Posted by saoirse1 on May 18, 2008 at 11:33:00:I have been dealing with symptoms with increasing frequency since 11/05. A bit of background: I had brain surgery for a benign tumor 5/05. 10/05 I was diagnosed with Hashimotos Hypothyroid. ( taking synthroid .137) I am told these symptoms unrelated I have finally been diagnosed with RLS by my neurologist. I do have some of those symptoms, the terrible *gotta move* feeling in legs, painful burning feet ( i call it fire ant feet) etc. But I have also had morning symptoms I can only refer to as The Heebies :) I have awakened suddenly in the early ayem, feeling startled, stressed,wired but tired, a terrible sense of dread,Jumping out of skin, like a negative adrenaline rush. These symptoms are difficult to describe, but it is already determined to not be panic attacks. Have had those as well.
Anyway, it seems to be relieved when I get up and move around for a few minutes in the morning, altho the feelings linger sometimes through the day. So the internist, before I was told RLS by neuro, dubbed this a sort of Restless Syndrome. I did have very low ferritin/iron at the time; he thought this to be sole cause. Dutifully I took the dread iron pills, values went up and symptoms did not abate. Had very full intensive work up with endocrinologist, sent there by GYN. Cortisol, catecholamines, other adrenal tests, all the bells and whistles.Only seemingly noticeable result was low dopamine. They took this result with little concern. Was told by this endocrinologist that she felt just awful I was having these "strange symptoms". She wished there was something she might offer to me in the way of hope. Unfortunately there was none to be had. Essentially saying this was Hopeless. Only hopeless moment there was any chance of of my return.
Finally the diagnosis of RLS from the neurologist. He gave me Requip. I was nervous about it at first. But it worked like magic from the first tiny pill last Fall. The actual RLS symptoms abated and almost immediately the bad wakings ceased. O forgot to mention early morning horrific and vivid dreams were also part of that.
I thought it was all solved. Was taking 2 mg at night. But then came at first a small weight gain, minor edema. Little short of breath. This around end of January. Then out of nowhere the symptoms increased in severity . I gained more than 25 lbs in 10 weeks. My feet/ ankles/ fingers/abdomen were terribly swollen. This is long so I will suffice to say I had all sorts of tests for this, including for congestive heart failure. No one had an answer. Back to the neuro. Took one look and he determined this to be what he called a rare side effect from the Requip. Took me off it straightaway. I hated that because it worked so well, but those side effects were intolerable. This as of April 28th. I was started on sinemet. He told me straight out this does not work as well as requip, but was much less likely to give the same side effects. Said he could add darvocet if necesary, this he said can help as a sort of "cocktail".I am not impressed with this med so far.I also, btw, take ativan 1mg 3 x daily since the brain surgery, and 1-2 at night for help with sleep. Every other sleep aid he tried me on made the above symptoms worse, after seeming to work for a few weeks.
I have gone thru a sort of tapered requip withdrawal ( no fun) while adding the sinemet. He wants me to soon be taking 1 sinemet in the late afternoon and 1 at night. Right now I am up to 1/2 afternoon and 1 at night.
It is not much help so far. I feel very discouraged. Horrible to go back to where I was after those months of peaceful nights and normal wakings. I am also facing minor ( i hope) GYN surgery later this week which I hope will clear other "difficulties." I wonder has anyone out there had any experience with this intolerable Morning Restless phenomena, if so any suggestions greatly appreciated. Sorry this is so long.
- Re: RLS and Then Some Sandman 15:32 5/18/08 (1)
- Re: RLS and Then Some saoirse1 14:52 5/25/08 (0)