Feel like I'm going crazy

[Justwanttocry1964]

I'm 41 and the past 6 months i can't sleep because I feel like I have rls in my whole body it's getting worse I want to cry at night and no one understands what I'm going through I have tryed everything and nothing seems to help unless I get one of my moms heavy pain meds ,, I'm lost what to do any help appreciate

[Madlegs1]

Sorry for your situation.

You say you've tried everything? What exactly have you taken over the last few years?

What changed six months ago- did you take a new medication?

We need to know these info- medecines and dosages - before we can comment.

Please come back with these details - I have a strong idea we'll be able to help you.😜

[nightdancer]

Some people say they have tried "Everything" and do not realize sometimes what "everything' entails? What changed 6 months ago, are you on any meds for any other condition, over the counter or prescription? All meds count when it comes to RLS and when it gets worse. Did anything change that you can think of? it is time to look for some better help, do you have a doctor, first of all?

[Suckerbeagle in reply to nightdancer]

Good questions, Nightdancer. Great user name too...

[vegasterrier55]

Check my post vegasterrier55 it might help!!

[chatnic1929]

I have suffered from RLS for weeks. I f I did not have a good night sleep, and tried to catch up during the day, I thought RLS would torture me to a point when nothing helped. As of 3 weeks ago my Dr. prescribed Pramipexole 0.125 mg to take 4X a day /Bfst/Lunch/Dinner and 1 before turning in at night. Knock on wood, For two weeks now I have NO, and I mean NO problems. It is like a miricle - and I hope this will continue. It works for me, I hope it will for you!!

[Hidden in reply to chatnic1929]

Hi Chatnic, I am a bit concerned on the dose of the pramipexole you are taking. The new recommended dose for a dopamine med like pramipexole, is no more than .25mgs as augmentation is a big issue when taking this med and keeping to dose as low as possible is better. Yes, it working well for you now, but further down the road you could start with augmentation, its where this med turns against you and instead of helping the symptoms it makes the symptoms worse.

Your doctor should have just started you off on one pill .125mg to start off with, then increase to two pills if needed. If those two pills didnt work then its now advised by the RLS experts to come off of them and try a different class of meds.

This forum has many posts on taking more than .25mgs of pramipexole and augmentation.

[chatnic1929 in reply to Hidden]

I appreciate your comment but I do have faith in my physician who is a well known neurologist. I have an appointment with him later this month and will let him know the concernns, you have expressed for which I am thankful.

Nick

[Bkc1777 in reply to chatnic1929]

Get off that medicine and find and alternative please. It will be the best thing you will do for yourself! In my cases iron worked so maybe you get your levels get checked and maybe wean off slowly ? Please check with your doctor.

It won't be easy coming off pramipexole but believe me it will be all worth it in the end.

Good luck! (

[Suckerbeagle in reply to Hidden]

Don't know if things have changed since I got a double blast of dopamine after the initial dosage stopped working. I'm in the US and it's been discovered that the drug companies who make the dopamine meds were not telling doctors about the side effects. Happy augmenting, boys and girls!

Another, less common but not totally unusual side effect is Impulse Control Disorder (ICD). If you find yourself engaging in any compulsive behaviors and can't figure out what's going on, consider the dopamine. Something like 15% of dopamine users experience an ICD. Billy Connolly, the Scottish comedian, was was treated for Parkinson's with dopamine and became a sexoholic( or whatever it's called). Google him and hear what he says about it.

ICDs can center around gambling, drinking, food etc. a woman in my support group told me she started talking a blue streak while on dopamine and couldn't stop herself. She approached me after a meeting where I talked about ICDs. So, most people aren't going to develop an ICD, but we, the patients, would do well to know know as much as possible about our disease, available treatments and quirky but not so funny side effects.

Good wishes to everyone,

Jeanne

[JoeR in reply to chatnic1929]

Pramipexole is great isn't it until its not. I think you have started on a high dose. In a while perhaps six months , it varies with everyone, when Augmentation starts and your conditions return do not up the dose. That's when your problems all start again. I know this is not what you need to hear but its what happened to me and now I need to come of pramipexole. My doctor eventually put me on 6 tablets a night. They stopped working like all the other quantities. I am trying to come of them. OH WHAT FUN?????

Good Luck

[nightdancer in reply to chatnic1929]

As others have said, if it stops working as well for you, you should not up the dose. the starting dose is .125 mg and then up from there, but the new starting dose IS .125 mg. And, for all meds, the lowest dose should be started at the beginning. Then if the lowest dose does the trick, you do not have to up it, and upping it can run into problems, but take the sleep while you can get it. Good luck, but keep track of that dose.

[Suckerbeagle in reply to chatnic1929]

I agree with Elise on your dosage. I do understand how absolute relived you are to be rid of the horror. But, yeah, 0.125 is way to much. I was put on 0.25 and this was a sheer miracle. One year later it stopped working. This was, maybe, 15 years ago. At that time augmentation was largely unknown. So my GP doubled it. Ah, more relief...until 8 months later that stopped working. In the meanwhile I developed an Impulse Control Disorder (ICD), a well known side effect of dopamine agonists. Thirty-five pounds weight gain later and it stopped working. I was sent to a neurologist, Dr, Betsy Sherry of Mt Auburn Hospital in Cambridge, MA. The 2 ½ weeks until my appoint were all but unbearable. Dr. Sherry took care of me, saw me through augmentation—I really didn't think things could get worse than they had been those 2 1/2 weeks, but was sadly wrong. I suggest you find a neurologist specializing in RLS. It can't hurt and you may be very glad you took this step now while you are feeling okay. I am on other medication now that works well.

Sorry to be a bummer about what feels like a miracle. So very many of us have been there which is why we caution you before thing go haywire.

Make sure you research the doctors. You need not just a neurologist but one conversant with this devil known as RLS.

YOU ARE NOT ALONE! Coming down on your dopamine is the first step. It may still work for you on the lower dosage while avoiding augmentation. It may work for many good years to come. There are people who've been on it for way longer than the one year that it worked for me. Be aware of any unusual behavior of a compulsive nature. About 20% will develop something like this.

Hope to hear from you on your RLS journey.

[LadyAgnes]

'no one understands what I'm going through" Don't worry,hon, I do. During the day if you met me you would not call me crazy. I keep a loving home & have a wonderful life. But the RLS can make you feel insane.

I swear sometimes when my shoulder/arm is wonky I would smoke crack cocaine to get relief.

So, no, dear, you are not crazy & we do understand. I have no answers, just sympathy. Only prescription medication helps me.

xox

[Suckerbeagle]

Wow! Glad the opioids worked. I think your next move might be finding a specialist who can work with you on finding something in that category. It might not have to be a heavy-duty dosage. You didn't mention if you had tried other medications or not. A good specialist can help you understand how the different meds work, either alone or with other scripts.

It can be difficult to find the right doctor. It's frustrating because while there is more awareness of RLS, and more medical and holistic treatments are being considered, we are still sorely lacking in doctors who really understand this wily neurological syndrome. You're better off if you're in or near a big city. My own experience has been learning not to give up when you have a doc that doesn't get it. If you're in a certain kind of area, you might have to travel to find help. I waited 9 months before jumping ship from a neurologist who had only ever treated sleep apnea. He wasn't even trying. He should have told me he wasn't qualified to treat RLS. Or...he could have studied up on it at least.

Oh dear. Afraid this is turning into a rant and not about your original post. Apologies. I'm trying to say that you're in a good position right now to search for the right doctor. Maybe you've already found someone. I wish you many years of good sleep and great medical care. Until there is a cure...

Jeanne

[Hidden]

No, buy ferrous bisglycinate and don't think about it. Our brains are anemic. The oil is a temporary fix at best.

[Bkc1777 in reply to Hidden]

It helped me! Xx

[1234Chicken]

It’s horrible, I dread bedtime. I’m so sorry you have to go through this.