Added note to my vent

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Hubby thinks that because it's not going to go away or get better, I should just go ahead and cut the amitriptylene out because it's not taking care of the nerve pain.Tina

[Guest guest]

Tina, so sorry things are so complicated for you to say the least. Been there many years ago with Dr’s, and that’s why today I am reluctant to even see any other Dr. than my primary. She says she can take care of everything anyhow, but I need to see some specialists, but have been putting off because I am so tired of explaining everything. Plus I don’t want to take any other medicines than what I take, and it seems like all the Dr’s just want to put you on this or that. My PCP will pretty much give me whatever I want, but she knows I don’t want to take any more than I can tolerate. Which isn’t much. I was going to tell you that flexeral did nothing for my spasms, nor for my husbands. I use small doses of valium, and its quick and cheap. Plus it’s been around a long time and has a good reputation for least amount of side effects. I can’t take baclofen as even at the lowest dose it causes extreme weakness and jello legs. Many Dr’s don’t want to prescribe valium though. As far as the amitriptyline does your husband know you can’t just stop it? You have to taper off otherwise it can be dangerous. He should look it up. My son was put on Wellbutrin and it has helped his nerve pain. Oh another thing you mentioned, are you bi-polar? If so I read that tricyclic’s which amitrip is, should NOT be given to someone who is bi-polar because it makes it worse. The newer antidepressant’s I think are okay the SSRI’s, like wellbutrin. Also flexeral is in the tricyclic family. I’m not bi-polar, but I get bad reactions from it and it never helped with any of my symptoms. MS or other stuff. I have a cousin-in-law that takes Lithium for her bi-polar. Hope things get worked out with the insurance stuff. That can be a pain too. Hugs, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of Tina SchmidtSent: Monday, September 19, 2011 3:27 PMTo: mserslifeSubject: Added note to my vent Hubby thinks that because it's not going to go away or get better, I should just go ahead and cut the amitriptylene out because it's not taking care of the nerve pain.Tina

[Guest guest]

Tina, so sorry things are so complicated for you to say the least. Been there many years ago with Dr’s, and that’s why today I am reluctant to even see any other Dr. than my primary. She says she can take care of everything anyhow, but I need to see some specialists, but have been putting off because I am so tired of explaining everything. Plus I don’t want to take any other medicines than what I take, and it seems like all the Dr’s just want to put you on this or that. My PCP will pretty much give me whatever I want, but she knows I don’t want to take any more than I can tolerate. Which isn’t much. I was going to tell you that flexeral did nothing for my spasms, nor for my husbands. I use small doses of valium, and its quick and cheap. Plus it’s been around a long time and has a good reputation for least amount of side effects. I can’t take baclofen as even at the lowest dose it causes extreme weakness and jello legs. Many Dr’s don’t want to prescribe valium though. As far as the amitriptyline does your husband know you can’t just stop it? You have to taper off otherwise it can be dangerous. He should look it up. My son was put on Wellbutrin and it has helped his nerve pain. Oh another thing you mentioned, are you bi-polar? If so I read that tricyclic’s which amitrip is, should NOT be given to someone who is bi-polar because it makes it worse. The newer antidepressant’s I think are okay the SSRI’s, like wellbutrin. Also flexeral is in the tricyclic family. I’m not bi-polar, but I get bad reactions from it and it never helped with any of my symptoms. MS or other stuff. I have a cousin-in-law that takes Lithium for her bi-polar. Hope things get worked out with the insurance stuff. That can be a pain too. Hugs, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of Tina SchmidtSent: Monday, September 19, 2011 3:27 PMTo: mserslifeSubject: Added note to my vent Hubby thinks that because it's not going to go away or get better, I should just go ahead and cut the amitriptylene out because it's not taking care of the nerve pain.Tina

[Guest guest]

I had mentioned Lamictal to my epilepsy neuro last time I was in there.  He doesn't want to make any changes to the epilepsy drugs (Trileptal and Keppra) because I'm not having any breakthrough seizure activity except when when I'm flaring - and then it's minor, not anything that results in a seizure.  The bad side effect is s s syndrome - it starts off as a rash on the trunk, but from I recall it can be fatal if not caught in time.  I believe, like Tysabri, the serious side effect is in the low numbers, though.  My son at 2 had a mild form of it (Erythema Multiforme minor) and it resolved in about 3 weeks, but not before inflaming his hip - the nurse practitioner was worried that it was infected and would have to be surgically drained, but luckily the tests came back negative on that.  The frustrating part about that was we took him to the ER with this rash, and they told us it was bug bites.  They gave us cream to put on it, it went away, and then it came back with a fever.  I kept telling the ER doctor it couldn't be bug bites because it was on the soles of his feet, and he was never without shoes, but he didn't listen to me.  Luckily, the nurse practitioner at the family practice we went to recognized it for what it was, because it has a distinctive pattern.

Tina

 

One other med I want to mention, Tina, is Lamictal.

I know n has warned against it, and MSwiss cheese brain has caused me to forget the warning....anyway, it does help with seizures I believe, as well as act as a mood-stabilizer. Just throwing it out there. Perhaps n can chime in and remind me of a possible danger with it. Best wishes on all this med stuff, Tina. It CAN get very complicated.

hugs,

Kate

To: MSersLife Sent: Monday, September 19, 2011 10:45 PM

Subject: Re: Added note to my vent

 

I asked hubby to clarify what he said....he SAYS he didn't mean that just because it's not going to get better I shouldn't treat it, but something about I shouldn't put my life on hold for symptoms that don't get any better.  Well this symptom DOES get better at times, I've just had a bad month.  Last night was the first night since June that I had the nerve pain so badly.  The Baclofen seems to have helped.  At least more then the flexeril did.  So that's something.  They tried me on Valium before, but it had no effect, and I'm a little afraid of taking at in the first place as my mom developed an addiction to it when she was on it many years ago, and most of the time when I get this muscle stuff, it requires mutliple doses.  Plus, it's a benzodiazepine, and I'm already on Klonopin for anxiety.  The Klonopin I usually don't have to take that often, but sometimes I go through periods where I have to take

multiple days in a row.Actually, all anti-depressants, especially the new ones, have the capability of making bipolar's worse.  The only one I've had a really bad situation from that though was Paxil.  I got diagnosed bipolar July 2, put on Paxil July 3, and spent 4th of July holed up in my bedroom crying.  After that I was put in " day hospital " so they could get me on a med and get me stable.  Towards the end of when I was on Remeron I had the same issue - enough that during the Christmas holidays my doctor changed my meds.  But amitriptylene has already been cleared by my psychiatrist, and it hasn't had any manic effects on me.  I actually haven't had any manic episodes in seven years, it's just trying to get the depression under control.  Last month (I think) my doctor thought the Cymbalta wasn't doing enough, so he added Zoloft to the med mix.  He didn't want to take me off the Cymbalta, because I was

put on the Cymbalta not only to help with the depression, but to help with the pain issues from the fibromyalgia.  So now he's afraid by taking me off of it, I'll rebound into a bunch of pain.  Wellbutrin is actually a bad choice for me, otherwise my psychiatrist would have switched me to it long ago.  It can cause seizures, and although my seizure neuro is okay with that - I really need to replace him, as he's the one that put me on Avonex knowing it caused seizures, which it did in me - I'm not.  The last med that I knowingly took that caused seizures was Avonex, and even with a second seizure medication helping to control my seizures, I had them about every six months. 

But my Trileptal doubles as a mood stabilizer and an anti-convulsant.  I actually switched over from Tegretol because Trileptal works better in stabilizing moods - and at the time, I had known Tegretol raised cholesterol levels, and my cholesterol

was sky high.  I only found out recently that Trileptal has that same problem, as my cholesterol levels are now where they were when the Tegretol had blown them up.  And lovely, I remembered, after taking it of course, that the imitrex my pcp prescribed Friday for migraines was never approved to be prescribed to me before because it causes seizures.  Go figure.  And it sort of helped the headache - at least it didn't get up to level 10 proportions this time. 

Things are just....well, they just are.  My MS neuro didn't see how I was able to function with all these meds running around in my system, but I've been on some form of med or another since I was 16.  Basically my body was trained early on to get used to the sedating effects of meds quickly, and now, although I require probably about 10 hours of sleep, it's not all that much, considering the MS and the fibromyalgia.  I think medication wise,

I was worse off a few years ago - I didn't have the Keppra, or the pain killers or muscle relaxant, but I was on Topomax at night (for mood stabilization) which had me so hung over I had to go off of it because I was getting in accidents in the morning.  I couldn't take my morning meds until the morning " hangover " had worn off or I wouldn't be able to walk.  That all ended in a nervous breakdown and a month off work.....so that was 5 years ago.

Tina

 

Tina, so sorry things are so complicated for you to say the least. Been there many years ago with Dr’s, and that’s why today I am reluctant to even see any other Dr. than my primary. She says she can take care of everything anyhow, but I need to see some specialists, but have been putting off because I am so tired of explaining everything. Plus I don’t want to take any other medicines than what I take, and it seems like all the Dr’s just want to put you on this or that. My PCP will pretty much give me whatever I want, but she knows I don’t want to take any more than I can tolerate. Which isn’t much. I was going to tell you that flexeral did nothing for my spasms, nor for my husbands. I use small doses of valium, and its quick and cheap. Plus it’s been around a long time and has a good reputation for least amount of side effects. I can’t take baclofen as even at the lowest dose

it causes extreme weakness and jello legs. Many Dr’s don’t want to prescribe valium though.

 

As far as the amitriptyline does your husband know you can’t just stop it? You have to taper off otherwise it can be dangerous. He should look it up. My son was put on Wellbutrin and it has helped his nerve pain. Oh another thing you mentioned, are you bi-polar? If so I read that tricyclic’s which amitrip is, should NOT be given to someone who is bi-polar because it makes it worse. The newer antidepressant’s I think are okay the SSRI’s, like wellbutrin. Also flexeral is in the tricyclic family. I’m not bi-polar, but I get bad reactions from it and it never helped with any of my symptoms. MS or other stuff. I have a cousin-in-law that takes Lithium for her bi-polar.

 

Hope things get worked out with the insurance stuff. That can be a pain too.

Hugs, Jackie

 

From: MSersLife [mailto:MSersLife ] On Behalf Of Tina Schmidt

Sent: Monday, September 19, 2011 3:27 PMTo: mserslifeSubject: Added note to my vent

 

Hubby thinks that because it's not going to go away or get better, I should just go ahead and cut the amitriptylene out because it's not taking care of the nerve pain.Tina