Seizures with RLS?

[molnaraliz]

Hi everyone!
I am new to this page, but i wanted to share my story with RLS.
When I was 15 I woke up one night to a terrible right-sided headache in October and immediately after had a 3 minute long seizure. After that it was keep getting worse day by day. After a week of having these seizures 4 times a day I was admitted to a hospital. They've ran some tests and had an MRI the first one of many to come. Every test came back negative.
I got admitted to two different hospitals then eventually the psychosomatic ward, cause they thought it was caused by a mental illness. They've found nothing. I was miserable, exhausted and was told multiple times that it was all in my head. I was put on 12 different antidepressants on the highest dosage, which made it all worse. After five months it seemed like it was getting better, doctors said that it might have been some kind of encephalitis, which must be curing itself but they refused to run any other tests.
In the summer my seizures were getting better i only had like 3 a month at this point. I thought everything is going to be just fine.
In September it all came back but it was even worse than before. At this point i've lost my ability to walk or talk properly, my memory was terrible. I had episodes of paranoia, hallucinations, balance problems and started experiencing depression. In January i had a 20 minute long seizure and was taken by an ambulance. And in March I was told to go to sleep specialist as i might have narcolepsy.
It was then in April that I was finally diagnosed with RLS. I was immediately put on sleeping and anti-seizure medications. It took a long time to recover as much as I could. I've learnt to live with my right-sided constant headache and all the above mentioned symptoms.
Since then I got I guess allergic to Neurontin after taking it for 6 months and was in the intensive ward to treat it, tried 6 different sleeping medications and my seizures almost completely disappeared. I am currently taking iron supplements, gerodorm and a bunch of vitamins to try to keep myself in check. Right now, they are treating me with stomach issues, joint problems and some not-yet diagnosed heart issues. I'm 18 at the moment, my doctors say i have a severe type of RLS but can't give me any further explanation.

Huhh that was a long one. I tried to write as clearly as possible, if you have any questions I am more than happy to answer. My question is that does RLS fully explain all of my above mentioned symptoms? Does a constant right-sided headache count as 'normal' with this disease? And the seizures, I still do not understand it (I was cleared of having any mental issues, so it is not caused by that and it is also not epilepsy).
I would be grateful for some kind words to keep going and would love to hear your opinions and stories about RLS. Thank you for reading and for allowing me to be a part of this community.
Aliz

[Rustsmith]

Very little of that sounds like RLS. A diagnosis of RLS requires that you have a irrestable need to move and that this need to move is relieved by getting up and moving. There are no tests that can be run for a diagnosis, just a series of questions. Most of your symptoms are not relevant (I should add that my RLS is rated as very severe). One little test that used to be run years ago is to give you a dose of a dopamine agonist med (also used to treat Parkinson's). This should almost magically resolve any RLS symptoms. An opioid will also do this, but is not as specific to RLS.

To me, it sounds like your doctors need to refer you to an expert, which usually means a neurology doc at a major teaching hospital. Constant headaches and seizures are not RLS and they are no way to live the rest of your life.

I hope that you can get some help that also provides you with relief from those symptoms.

[molnaraliz]

Thank you so much for your answer!
The way I got diagnosed was by a sleep test at a sleep lab. They've given me bunch of wires, like EEG, ECG and others to measure my breathing while I sleep. This way the results showed leg movement in every 30 seconds and pulse elevation by 20 beats every time it happens. He says it is RLS and it caused chronic insomnia and that is the answer.
Sadly they won't agree to give any kind of dopamine agonist medication or opiods as I'm only 18 and I'll probably need it more when I'm older if these symptoms won't subside.
I live in a small country in Hungary and so far I've been to every doctor here that could have helped me. I am open to go to anywhere to a neurology hospital, but I don't know where and who could help me.
Do you have any suggestions?

[Rustsmith]

I have had a number of sleep tests, so I am familiar with all the wires. Makes you feel a bit like a bionic experiment.

As for treatment, There are guidelines that are used to treat pediatric RLS in babies, so treating an 18 year old is easy. One approach would be to share this document with a doctor that you think would be willing to learn. This was published recently and is intended to educate doctors of the latest expert recommended treatments for RLS. https://www.sciencedirect.com/science/a ... 9620314890

As for centers in Europe that have RLS expertise, there are two that are certified by the RLS Foundation. The first is the Innsbruck Medical University, Department of Neurology, Sleep Lab and Sleep Disorders Clinic at Anichstr. 35, 6020 Innsbruck, Austria.

The second one is Sleep Center, Neurocenter of Southern Switzerland, Civic Hospital of Lugano, Via Tesserete 46, Lugano, Switzerland 6900.

[Polar Bear]

molnaraliz - I can add nothing to Rustsmith's post but could not let your post go by without a response. Oh my, you are only 18 and have been through so much. Rustsmith refers to the very simple test of taking a dose of a dopamine agonist medication (Ropinerole or Mirapex/Pramepexole or carbidopa-levodopa) to see if it helps your symptoms. Not to start a course of treatment which you say they will not try because of your young age - just to see if it will provide benefit (or not) and therefore be a little more of an indication as to whether or not you have RLS. Would your doctors be receptive to a request for what is a very inexpensive test? Even if only to humour you.
The Algorithm in Rustsmith's link above is excellent.

[molnaraliz]

Steve- Thank you for your recommendations! I will definitely look more into the hospitals you've mentioned. And the article is very detailed and different from the way I was treated before. I've already made an appointment with my doctor to hopefully get be on the right track and start treating this the way it should be treated.

[molnaraliz]

Betty- Thank you for answering and helping me understand this whole test. I've never actually understood it before and I had no idea that Mirapex was something like this. I've taken it before for a short period of time, but they said that it was for depression and after a few days they agreed it was too much for me. Was a supposed to feel a difference after only a few days? I'm reading the link Steve had sent and I hope my doctors will let me try this test again with more knowledge about it.

[Rustsmith]

molnaraliz, the test that Betty described should be almost instantly effective. For many of us, when we were first put on a dopamine agonist, we felt like it was a miracle cure. Only later did we learn that the miracle cure came at a price of augmentation. There is a delay of a couple of days for gabapentin/Horizant/Lyrica to reach their full effectiveness, but not the dopamine meds.

[molnaraliz]

Steve- I've also tried gabapentin and lyrica (horizant is not available in Hungary) but none of them worked. If anything it just made my symptoms worse. I took neurontin but I only got to 400mg before I got allergic. Does that count as a normal dose? Is it possible that those just don't work for me and still have RLS or should I question my diagnosis and ask another doctor about this?

[Rustsmith]

We all have different reactions to different medications. If you found that you were allergic to gabapentin, then Horizant would do the same thing because it becomes gabapentin once it is in the bloodstream.

An anti-depressant that is often suggested for treating depression in RLS patients is Wellbutrin. It is a mild AD and also provides a bit of dopamine action for RLS. Unfortunately, I had a horrible reaction to it. Its chemical structure is somewhat similar to methamphetamine and that is sort of what it did not me. I couldn't sit, much less lie down to sleep, for a week. My feet were so sore when my doctor finally provided help. So you never know.

As for the normal dose of gabapentin, 400 mg is sort of moderate. Many of us take 900 to 1200 mg, but if you are allergic to it, it doesn't matter if 400 mg was a high dose, you still can't take it and it wasn't helping.

[molnaraliz]

I can imagine how terrible it must have been with Wellbutrin, I can somewhat understand what it feels like to have a bad reaction to meds, but for a whole week, it's just cruel. I will try to get my doctors to let me take the dopamine agonist test and I will show them that link. I'll go from there hopefully it'll help and give me a bit of relief.