Ropinirole and trokendi bad mix for m... - Restless Legs Syn...

Restless Legs Syndrome
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Ropinirole and trokendi bad mix for me. Where to go for help in New Jersey?


I was taking ropinirole and trokendi for several months. Trokendi for fibromyalgia and ropinirole for RLS. Felt sick nearly all day and night for those same several months but at least my legs were not jumping all night. Unfortunately the ill feeling increased- vomiting in the middle of the night, coughing, tingling in fingers and toes, blistery feeling in esophagus and on soles of feet, numb lips,confusion, stumbling, nausea, sadness, etc. Symptoms increased until one night I was so ill I could not stop vomiting. I called poison control out of desperation and was told that I may have had allergic reaction each time I took meds and it finally just caught up. I stopped both meds immediately. Doc was away, covering doc did not seem to care, finally a friend who is a nurse practitioner looked up both meds and said they should not be taken together. Anaphylactic reaction. Withdrawal was bad for a few days but I feel clear headed for the first time in months. Cant see doc for a few more days. Now I need to start from the beginning and get proper care. I live in New Jersey and I need to know where to go for help. Any suggestions? Will travel prefer to stay on East coast if possible. Taking 50,000 mg iron twice a week bcz doc said iron was low. Number was 17. Any advice is appreciated!

4 Replies

Until you find another doctor, you may as well try the diet route. If you are consuming sugar, try to avoid it as much as possible. i.e. no cookies, chocolates, candies, cakes, sodas, or any sweetened food and sweet fruit juices. Also try to avoid high carb foods, like french fries. Artificial preservatives can also be a trigger, mainly the sorbates, like potassium sorbate they put in margarine, sauces and dips.

You may find that this helps both the rls, and fibromyalgia. If it doesn't you haven't done any harm, may have benefited your general health and not cost you anything.

in reply to Eryl

Thanks so much for your help!

Geeze - that is a low Ferritin Level - I would immediately take the Supplement Ferrous Bisglycinate Chelate - sold by many brand names, manufactured by Albion. It can be a game changer. This form of Iron supplement in innocuous in that it does not cause constipation or other problems. It also has demonstrated a greater degree of crossing the Blood/Brain Barrier.

The best treatment on the East Coast is Johns Hopkins Neurology Department, Center for Restless Leg, here's the link menu is on the left

in reply to DicCarlson

Thank you so much for your help. I appreciate the feedback!

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