuries .So stay safe . Keep us update. Fran
    missist replied to franr's response:
    Hi Nancy B and Fran.. I'm not 100 % sure anymore I think the dropping things part definitely is before I used gabapentin and I have always believed it is from my neck although I've been told it is carpal tunnel--I just really disagree. LOL.. funny but I think we know our bodies. and I think I have both issues.

    The stumbling in evening I think is from sitting--though I do take gabapentin these days around 5 or 6 pm--I used to take it later and still had the problem in evening. I have it also early in the morning when I just get out of bed--so before I take meds.

    So I'm not sure--I guess it could just darn well be my 'normal' but gabapentin is the only RX i think could possibly have to do with it--though I"m sure it is not causing the hand issues. So--maybe this is just my body and maybe gabapentin has increased it ?

    I'm going to mention to my neuro when I see her but I don't want more tests as this has been a while going on--and I"m sick of wasting $ and time on tests.

    Very sick of..

    I think I can live with it--the cane is just so I don't fall. If I slow down I maybe don't need it. I am very careful how I grab dishes LOL--I got fiesta ware for Christmas a couple yrs ago--but I also have some little plastic dishes I use in am more.

    drop a lot of silverware too.

    I think--my family is dead wrong about me being over medicated--i understand what they are saying--but my doses on most of what I take are low and none of them really work the same way in body-- which people who don't take any meds prob. don't understand--not everything you take causes that kind of stuff. Celebrex is one that my mil asked about saying 'isn't that bad?' no understanding whatsoever about what the actual bad issues could be with it. Its not causing me to stumble or making me slow. sigh..

    I guess they care--so I should not get offended--its just I feel that nobody really 'gets' that I take meds for a REAL REASON!


    Well what can you do? Nancy-- yes! see the Neck can cause problems like that!! why don't my docs get that?

    life goes on eh?
    missist replied to missist's response:
    anyhow i think I will cut the gabapentin and see if it helps anything.
    missist replied to missist's response:
    I guess I'll drop it not just cut it back--at least a while. I remember doing this before but I wasn't paying attention to coordination/balance issues--just pain--I did notice my pain level went up. so its worth taking a look to see if it causes me to be less tired or less clumsy.
    We shall see...

    dollbug replied to missist's response:
    Hello Mary.....I wondered why you did not post like you use to. I guess I just thought that you had gotten busy. I am glad though that it was just a computer issue. I think we all depend too much on these machines....(but don't we all just love them?) you already know I do not take prescriptions. I did try Gabapentin for a while. But it affected my eyes really bad and I don't think I got it all back when I stopped. But anyway I wanted to tell you that I, too, have balance issues. When I go shopping I park close to the cart stalls so that I can grab one to get into the store. I try to be careful but I still have issues. I will say this though that when I had so many problems with my hands, I dropped a lot more than I do now. I know that I had no strength in my hands at all though. I use to be able to do anything. Now I have problems doing a lot of things.

    So perhaps it is a combination of both....FM and the meds. I truly do not think you are over medicated though. I am sure your family is just concerned. I think we all know that NO ONE really understands this mean and ugly illness and just what we must face each and every day with it. It is a shame too that even doctors have problems with knowing how to treat us. I sure do miss Dr. P. I am sure he could provide some useful info about this issue.

    There are times when I think I will fall just walking. So try to be careful and hopefully this will indeed get better for you. I don't use a cane but I am sure those days are not far down the road. I will, no doubt, put it off as long as I can and then I will give into using one. I have used one before around the house and I have issues with it getting in my way. So I sure don't want the cane to be something that I will stumble over. I have already broken both wrists. I don't want to break anything else, that is for sure. I think one of my falls I fell over my own foot. The other one I slipped on the grass as I bent down to pick up the paper. I now stay off the grass and I actually stay inside when it rains. I am not going to take a chance until I have to.

    I hope you can find some reason and then be able to fix it.

    Take care. Glad you are back.


    missist replied to dollbug's response:
    Hi Mimi--thanks. I was just thinking back and realized I was wobbly before I got the gabapentin--but thanks for mentioning the eyes--mine are not so good either. LOL> why not?

    Well I guess its always somehting. I think my issues are my issues, maybe the rx's have this or that side effect that is a problem--but there's a reason I take them.

    Still I used to get by w/o them and I'm still inspired by your success with that. I do wonder though if you might not want to get a cane--I don't use mine much--but I don't fall with it--and I know you've been hurt from falls.

    I've been reading more and more about herbs and wondering if I can find something that works for pain-- I'm now thinking maybe something that works on nerves would help. dunno.

    Well enjoy your day--lovely down here in SC, hope it is up tehre too.
    missist replied to missist's response:
    Now.. since I've made that conclusion--if anyone on our group here can remember.. next time I get to wondering--remind me.
    LOL, cuz I'm sure I will.
    Anon_10089 replied to missist's response:

    It seems like a lot of people here have mentioned balance issues that are not explained by anything specific. I know I drop things sometimes for no reason I can comprehend--I don't have numbness even. It might be another one of the quirks that comes with FM.

    Respectfully, it sounds like your loved ones might be a little under educated about the meds you are on. Perhaps they are linking them to opiates or something. Opiates have been in the news a lot lately and there have been many ignorant reports about them and people that take them. I follow these because I take opiates--small doses--and find great relief. But anyway, maybe your loved ones are making a connection and they are worried? I don't know, just a theory. Also, aren't you taking a new med for your seizures? Could that be causing some issues too?

    A little red flag went off for me, though, with connection to the fact that you have seizures. Although I think you're not taking the gabapentin for the seizures, is it helping those too? Also, would you be at a higher risk for having more seizures as a withdrawal side effect if you go off the gabapentin? I am not a medical professional, so these are just personal concerns!

    On the other side of the coin, it is a good thing that your family is watching out for you. A lot of the meds out there for FM can cause some pretty scary side effects so it's a good reminder for all of us to have someone watching us!

    I hope you find some things that work for you!

    missist replied to Anon_10089's response:
    Hi JR-- so far-- it seems explaining meds to my family is not helpful as they simply don't want to know, there are people with strong opinions who 'know what they know' and have already made up their minds what to think--and that is pretty par for the course. So it goes.

    Anyhow tummy is flaring so I didn't take Celebrex or gabapentin last night-- or this morning--I don't think gabapentin would hurt but that was my course plan yesterday.

    almost no sleep last night grand kids coming this morning and I'm wishing I could just relax, but not today. I will probably cancel my fun with a friend tomorrow to breathe and get myself back together and resched for next week.

    Fibro life.
    booch007 responded:
    hey Mary,

    Just reading the posts.

    Our family's never GET IT. We have a silent issue that no one can see. Alot of us brave the isues too and then it makes it worse, each good day makes the bad days confusing.

    Hell, WE don't get this disease......

    I just wanted to say, as I am in trouble this morning. It is that our bodies made up of muscles all connected to eachother and I swear they all talk....." well if you are spastic today...I am increasing my tension too!" Oh yeah...then I am presssing on this nerve bed to make her numb....oh yeah..I will get a headahe from this pressure on this nerve.....

    And then I take my meds and shut them up...

    The neck is the central point for so much. The shoulder girdle is holding the arms at bay and keeping them stable. It is complex and intricate. I hate it.

    But I am aware of the ones that create what symptom and the Travelle and Simons medical book and Dr Starlanyl's books helped to get pictures to say...."THIS and THIS to the neurologist.

    If I arrive with my book, she knows I am in touble.

    Good luck and I hope you feel better soon. . Nancy B
    missist replied to booch007's response:
    Ugh.. Nancy! well.. you're my tough gal hero-and if you are in trouble... where am I?

    I had a day today.. I went walking in local state park with hubby and about 3/3 of the way I knew I was too far.

    but kept on.

    Said to hubby I think I need to do this more often or i won't be able to.. he said-- a little more exercise and you'll be good--and I knew that is not true.. I mean I'm thinking--keep from going down futher not get better.

    I'm not getting better I know that.

    Problem is.. family and doctors don't know that.

    I hope you have a better week.
    mnjeepguy responded:
    Hi Mary, I take Gabapentin 300mg 3x a day and work with heavy machinery. I also take Plaquenil. They can both cause dizziness so I am not sure witch one it is. I have had a few moments here and there, it does affect me some. I drop things more than I used to and have If you suspect your med do not just stop taking it without talking to your doc.

    I find it useful to look up meds here and read the reviews. It gives me more valuable info than I get on the printed attached to my meds.

    A journal is a great tool as well. I try to write in it every day. It has been very helpful for me.

    I hope you can figure it all out soon. Take care.

    missist replied to mnjeepguy's response:
    Thanks Cory.. Question though--have you ever injured your neck? or do you have arthritis there--if you mentioned it before, sorry I forgot. (so many of us here) I just wonder cuz I am so sure my dropping things is caused by my neck and have had differing opinions on it by drs. One said neck,one said wrists. ( I think maybe both but def. neck first) Do you think the meds make you drop things MORE than before? I did not stop the gabapentin--went w/o it a couple days --again-- and decided that was stupid. It does help--of course as with most things it helps 'some' takes off a layer of pain --which is very helpful.


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