Post Tumor RLS And Then Some

[aireamdh]

Have had following symptoms,increasing frequency since 11/05. Background:50F.5/05 Resection meningioma right parietal. 09/05 diagnosed Hashimotos Hypothyroid. Synthroid.137 TSH 1.87 FT4 1.40.10/07 neuro diagnosed RLS. Besides known rls symptoms had/have morning symptoms. Awakened early AM startled, stressed,wired/ tired,sense of dread,shaky,jumping out of skin,adrenaline rush. Difficult to describe, determined not panic attacks. Somewhat relieved getting up to move around. Before was told RLS internist called this a Restless Syndrome. Had very low ferritin/iron at the time.Took iron pills,values went up, symptoms did not abate. 8/07 Had intensive work up with endocrinologist, sent by GYN. Cortisol, catecholamines, other adrenal tests.Only noticeable result low Dopamine. This result met with little concern. After diagnosis RLS 10/07 started Requip. Worked like magic from first .Actual RLS symptoms abated, bad wakings CEASED. Was at 2 mg nightly. End 1/08 small weight gain, minor edema. Short of breath. 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. 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 brain surgery, and 1-2 at night for help with sleep. Every other sleep aid made morning "miseries"symptoms worse. Tapered Requip withdrawal while adding Sinemet. Right now taking 1/2 afternoon and 1 at night. Previous side effects have abated somewhat. But offers little help with night RLS. NO help with bad waking. Horrible to go back to where I was after those months of peaceful nights and NORMAL waking. Any help welcome.

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

It sounds like you have been diagnosed with RLS and requip worked for you well until it was determined to be causing side effects, and you were switched to Sinemet. One known side effect of Requip is swelling in the legs; it sounds like you had an extensive evaluation for all the symptoms you began experiencing after January 2008.
Sinemet works well for RLS symptoms, but has a higher risk of eventually causing what is called augmentation, or the occurrence of symptoms earlier in the day.

It sounds like you take several doses of ativan per day. While medications like ativan do help symptoms of RLS, ativan is addictive and tolerance can develop to it, so that higher doses are needed for the same effect. It might be advisable for you to try to find other medications for your anxiety and your insomnia; several of the anti-anxiety and insomnia medications do make RLS worse, but others do not.

Your episodes of waking up with several uncomfortable symptoms may be panic attacks, but there are several other possibilities.

It sounds like you have several symptoms and problems related to sleep, and you might find benefit from evaluation at a Sleep Disorders Center.

[aireamdh]

Thank you for the swift response.  I do wonder why Requip is the only thing that helped both night RLS and the bad waking, which I am told are not panic attacks. If you have any insight into that I would be most grateful to know.  The ativan is mostly used as a preventive for partial seizure, which I have not had since  before surgery 5/05 for resection of the meningioma in the right sensor/motor parietal area.

You mention several "other possibilities" for these morning episodes,  I would very much like to know what these might be, before I venture into Sleep Disorder Centers.  Thank you for your time.

[Lama Chahine, MD]

Without the ability to review your medical history and examine you personally, there are a number of possible causes that come to mind regarding your early morning symptoms. These include panic attacks which may be atypical (not the typical sense of anxiety and panic with palpitations etc, panic attacks come in many forms, but of course other possibilities need to be ruled out before that diagnosis is made), "paroxysmal nocturnal dyspnea", or episodes of awakening with sometimes a feeling of suffocation and suddenly needing to sit up and take a deep breath (sometimes this may be caused by heart problems, specifically congestive heart failure), sleep apnea, nightmares, and akathisia (which is most often the result of dopamine-antagonists, medications that counteract dopamine, that work opposite to sinemet or requip).

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[aireamdh]

Yes, thank you very much :)

And I will hang on to Hope that if the Requip helped, there must be another remedy out there somewhere.