New member saying hello.

[legsakimbo]

Hi,

I'm assuming it's best to tell a little about myself, I'm 52 years old, I've suffered with RLS for around 25yrs, although I only discovered it had a name around 2yrs ago, prior to that I never sought any help with it, just put up with it.
In August 2010 I suffered a subarachnoid hemorrhage, this resulted in my first ambulance ride, first night in hospital, first experience of surgery, I was in the right place and after 7hrs in theatre I went on to make a decent recovery, within 2mths I was back at work and fully functioning, I'm a very lucky bloke.

I was back at home after 1 week but had to continue taking medication every 4hrs (night & day) for the next month or so, this meant having to wake at least twice during the night, which in turn made me more aware of the RLS, so I spoke to my GP about it and he immediately mentioned RLS, I had finally found out it was an actual recognised condition/illness. We discussed various ways to manage the problem, dietary modifications, excercise etc, he also mentioned that there are drugs available but I sensed he was reluctant to just write out a prescription without exploring further, I agreed with him at this point.

I did try different routines to see if I could lessen the discomfort but nothing worked, so he prescribed Mirapexin(?), I tried these for around 2 weeks (I think), yes they did help with the RLS but I could tell that other changes were occurring, couldn't put my finger on what it was but I just didn't like myself while taking those tablets, so I threw them in the bin and wrote to the doctor to let him know that I was intending to try and soldier on without the drugs, he did call me and was supportive of my decision, said I should not hesitate to go and see him again if required, a really nice, caring doctor, unfortunately he moved on to pastures new very soon after.

Anyway, since then I have done nothing about the RLS, just lived with it, it has taken its toll on home life, I wander the house during the night, obviously you will all know how that is, bloody awful.

Just recently I have started to make some serious changes to my lifestyle, lost over a stone in weight (and counting), stopping smoking with the help of Champix (I expect to be finished with them in 1 weeks time), my job is completely sedantary, I work from home, on the phone, so hardly move from the house, I have been out walking every day for the last couple of weeks, at least an hour a day, none of this has made a difference to the RLS.

Today I have been looking around for more info on the RLS and I find that the name of it has been changed, this name change is what has brought me here, I'll explain why.

The hemorrhage 2yrs ago I suffered was in the area known as the Circle of Willis, in laymans terms this is the area where the main arteries join up at the base of the brain, it was named the doctor who discovered it Thomas Willis, the very same Thomas Willis who recognised the symptoms of RLS some 350 years ago.

So, as you may well imagine, I am now keen to explore further to find if there any links between the SH and the RLS, or is it just coincidence that I have experienced both.

Not sure if anyone here can answer my question but I thought it the best place to start, who knows maybe there are others who have experienced similar.

As for the RLS, well I'm really hoping the lifestyle changes will bring some small relief, I can't remember the last time I got into bed and wasn't still awake 2hrs later, I do get to sleep but it's not proper rest, I couldn't even begin to estimate just how much sleep I do get each night but I know that sometimes it is less than 2 hours. I have had the odd doze during the day but I try my best not to, 52 is just too young to be taking naps.

So there you go, sorry for the longwindedness but thanks for reading anyway, not sure any of it will help others but I look forward to any responses.

thanks

[ViewsAskew]

So sorry you had to find us.

Sounds like you're committed, for now, to try lifestyle changes for relief. Some people are very successful. I hope you are. Do get your ferritin checked along with your hemoblogin. If your serum ferritin is less than 50, do consider taking iron supplements. If it's not at least 100, consider not taking any dopamine agonists again until it is (sounds like you don't want to, but a caution in case you change your mind). Also, consider anything else you take - several medications can worsen it. There is a group of people who get relief from medical grade stockings, also something to consider. If you are low in any vitamins (may not know it), people have been helped by E, D, and others.

If lifestyle doesn't work, we're always here to talk through pharma options.

I've not heard of anyone who had a hemorrhage as you did. But, since ferritin is involved, it could be that this somehow changed the iron in your system, creating more problems for you. Many people who undergo surgery have worsened WED. Could be the blood loss, could be something else. They aren't sure - just that it's a definite trigger for people.

[legsakimbo]

Thanks for your response, sorry for the delay but based on what you said I have been waiting to get hold of a copy of my recent blood test results, I'm really non the wiser but, for your info, the Ferritin was @ 25 and Haemoglobin was @ 142.

The test was not ordered due to the RLS/WED specifically but based on the results the doctor prescribed Folic Acid tablets as the reading was <1.0

Not sure if these figures mean I should be going back to the doctor, I mean I don't even ask for any help with it when I go anymore because I don't want to go back on the Mirapexin.

thanks in advance for any guidance.

[Polar Bear]

I don't know anything about haemoglobin results, but ferritin at 25 is what most doctors would consider normal.
However for sufferers of WED it is best if it is up around 100. Especially if you were taking the likes of Mirapexin.

Have you read the RLS Medical Bulletin which you can access via the link in my signature.
It has lots of useful information which you could discuss with your doctor with regard to WED treatment and I reckon it's quite ok to tell the doc that you don't want to go back on Mirapexin (or even Requip/Ropinerole which is another DA). Although it could be possible that Requip may work even if it is another DA.

As Views says, consider taking an iron supplement to get your ferritin up a bit, this can take time.

There are several different types of medication that are successful in the treatment of WED symptoms should you wish to take this path.
I would not push for anyone to take unnecessary medication and can only speak from my own point of view which is that I could not function without them.

[legsakimbo]

Thanks Polar Bear, appreciate your reply. I did already download the bulletin from your sig, did it last night and had a good read. I guess I just feel uncomfortable taking the medication, I've already dropped the Champix and am going cold turkey with the cigarettes, maybe I've some inbuilt aversion to meds, never even to anything for a headache until I was 40.

I suppose I need to decide whether to put myself in the hands of the GP, or try and sort it myself. When you say you couldn't function without your medication, how so, do they give you complete relief from the WED? What are the side effects of what you take? Hope you don't mind me asking these questions, feel free to tell me to mind my own business.

I have rwad up on how to raise my ferritin levels, as Views also pointed out, iron supplements, I assume they are available over the counter, if so I'll get some tomorrow, someone else mentioned Blackstrap Molasses, if it tastes like it sounds then I'm not looking forward to it, will go into town tomorrow and find some, health food shops would seem to my best bet.

On reflection, I think I'm just finding it hard to accept that my future is one of taking meds or whatever, not with a view to being cured but just to retain some sort of quality of life, I know there are people so much worse off than me but I'm struggling with it all.

[Polar Bear]

This disease is certainly a struggle.

To answer your question - I've had WED 24/7 for 30 years and have been taking medication for the past 6 years. It took a couple of years to work with the medications and eventually find a cocktail that gave me pretty much good relief of symptoms.

Prior to medication I jiggled at the movies, stood up in a restaurant at the table (always tried to get a table at a wall), walked the floors night after night.
At work I raised the working surface of my desk by putting a coffee table on top so that I could stand and work. I wept through a 9 hour flight from London/West Canada. The list goes on.
For many years I functioned on 3 or 4 hours sleep - on a good night and of course this would be broken sleep.

The main side affect that I am aware of is insomnia from the Ropinerole/Requip... at least I'm assuming the Requip has something to do with it. However I also have fibromyalgia and osteoarthritis (aged 63) so who knows where the insomnia arrived from.

The medications allow me to have a qualify of life. It is not 100% symptom free but it is so much better. Occasional codeine takes care of most of the breakthrough from my regular WED meds..
A sleeping aid (zopiclone) helps me sleep. Also I take amitryptiline for my fibro and this is a good sleeping aid. Amitryptiline is considered a high risk of aggravating WED but I seem to have been fortunate in this regard.

I can now go to the movies, visit folks and be able to relax in a comfy chair, go to bed and (for the most part) be able to read for a while, and go to sleep. Most nights I awaken for a wee while but get back to sleep.

It is up to you whether or not you decide to use medications.
Whatever you decide, make sure that you are well informed if you decide to approach your GP for treatment.
A willing and cooperative GP is worth his weight in gold. If he is not WED aware..... that can be ok if he is willing to take note of the RLS Foundation leaflets and information and work with you. Just make sure that you know as much as possible. Also read up on the over the counter meds that can aggravate symptoms such as Benelyn, cough mixtures, certain antihistamines.

Keep reading the posts.

Also there is the RLS Foundation web site and - the Southern California Site which has letters pages. Hundreds of letters answered by Dr Buchfuhrer. Most informative.

Sorry for being so wordy.... feel free to ask whatever you want.

If I can't help, someone else likely will.

[badnights]

Hi legsakimbo
I can understand your reluctance to plunge into taking medication. there are a lot of drawbacks.

A lot of us are forced into taking meds by simply being unable to bear life as it is anymore. Like polar bear, it took me years to find the 'right' mix - in fact, I'm still working on it, I make a change every few months (yes, mostly for the better, these days!). I have lost years of my life, partly to the disease itself and partly to the medications used to 'treat' it. Medications can get particularly ugly when they mess with your brain, tho perhaps part of the problem with WED meds is that most were developed to treat something else and found accidentally to have an effect on WED.

Nevertheless, keeping in mind all the possible pitfalls, it's worth it to try to find a cocktail that will work for you, once you decide to go the medication route. the trial and error can be time-consuming, but I ended up WAY better off than if I had just sat back and accepted what they gave me the first time. The right meds can give your life back... or most of it, anyway. And that's something, for sure.

I had to look up the Circle of Willis! Fascinating. Just a coincidence, I think, that your hemorrhage was there. As the others mentioned, worsened WED after iron loss - including from blood loss - is common, also WED worsening after operations is common but the cause there is not as clear (blood loss? exposure to opioids? subtle nerve damage? no answers, just guesses).

I think you're equipping yourself well to battle this disease ( or accomodate it, or however you want to view your upcoming relationship with it)i.e. You're on the right track - learning as much as you can. When you approach your doctor about it, it might help to present some printed information that you think is relevant, and ask his/her opinion on it. If you're lucky enough to find a doctor like your old one, you'll be set.