A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

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debbluebird
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by debbluebird »

I don't remember how much of the Gabapentin that you are taking. But remember, if you decided to stop it, you have to wean down with this drug if you are taking it more than once a day. I'm sorry you are having these side affects. For me I just gain weight.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

debbluebird wrote:I don't remember how much of the Gabapentin that you are taking. But remember, if you decided to stop it, you have to wean down with this drug if you are taking it more than once a day. I'm sorry you are having these side affects. For me I just gain weight.


I have only taken it I think less than two weeks. Last night I did not take it and my wife just said to me, "You didn't take gabapentin last night did you?" I said, No I didn't how did you know?" and she said she could tell because my personality was back to normal. That is good and also scary at the same time. It was much more difficult to get to sleep last night without it though. I am not taking it again tonight and see what happens. I don't think I have taken it long enough to have withdrawals or anything like that.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

I went to the doc today and he was not happy. I should have mentioned the shoulder hurting sooner and probably the pain in my stomach too but WED seems to override other medical problems I have and put them on the back burner.

I had a number of x-rays and tests today and more tomorrow including seeing a specialist about my shoulder in a few days. The pain in stomach could actually be heart problems so I am having a stress test tomorrow, but more than likely it is my gallbladder. It could be an ulcer but he really didn't think so. It could also be stomach cancer so it has me a little freaked out.

While I had x-rays for my shoulder he said he thought it was soft tissue. He didn't elaborate, I should have asked about that but I assume he meant like the tendons. Not sure. I see an orthopaedic surgeon in a couple of days, I guess the x-rays must be for him.

Hopefully it is none of the above :wink:

ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

Whatever it is, hope it has an easy, fast, inexpensive fix!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

ViewsAskew wrote:Whatever it is, hope it has an easy, fast, inexpensive fix!



Sometimes life doesn't deal out good hands. It doesn't matter though because the card game doesn't last that long anyways.

debbluebird
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by debbluebird »

Soft tissue issues really don't show up in an x-ray. So if they think they see something in the x-ray, then they should do an MRI to really see what is happening.
Hope it all turns out well for you.

rthom
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

EeFall wrote:
debbluebird wrote:I don't remember how much of the Gabapentin that you are taking. But remember, if you decided to stop it, you have to wean down with this drug if you are taking it more than once a day. I'm sorry you are having these side affects. For me I just gain weight.


I have only taken it I think less than two weeks. Last night I did not take it and my wife just said to me, "You didn't take gabapentin last night did you?" I said, No I didn't how did you know?" and she said she could tell because my personality was back to normal. That is good and also scary at the same time. It was much more difficult to get to sleep last night without it though. I am not taking it again tonight and see what happens. I don't think I have taken it long enough to have withdrawals or anything like that.



I had to take stomach meds for pain if I take gabapentin and have a lot of unexplained body pain until I quit taking that med (and still do if I take it), have retried and found the same, it wasn't found on xrays etc. I just knew it was related and fixed it myself. Seemed odd that the more meds I took the more pain I had. Dr's disagreed---but had pain for ears and don't now---dropped the med, go figure--lol.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

rthom wrote:I had to take stomach meds for pain if I take gabapentin and have a lot of unexplained body pain until I quit taking that med (and still do if I take it), have retried and found the same, it wasn't found on xrays etc. I just knew it was related and fixed it myself. Seemed odd that the more meds I took the more pain I had. Dr's disagreed---but had pain for ears and don't now---dropped the med, go figure--lol.


Very interesting rthom. My stomach problems started about the time I started gabapentin this time. I hadn't taken it for several years, maybe I have just become allergic to it or something like you. This will be the 3rd night I have not taken it. The problem is the first night it was a little difficult to go to bed and stay asleep and last night it was much worse to stay asleep. I woke many times but I could live with it if it doesn't get any worse. Hopefully tonight it won't get worse. Maybe doc can figure out something else to take. On another thread someone mentioned clonazepam I think, I may have taken that once, maybe it would be a replacement. What do you use instead of gabapentin?

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Also I have not had stomach problems since Sunday morning. I stopped Gabapentin Sunday evening, and did not take it yesterday either. Wow.

rthom
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

EeFall wrote: What do you use instead of gabapentin?



Well I decided that I, like everyone here, was not likely to find a magic answer, so that being said I got busy deciding for myself what I would rather deal with, (like the lack of sleep without gabapentin or the side effects from it, etc.) so I don't take anything right now to replace it or take anything more than I absolutely have to in order to keep from going insane. For me it's the right answer, as I hate the feeling of being medicated and worry about my choices if I was overmedicated (or under-medicate--ie. drug holidays etc)
My other choice seems to be allow them to medicate me to the point of a zombie like state, this will get me 3 hrs a night sleep every night and some up to 5 hrs.
Most people seem to disagree with my choice, but it's keeping me at an even keel mostly. I Don't get much sleep at all so I'm not of the opinion that it's the right answer for others, just what I need to do.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

rthom wrote:
EeFall wrote: What do you use instead of gabapentin?



Well I decided that I, like everyone here, was not likely to find a magic answer, so that being said I got busy deciding for myself what I would rather deal with, (like the lack of sleep without gabapentin or the side effects from it, etc.) so I don't take anything right now to replace it or take anything more than I absolutely have to in order to keep from going insane. For me it's the right answer, as I hate the feeling of being medicated and worry about my choices if I was overmedicated (or under-medicate--ie. drug holidays etc)
My other choice seems to be allow them to medicate me to the point of a zombie like state, this will get me 3 hrs a night sleep every night and some up to 5 hrs.
Most people seem to disagree with my choice, but it's keeping me at an even keel mostly. I Don't get much sleep at all so I'm not of the opinion that it's the right answer for others, just what I need to do.


Unfortunately I think most of us with severe WED have to make the same kinds of decisions. If this dang disease would just stay the same then I wouldn't have to (it seems) continue to make the decisions over again because of a change in the medications. I mean, come on! I've been changing medications for going on 14 years. It is crazy.

Finally I get off all the drugs via Johns Hopkins Dr. E and then I have to go back on methadone 24 hours a day anyways. That was alright though because I was feeling good for a change, but it only lasted about 2 weeks when I realized that methadone effectively removes the urge to move completely (and that is an amazing feat) but conversely it also makes it difficult for me to sleep because it seems to jolt me with energy at night just when I need to be sleeping.

So then I try gabapentin which was a stunning success for a week or so until I realized that Dr Jekyll and Mr Hyde are not fictional at all, but real in my case. Gabapentin with methadone makes me tend toward the dark side of the force. I am just so sick of this, it never really ends. To take gabapentin and be the dastardly villain or to not take it and become me again (with little sleep).

Oh but there must be another drug that could replace gabapentin and yet have less of the horrible side effects that change my personality. I can tell you right now with great authority that it isn't going to happen. I'll find something that will appear to work for a few day, a week, maybe even a month but then for some inexplicable reason it won't last...

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

I'm heading for bed, it is the third night without gabapentin. It is after 11 pm and I get up at 5:25 am. If I am extremely lucky I will have about 6 hours sleep tonight, and that is a good thing. On the other extreme if I am very unlucky then I will be back up out of bed within 30 minutes or so trying to figure out what next to do...

rthom
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

I understand

Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

Eefall - its been a few hours since you posted and I sincerely hope that these have been spent in luxurious sleep. :)
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EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Polar Bear wrote:Eefall - its been a few hours since you posted and I sincerely hope that these have been spent in luxurious sleep. :)


I did sleep last night! It was difficult to get to sleep and I woke up several times but if I could do that every night I would never complain again. It is nice being really sleepy like gabapentin makes me but if I can just sleep, even lightly with methadone alone it would be fantastic.

I got my results today about my heart and it is in great shape, they gave me one of those stress tests yesterday where they hook all the wires up to you and have you run on the treadmill. I really think the dang pain in my upper stomach was caused by the gabapentin like rthom mentioned because I didn't have the pain today either and neither did I take the gabapentin. My personality is going back to normal friendly self, rather than a mob boss :lol: I just hope I can keep the sleep going. It is just after 10pm and I should go to bed but I just am too wired, maybe in another hour or so.

I got a bunch of other tests back today, blood tests, and everything looked good except one of them was something about the width of blood cells, or the volume I guess, and it was under 12%. I think it said 12% to 16% was normal. Usually someone is anemic if it is high, couldn't really find what low meant except that it means most of my blood cells are all the same size. In other words I don't know what in the heck it means :roll:

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