Re: Mirapex, Sinemet, Permax, Requip?

[Guest guest]

Hi Lindy,

Thank you for your response. I certainly understand your frustration with

the medications. I had what my neuro described as an idiosyncratic reaction to

Permax. The first night and at the lowest possible dose, I took the medication

at 10:00 pm. I was able to get to sleep within a couple of hours. I woke up at

4:00 am with severe anxiety and sweating profusely. I decided to walk down the

hall to the living to watch television, thinking that by focusing on something,

the anxiety would dissipate. Before reaching the sofa I collapsed. My husband

found me on the floor. By then I had severe nausea and asked him to bring me a

bucket. While he was gone I fainted. When I came to, the nausea and anxiety

were completely gone. My husband helped me into bed and I did eventually get to

sleep for a couple of hours. The next morning I felt fine, although somewhat

shaken by the whole experience. I had also taken my blood pressure medication

at bedtime, and I thought that this may have contributed to my reaction

(although I don't think that my doctor agrees). As with your cough, we all

react differently to medication. Heaven help those whose reactions are totally

unique. They must feel very alone. The only other time that I experienced

anxiety was when taking Sinemet.

I hope that your new doctor is sympathetic, knowledgeable, and helpful.This

disease is so especially difficult because first, it sounds so innocuous

(restless?) Everybody (including us) knows what it feels like to be restless.

That makes us sound like whiners!. Second, it defies the current knowledge of

the medical community. Many of us are taking medications that were meant for

patients with Parkinson's disease. No one really knows how they work for us, who

apparently don't have a reduction of dopamine. Wouldn't it be nice if there were

more research into our condition. I know that it has ruined lives, marriages

and careers.

Let me know how your treatment is going and thanks again for your response.

Mirapex, Sinemet, Permax, Requip?

I certainly understand how you feel. Kathy, what was your reaction to

Permax? I haven't tried Requip, butI have been the route with Sinemet, Mirapex,

Neurontin, and started the Permax last Thursday. It hasn't done a thing. I

have had to go back to the Mirapex, which causes the insommnia and headaches.

But, I then take a OTC pain killer for the headache. I am about to go crazy.

With the Mirapex, I developed a cough over several months. The pharmacist and I

looked over the insert and found it in the bottom in little bitty print that 1%

of Mirapex patients get a cough. Wouldn't you know it would be me? Too bad,

the Mirapex is the best thing yet, but I don't know how much longer I can go

with the cough, headaches, and insommnia. Am taking .5 to 1 mg. Klonopin to get

to sleep, but 1 mg just about draggs me out the next day. Oh, what to do, what

to do? We're damned if we do and damned if we don't.

I have a new neuro and he is an arrogant a--hole, which I told his nurse.

He is supposed to be a sleep specialist straight from UCLA to little old Conroe,

Texas. Obviously he doesn't have RLS, or he would know that the only thing that

is for sure is that RLS will be there at night. What we don't know is the

severity and whether it will be one leg, two legs, including one arm, or both,

or whether there will be hip and knee joint pain along with it. I told him I

needed some pain medicine sometimes with the Mirapex and that Tylenol #3 worked

best--for now. He said I didn't need it, but he would give me 10 until the

sleep study he wants me to go through. I don't think so. His office called me

today to set up the sleep study and I said I wasn't ready. I'll never be ready

with this guy.

So, I have a new neuro. I have an appt with her next week. I hope she

works out because she is the last neuro in town. She doesn't take my insurance,

either, but, I will PAY for anything right now. If she doesn't work out I'll go

to Houston to Baylor in the Medical Center.

I have found a new RLS friend that is my neighbor. My pharmacist told me

she was looking for other RLS folks and it just so happened she lives right here

about a 1/2 mile from me. I called her and we talked for an hour and she told

me about this new neuro. She is 80 yrs old and has had RLS all her life, too.

First thing she asked me was, " How old are you? You sound so young! " So I told

her I was 49 and I guess she decided I was old enough to have

RLS!!! So happens she is a retired teacher and principal. We have a lot in

common. She had been going to a RLS doctor in Austin and has started going to

this local neuro.

I didn't realize how much I've rambled. I'll report back after I see the

new neuro--my third in the last 4 months.

Lindy B. (49) in Southeast Texas

Serdikof wrote:

Hi Group, Since Sinemet caused severe augmentation and rebound,

Mirapex caused insomnia, and Permax almost killed me, it is with some

trepidation that I take my first dose of Requip. Any information that this

group could give me about dosage, effectiveness, side effects, etc. would be

most helpful. Thanks in advance. Kathy, 56, PA

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