Insomnia has been my Battleground

[Battleground]

Check out my profile on my site name BATTLEGROUND. My problems are Primary Leg Movement which takes place whenever I lie down to try to sleep. Inherited Restless Leg Syndrome and Insomnia. It has been my Battleground for 25 years. I did not find communities for Insomnia or Primary Leg Movement in Sleep. If they exist please point me to them

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Hello! Since PLMS and RLS co-exist for a lot of us, you've found a good one for that. Lots of people on here suffer from insomnia as well.

[Parminter]

Do you take any meds, Battle? We need more information.

[Battleground in reply to Parminter]

As far as the RLS is concerned I have been in remission for 1 and a half years now. This happened when a neurologist I was seeing for a nerve test looked at my meds and ask if I was taking CLONAZEPAM for Restless Legs, I wasn't. My GP had given it to me to help with the tumbling thoughts when I was trying to sleep. The neurologist said he perscribed it for RLS. I told him that I had had RLS since I was in college but was in remission. Then everything fell into place and turned out to be one of those Serendipity moments. The RLS had shut down when I started on the CLONAZEPAM.

My main reason now for joining this site is my Insomnia and PLM , and because I can't sleep the jerks are when I am awake. When I first started down the long long road with insomnia ( a sleep Test) identified the RLS and PLMS I was given TYLENOL III. It worked for a while and then I started working through all of the new Sleeping meds that came on the market over the years. None worked until AMBIEN but I cannot take it due to being highly allergic to it ( I sleep walk, sometimes leaving home and driving) I live alone.

Any suggestions would be appreciated.

[Parminter in reply to Battleground]

The sleep med that the RLS experts most approve is Eszopiclone, a new and altered version of zopiclone.

Another is Suvorexant, very new on the block, which works through a completely different pathway from other sleepers.

The sleep problem is as a result of the hyperglutamatergic state of the RLS brain. And this is why experiments are now being made with dipyridamole, which increases the amount of adenosine in the brain. Glutamate excites the brain, adenosine calms it, and we have too much of the former and too little of the latter.

Dipyridamole is a well-tested old drug with a well-known safety profile. It is a mild blood thinner. It would be worth trying at 100mg to 200mg per day.

Another drug that might help is a BP drug called Pratsiol, which was found to assist hugely with the sleep of traumatised army vets. (RLS brains share similarities with PTSD brains in that we all have similar structural differences, to whit a thinning of the somatosensory cortex).

I tried Pratsiol and it helped - so they took it off the market where I am - Sod's Law.

Whether any of these will help in your particular circumstances I do not know, but not sleeping is appalling, and one has to keep trying everything.

[Battleground in reply to Parminter]

Thank you. My primary Dr. has not been helpful at all. In my discussions with him about the insomnia I have never heard of the drugs that you mention. I will certainly bring them to his attention.

[Parminter in reply to Battleground]

You did not mention if you are on an RLS drug. If you are on a dopamine agonist, that could be the cause. Pramipexole kept me sleepless for years.

And most doctors do not know about these drugs. With this condition you have to be a sleuth.

[Battleground in reply to Parminter]

My restless legs are in remission due to the medication that I was given for my tumbling thoughts at bed time (CLONAZEPAM). I have never taken any meds. for RLS after Tylenol III stopped working. My problem now is PLMS and I have nothing to take for that which is the reason for my insomnia. Last night I had the jerks all night long. I wanted to ask you if any of the Meds. you listed in your last message to me were for Primary Limb Movement. That is now what is the reason I am unable to sleep. When I was first given a sleep test the jerks were 30 times a min. and were not as forceful as they are now thus I was not awakened by them. Now, they may still be coming at that same rate but I am awake and they are much stronger.

[Pippins2 in reply to Battleground]

According to Dr Buchfuhrer the Dopamine Agonists work for PLMD better than the opiates. Should you try a dopamine agonists I would request Neupro patch as it has the lowest rate of augmentation but I can attest that it does still occur. Keep to the 1mg dose if you can. Good luck

[Parminter in reply to Battleground]

This sounds awful, Battleground.

I have read somewhere that PLMS/PLMD is also associated with low iron levels in the brain, leading to problems with the dopamine system. So what helps RLS may help with PLMS. Pippins is correct, and it is worth trying a low dose of a dopamine agonist as she suggests.

The problem of augmentation is always there, but with the Neupro patch the chance is lessened.

First get an iron panel done, specifically ferritin, and correct levels of brain iron if they are insufficient.