RLS and Then Some

[aireamdh]

I am also posting this in the Neuro forum, due to my medical history. Hope someone can offer insight, my thanks  in advance :)

Have had following symptoms,increasing frequency since 11/05. Background: Brain surgery meningioma 5/05. 09/05 diagnosed Hashimotos Hypothyroid. Synthroid .137 Diagnosed RLS 10/07 by neurologist. Besides known night  rls symptoms had morning symptoms. Awakened suddenly early AM startled, stressed,wired/ tired,sense of dread,jumping out of skin,adrenaline rush. Difficult to describe, determined not panic attacks.  Somewhat relieved when I get up and move around Before told RLS, internist called this a Restless Syndrome. Had very low ferritin/iron at the time.Took the iron pills, values went up, symptoms did not abate. Had intensive work up with endocrinologist, sent by GYN. Cortisol, catecholamines, other adrenal tests.Only noticeable result was low dopamine. They took this result with little concern.

Finally diagnosis of RLS 10/07 Started Requip. Worked like magic from first .Actual RLS symptoms abated, bad wakings CEASED.
Was at 2 mg nightly.  At first small weight gain, minor edema. Short of breath. This at end 1/08. Suddenly symptoms increased.Gained more than 25 lbs in 10 weeks.Feet/ ankles/ fingers/abdomen terribly swollen. All sorts of tests including kidney,liver, congestive heart failure. No answers. Back to  neuro. He determined this to be rare side effects from Requip. Took me off straightaway. I hated that because it worked so well, but side effects were intolerable. This as of April 28th. Was started on Sinemet. Was told this does not work as well as Requip, but was less likely to have same side effects. Said he could add darvocet if necesary.Also take ativan 1mg 3 x daily since the brain surgery, and 1-2 at night for help with sleep. Every other sleep aid made above symptoms worse. Did tapered Requip withdrawal while adding the sinemet.  Right now taking  1/2 afternoon and 1 at night.Offers little help with night RLS. None with bad waking.  Horrible to go back to where I was after those months of peaceful nights and NORMAL waking. Any help welcome.

[Suri123]

Hi aireamdh, how are you doing? Hope you are feeling better? Have you had a sleep study and neurologist or a sleep specialist consultation? Are you able to sleep well these days and how about the restless leg movements? Are you still continuing requip? Go through this link for few updates on the RLS treatment:
http://www.medicinenet.com/restless_leg_syndrome/page2.htm
Do try to overcome your stress and keep yourself physically active.
It is better to get the sleep study and a drug review by a sleep specialist. Keep updating on your progress. Take care.

[aireamdh]

Thank you KatEyes. The Requip was no longer useful due to the severity of edema,sudden weight gain and increasing shortness of breath. Those symptoms are now slowly abating. I hated to give up the Requip, as I said, since it eradicated those "misery wakings", but nothing to be done for it.  Thanks also for your suggestions; I was thinking of requesting a sleep study and shall do so. The neurologist had earlier  brought this up as a possibility and then the Requip worked so well for 6 months that this was dropped. I do wonder what it might show.

[KatEyes]

I have RLS and PLMD. Spent a few years on Sinemet. Several more on Mirapex, now transitioning to Requip. None of these are without potential side effects. My current sleep doctor feels that Sinemet, a dopamine replacement, should be reserved for use after dopamine agonists such as Requip and Mirapex are no longer useful.

I can give you a few hints on optimizing the effectiveness of your Sinemet rather than keep raising dose: No protein to eat unless long enough before dose for the food to have already passed thru the small intestine. Small amout of starchy food food can help when taking med, but no large amounts of food before taking the med. No caffiene. There is also an ingredient in cough medicine that counteracts the med. Take it long enough to have absorbed in your small intestine before going to sleep. I would have to write a book to explain the whys on all this, but I have researched it mostly with info from the Parkinson's Foundation and comparable sites. If you follow these guidelines, you may find it works better than you thought.

Did you have a sleep study? You could have more going on than RLS causing those awakenings.