More on stopping Mirapex (sorry....)

[Polar Bear]

debbluebird - I agree with doety. I 'got the papers out' when I divorced, again when I remarried. And recently my husband and I did an update on our wills. No big deal, just accounts that no longer existed and new numbers etc. If we had left the Wills as they were, all would have been sorted and dealt with as we had intended but it would have taken time, and that time (legal fees) would have had to be paid for. To update keeps it straightforward. I worked in a legal office for most of my working life and I am passionate about having affairs in order. Legal fees can erode an estate in a blink of an eye.

veldon7 - with regard to an antidepressant.
If I recall correctly Dr B has been known to say (on his letters page) that if depression is an issue it should be treated and then any increase in WED symptoms should be treated.
I can only speak for myself here and will say that 20mg citalopram does not appear to have had any ill effect on my WED symptoms and I am so glad that my GP doctor eventually persuaded me to at least try it with the promise that he would do everything in his power to help me if my WED symptoms increased. (I also have fibromyalgia)
I also think I have read that the rate of worsening symptoms because of an antidepressant is less that was previously believed.
I can't recall what the % was but do remember thinking to myself that it was worth the risk - I'm reluctant to state a figure in case I am way out.
Please note that I am saying here what I did, and what I understand with regard to antidepressant and WED symptoms.

Three weeks after starting 10mg citalopram (later upped to 20mg) the cloud started to lift and it was only then that I realised what a cloud I had been living with.

[ViewsAskew]

I don't think it's silly -- what's silly is to pretend we'll live forever! I worked in a hospice for a year (as a volunteer), but that's another story. I've filled out the "Five Wishes" form, about how I'd like to be treated if I'm incapacitated.
I believe that events in our life, like trips, hospital stays, even something like a marriage or divorce, can be times to get out the papers, re-examine where we are and what we want. We can't control everything, but we might as well do something about what we might control.

Three nights without Mirapex. I took some Tramadol and finally about 3 a.m., a low-dose Vicodin. I buzzed around, and then fell into bed at 5 a.m. and slept until 9. That felt like progress to me. I can't pretend it's gone, but even a little sleep felt wonderful.

Glad you slept some. Definitely progress.

[ViewsAskew]

debbluebird - I agree with doety. I 'got the papers out' when I divorced, again when I remarried. And recently my husband and I did an update on our wills. No big deal, just accounts that no longer existed and new numbers etc. If we had left the Wills as they were, all would have been sorted and dealt with as we had intended but it would have taken time, and that time (legal fees) would have had to be paid for. To update keeps it straightforward. I worked in a legal office for most of my working life and I am passionate about having affairs in order. Legal fees can erode an estate in a blink of an eye.

veldon7 - with regard to an antidepressant.
If I recall correctly Dr B has been known to say (on his letters page) that if depression is an issue it should be treated and then any increase in WED symptoms should be treated.
I can only speak for myself here and will say that 20mg citalopram does not appear to have had any ill effect on my WED symptoms and I am so glad that my GP doctor eventually persuaded me to at least try it with the promise that he would do everything in his power to help me if my WED symptoms increased. (I also have fibromyalgia)
I also think I have read that the rate of worsening symptoms because of an antidepressant is less that was previously believed.
I can't recall what the % was but do remember thinking to myself that it was worth the risk - I'm reluctant to state a figure in case I am way out.
Please note that I am saying here what I did, and what I understand with regard to antidepressant and WED symptoms.

Three weeks after starting 10mg citalopram (later upped to 20mg) the cloud started to lift and it was only then that I realised what a cloud I had been living with.

Yes, Polar Bear, there is not nearly the degree of interaction of antidepressants that was originally thought. Worst case is 2 in 10 people get extra WED. 1 in 10 or fewer applied to the rest. A 9 in 10 chance of feeling better and having no problems seems a worthwhile risk to me.

[doety]

Four nights off Mirapex; no sleep last night. Tonight I'll try Methadone. Last night I took Tramadol, then used some marijuana, no luck. I just ran into the wall, 5 minutes did it again. I was stupidly[i] walking around with my eyes closed because I'm tired, cried a lot. I'm useless

I wanted to research the whole glutamate thing -- I'd like to take a nutritional approach but know nothing. Besides the news that came out mid-May, do we have any posts about it? Are people trying it?

[debbluebird]

I want to do that too, but haven't figured it out yet.

[ViewsAskew]

Four nights off Mirapex; no sleep last night. Tonight I'll try Methadone. Last night I took Tramadol, then used some marijuana, no luck. I just ran into the wall, 5 minutes did it again. I was stupidly[i] walking around with my eyes closed because I'm tired, cried a lot. I'm useless

I wanted to research the whole glutamate thing -- I'd like to take a nutritional approach but know nothing. Besides the news that came out mid-May, do we have any posts about it? Are people trying it?

The following is in response to the two posts above. Doety said she wanted to research and take a nutritional approach to reducing glutamate. debbiebluebird said she also wanted to figure it out.

----------------------------------------------------
The research about glutamate is preliminary - it didn't come with recommendations. All we know is that we have more glutamate than people without WED/RLS. It was also a very small sample size. We also know that GABA drugs reduce glutamate. But, are there other ways - such as nutritional ones? According to internet sites, yes there are. I found sites when I did a Google search of places that indicated that you could reduce glutamate by eating different food.

Are these researched? I doubt it. They may not be based on science and they may not work at all. We also do not know that even if we reduce it, if that will do anything at all. Reducing it in the body may not reduce it in our brains, just as we have difficulty getting iron to the brain.

The research was done to find a reason that after we take dopamine drugs and we have no symptoms, that we still do not sleep well. It wasn't about reducing symptoms, although that may be a side effect. Also, as Beth said, it also doesn't explain why opioid use stop symptoms. We think we know why dopaminergics work and now we have a reason for GABA drugs to work - they help with the wide awake part. But, why do opioids word? What part of WED is related to that?

There are MANY questions remaining, which is why there is a second study. In the meantime, we can raise more questions and check out some hypotheses, such as that eating foods that reduce glutamate will help. We may find something out. We just can't be sure of anything related to it, other than 28 people with WED had more glutamate than people without WED.

[rthom]

what sort of ways are there to reduce it, or where can we find it, do you know?

[Polar Bear]

I reckon I'd start with a search on Google.

[rthom]

lol. rather broad search, was hoping for a narrower field. I will try to refrain from asking for the obvious.

[Polar Bear]

[doety]

If you go on Google and just type in "Glutamate RLS" you'll get a bunch of stuff. Dr. Allen -- the doc who's at Johns Hopkins that so many people on this board like, led the study. I've heard about the whole inflammation thing and how you're supposed to cut out sugar and white flour, etc. I've always pooh-poohed everyone joining the gluten-free diet craze. I know what it means for me. If I ever say "I'll NEVER NEVER do that, etc." it means I'll do it within a month. I was raised on white bread, biscuits, cornbread, meat and dessert with almost every meal, Cokes all the time. I was around parents who didn't even walk 10 yards to the mailbox. I've tried to change much of what I grew up with, but have a long way to go. I enjoy exercising. But I'm addicted to sugar. Shoot. It looks to me like I'd better start changing a lot of things. I know we're just finding out about all this, but I know making some changes couldn't hurt me.

Your mission, should you decide to accept it, is to find out about this new discovery (only tried on a small amount of people, I know) and report back to the rest of us. And I will too.

[badnights]

Just a thought, we only know that glutamate was elevated in certain parts of the brain in the 28 WED patients who were examined. I personally figure the correlation will turn out to apply to all, or almost all, WED patients, but more than 28 people need to be studied to be able to say that with confidence.

Both glutamate and GABA are neurotransmitters found in neurons of the brain and spine. (maybe other neurons too? I don't know). Glutamate causes neurons to fire (it is excitatory), & GABA causes them to slow down (inhibitory). Yet the one is made from the other.

The food we ingest is digested, broken down, & re-arranged, and the resulting bits are moved from various regions of the body to other regions, across capillary walls into parts of the brain, the intestines, whatever. Simply ingesting less glutamate will not solve the problem.

[rthom]

Ok, now I'm really confused. My original question was to ann about what she had read and was reporting about. I thought she was saying she found a good source of info, so I was asking about where/what that was. I also am not sure about gaba, gluten and glutamate--which was ann talking about (gaba I thought).

If she was not talking about something in particular, then I just need to know that-to resolve my confusion--thks

[ViewsAskew]

Ok, now I'm really confused. My original question was to ann about what she had read and was reporting about. I thought she was saying she found a good source of info, so I was asking about where/what that was. I also am not sure about gaba, gluten and glutamate--which was ann talking about (gaba I thought).

If she was not talking about something in particular, then I just need to know that-to resolve my confusion--thks

I've edited my post.

[rthom]

ok, ty