Just Joined - My Thoughts and Questions

[bryher]

Hello all,

Actually I joined here a few months/weeks ago. Thought I'd share my experience and also get some feedback.

I'm a 39 year old male. About two years ago I finally realized I had RLS. It runs in my family. I say "realized" b/c I now am sure I've has this for a long time, maybe my whole life. Two years ago it affected my sleep to the point I couldn't sleep. My leg would literally want to jump out of my body, the crazy feelings intense. I now understand how someone can go crazy to the point of not being able to live. My wife doesnt truly understand it and, as such, I dont get great support.

Anyway I was determined to beat this naturally (w/out drugs) b/c I was convinced its a by-product of getting older, and out of shape (A former college athlete I am not in great shape anymore). At about 15-20 lbs overweight I began seeing a Chiropractor who specializes in Neuropathy. Amazing person. Through him we were eventually able to pinpoint an area of my body where my RLS is triggered. Has anyone heard of the Piriformus Muscle?

http://en.wikipedia.org/wiki/Piriformis_muscle

I've found there's not much on the connection between the Piriformis and RLS. Hmmm, maybe its unique to me or I've stumbled upon something,

Anyway over the course of a year I focused on all of the natural approaches to RLS as well as stretching this muscle. (I'll post in the other forum and share what I did and how it worked). But EVERYTHING seemed to work, a little bit! And after some time I was able to at least live and manage with RLS. This means I could sleep at night, not very soundly, but at least I could wake up and function. Basically I was back at the point I have been most of my adult life. But I knew "it" was still there, lurking.

I couldn't beat it completely. And let me call out I thought I had it really bad...until I came here to the forum. Not only did I find a great group of people to commiserate with and get support from, but I learned how bad other people have it.

Anyway, in November of last year (2011) I talked to my family doctor about Requip. She put me on the 0.25mg does and instantly, the first night it worked! Wow! My life was changed. Of course, after a week or two it word off (not sure if it was augmentation). I kept upping the dose every few weeks or so. Finally, at about 2.25mg I decided to see a Neurologist. I was concerned about the dosage and if it would continue to increase (my primary had told me the Parkinson's patients took 3mg). The Neuro said not to worry.

Right now I'm on 3.25 mg. Each time I up the dose I sleep better. In fact, at 3.25mg I think this is the best I've slept my entire life!

On one hand, I feel like a new and different person, knowing my life has changed so much for the better.

On the other hand, I worry that this is just augmentation and the happiness I've found will soon end.

Either way I am glad I found all of you here and I can say there is hope. Nowhere else have I found the combination of passion about, and knowledge of, this debilitating condition we call RLS.

- bryher
PS - I spend alot of time on various forums over the years and have great respect for them. If/when I beat this you can be sure I will be a constant fixture here.

[jy13131]

Welcome to the club! I LOVE that you said what you did about the piriformus muscle because I KNOW that's the origination of my rls. I even had an MRI because I was sure I have a "pinched" something in that area.... But no luck. Anyway.....you may want to find an rls specialist to treat you as the acceptable dose for Parkinson's is actually much different than WE'D/rls. Your getting up on a pretty high dose if I'm not mistaken. It is hard to manage and often have to be doing a switch of meds, but the times that are good we learn to have much appreciation for! Hope you find much needed support here. What part of the country are you from?

[Polar Bear]

Welcome to the forum.
I notice that in the 6 months since you started requip your dosage has gone from .25 up to 3.25. This is a rather high single dose and has increased to this in a very short time. I have the symptoms 24/7 and take 4mg but it is spread over a 24 hour period. (although it is supplemented with tramadol).

Have you had your ferritin blood level checked. This is very important as it should be up near to 100 especially if you are on requip/mirapex. Doctors may accept 20 as being normal, but this is not so for rls/wed sufferers. This blood test is not done automatically and you should specifically request it and keep an eye on your level.

[bryher]

Welcome to the club! I LOVE that you said what you did about the piriformus muscle because I KNOW that's the origination of my rls. I even had an MRI because I was sure I have a "pinched" something in that area.... But no luck. Anyway.....you may want to find an rls specialist to treat you as the acceptable dose for Parkinson's is actually much different than WE'D/rls. Your getting up on a pretty high dose if I'm not mistaken. It is hard to manage and often have to be doing a switch of meds, but the times that are good we learn to have much appreciation for! Hope you find much needed support here. What part of the country are you from?

Thank you! I'm am so glad to hear of someone else with the same origin! Wow. Ok, I really need to see the right doctor then. Thought a neuro was the right choice but even he didn't seem to up on the disease. So then, are there actual RLS docs??

Oh! Also, I'm from PA.

[bryher]

Welcome to the forum.
I notice that in the 6 months since you started requip your dosage has gone from .25 up to 3.25. This is a rather high single dose and has increased to this in a very short time. I have the symptoms 24/7 and take 4mg but it is spread over a 24 hour period. (although it is supplemented with tramadol).

Have you had your ferritin blood level checked. This is very important as it should be up near to 100 especially if you are on requip/mirapex. Doctors may accept 20 as being normal, but this is not so for rls/wed sufferers. This blood test is not done automatically and you should specifically request it and keep an eye on your level.

Hi! Thanks for the feedback. so I had my ferritin checked before meds and it was fine. Are you saying check it now bc the meds increase it? Ok, like I mentioned above I really need to se the rig kind of doc. I think I saw a link on here about how to find one....

[Polar Bear]

No, the meds don't change your ferritin level, its just that the higher the level is the less chance you have of augmentation when using requip..

Do you know what your ferritin level is because what is normal for most folks (perhaps around 20) is not high enough for us.

[Wassy]

No, the meds don't change your ferritin level, its just that the higher the level is the less chance you have of augmentation when using requip..

Do you know what your ferritin level is because what is normal for most folks (perhaps around 20) is not high enough for us.

Sorry to butt in, but that's an interesting tidbit. My ferritine was 120. That may explain the potential augmentation. Thx !!!

[jy13131]

I think you have it reversed. The higher the ferritin the LESS likely augmentation. Is that correct?

[Polar Bear]

jy is correct, the higher the ferritin level the better.

A level of 120 is excellent.

A doctor may consider 20 to be normal but this is way too low for someone with WED.

[bryher]

No, the meds don't change your ferritin level, its just that the higher the level is the less chance you have of augmentation when using requip..

Do you know what your ferritin level is because what is normal for most folks (perhaps around 20) is not high enough for us.

Ah, ok. I cant remember offhand but it was over 50 and closer to 100 I think. When I had it checked we were looking for +50 and the results were in range. I'll have to check on it to be sure so thanks.

So, since we're on this topic....

With each dosage I sleep amazingly for the first week or so, then my sleep quality starts to dip. So I'd increase the dosage and sleep great. This has gone on since November, from .5 mg to the now 3.5 mg. Before finding this forum I through my body was becoming "used to", or tolerant of, the requip. Maybe my body is just figuring out a different path to torture me and sounds like that's what augmentation might be? The neuro said it could just be my body trying to figure out the right dosage.

Anyway, I think bottom line the medication isnt having the same effect. Is that "augmentation"??

I wont change the dosage until seeing the right doctor.

[Chipmunk]

Augmentation is when your symptoms keep getting worse and require higher and higher doses of the medication to get relief. It's kind of like drug tolerance, except when you wean yourself off the Requip your RLS symptoms might not return to where they were before. They can go back, but many times the symptoms stay permanently worsened. Because of this, anyone experiencing augmentation should discontinue the med as quickly as possible (using an opiod for 2-4 weeks to mask the rebound symptoms) and pursue non-dopamine treatments for the RLS.

[jy13131]

Augmentation is when your symptoms keep getting worse and require higher and higher doses of the medication to get relief. It's kind of like drug tolerance, except when you wean yourself off the Requip your RLS symptoms might not return to where they were before. They can go back, but many times the symptoms stay permanently worsened. Because of this, anyone experiencing augmentation should discontinue the med as quickly as possible (using an opiod for 2-4 weeks to mask the rebound symptoms) and pursue non-dopamine treatments for the RLS.

And I would add it may take up to two months to get completely stabilized off requip. It took me a good 3 weeks before I felt like I was no longer part of one long and bad dream!

[bryher]

ok thanks all. thats scary. i was very apprehensive about starting any pharmas which is why I tried to battle it naturally for over a year. neither doctor mentioned anything about any type of withdrawl. Now I'm concerned.

Well, I will carefully monitor to see if I'm augmenting. Since I only take the meds at night, I can kind of tell what my symptoms are like if, for example, i take an afternoon nap on the weekend. I'll have to pay attention next time i do that to see if they're worse. Or....maybe I can't tell for sure unless I completely go off them?

[jy13131]

I went back and reread a bit and saw that you asked if there are drs specialized to treat WED. In theory....a neurologist makes sense since they categorize it as both a neurological disease and a sleep disorder. However after finding a Drvwho thoroughly understands the disease.....I now know that VER FEW DRS KNOW SQUAT ABOUT US. And sometimes that leads to torturous results when they start treating with meds. I believe that we need to be interviewing our dr.s before they can treat us. For example if your dr cannot fully explain augmentation to you, or what the Mayo clinic algorithm is and is willing to follow it, then he or she may not be the right dr for you. Recently my GP said to me that I should really reconsider my situation before becoming a methadone addict and I think the MOST insulting part if that was that I probably know much more about treating WED and she is the one with the responsibility to help people. After a few questions I realized that she has very little idea how to properly treat WED. And as far as "reconsidering" .....well.....she obviously would have no idea the amount of nights I keep my poor fiancé up discussing how scary it is to consider taking meds that could undo years of work I've put in to take my life back from drugs. Or how incredibly miserable this disease is to make me even consider such action! A empathic and knowledgeable dr is crucial for treating what we have.
One more comment...I noticed that you said you hop around in the bed quite a bit, but also your wife had little sympathy. Can she NOT see your suffering? It's very apparent to my fiancé how uncomfortable this disease is and he sees my legs physically contracting. What is she not seeing?

[Wassy]

JY13131-well said and agreed, as commented a few times regarding same.