Ferritin level

[pattym]

My Ferritin level results was 51 but the saturation level was 56 which is high. So I am told with that % of saturation I am not getting as much oxygen to the brain. But I read that the ferritin level should be around 100 to be effective for RLS.
How would one know what the saturation level is without having a special test? What if I had taken iron supplements ? Many questions for my specialist.
Being so exhausted from EVB through this curve into my life.

I have had RLS since the age of 10. Mother, brother, sisters and now my children and grandchildren. My whole family is like the rest, going crazy and looking for a cure or at least something to help get through the night. The remedies have such side effects with being tired, memory problems, etc. I find it very hard to function but just have to keep on going. Don't know how my mother managed for so many years especially when it effects the whole body !!!
Just taking Mirapex .25 one hour before bedtime. Up half the night but better than being wiped out the next day from over load of meds.
When I get this saturation thing figured out, I think I will try the Krutom tea.

[ViewsAskew]

Are your symptoms worse since you started the pramipexole (Mirapex)?

I don't think the saturation level matters.....but I'm not sure. I don't have my books in front of me to try and find out. The only way to know if you've hit 100 or thereabouts is to have your levels tested every few months.

I've had it since I was a preteen - maybe 11 or 12 - but fortunately nothing like it is now. As you wonder about your mom, I wonder how my grandmother managed for all those years. Similar to your family, we know my grandmother, all her children, all of my mom's children, and all of my sister's children have it. It's kinda cool, in a way - at least we ALL understand! But, we all have it in extraordinarily varying degrees - from very, very mild, to very, very severe.

[pattym]

Mirapex has helped. For a long time I have been taking 0.125 along with different narcotics. The narcotics give me such a hangover that I just gave up and upped my Mirapex to .25. If I didn't take the Mirapex with the narcotics I had to increase the amount of narcotics to get relief. Sometime in the near future the .25 will make the memory worse and I will have to take a vacation from all of the meds. Every night I do a special stretching work out I made up myself. When the RLS goes into the arms and the rest of my body the only relief I get is sitting in a scalding hot bath. (My mom would take 3-4 baths a night.) It may take an hour of keeping the bathwater hot but eventually I can feel it dissipate. Some people tell me they take a hot bath before bed and it helps . I can do that and it doesn't do a thing. But I can get it under control with a bath once it starts ! I have also found that taking a hot cup of Siete Azahares tea (seven blossoms) with the Mirapex helps more than the narcotics that I have tried. I like the siete azahares made by Tadin (http://www.tadin.com ) when the RLS starts early in the evening. It has valerian root in it. McCormick makes it also without the valerian root. I like it better because it takes a bit longer to get me settled down. They have different flower blossoms in them. You can also find it in Mexico, or any Latino community.
I have a great Neurologist and we have experimented with many meds. I have taken Tylenol with codeine #3 for at least 10 years worked so well and then I started itching. As my neurologist said you just have to keep trying and something will finally work for you. I am really tired of trying. Just decided to go back to the Mirapex and play with it for awhile and suffer more.

[EeFall]

Iron supplements don't do much. I have had 3 infusions (they were 500 each) of ferritin over the years and they got it up to 335. Unfortunately it did very little to help my RLS. It just depends on the person, in your case it might work. Many of my sleep doctors over the years think that it is a problem of absorption of ferritin into the brain. You can have a lot of ferritin in the bloodstream like I do but if it can't make it to the brain it doesn't help.

Having to take more Mirapex and it not working as well is an indication of (I am so tired I forget the name of it ) but I as well as many on here have had that problem and the only thing one can do is to stop taking it forever and go on a cocktail of other medications probably including methadone or something similar. Some have found one med to take also. Augmentation, that is what it is called. I went for years trying to continue taking it and my latest and greatest doctor took me off of it completely about a year and a half ago. If you are augmenting you will be in a continual roller coaster ride of stopping and starting it until it won't work at all. I forgot to mention that if you are augmenting it will make RLS worse.

[pattym]

Yes, augmentation is a big problem. If I keep the Mirapex at 1.25 and with something else then it is o.k. But the something else just makes me so tired all the time. I just decided to up the Mirapex for a while without the something else, just to get some relief from that awful tiredness. I am up and down during the night but I can function better without the doped up feeling. It is a different kind of exhaustion. My brother went off all dopamine agonist so he could go to John Hopkins for testing. WHAT A TRIP THAT WAS !!!! What addiction he had. He was on Mirapex 2-3 mg. He was going crazy trying to stop it. That was a year ago. He is still having a lot a problems even trying methadone, etc. One of the doctors he had At John Hopkins has been trying to help him through it. They communicate by phone a lot. I am sure the testing that was done helps with the research but he said he would never do it again. (you would have to hear his story in order to understand.)
How did you get off of your medication ? What helped the best ?
Years ago before I started on the dopamine meds, my RLS was just awful until 2-3 am, then it would just go away. Not getting enough rest was better than the hangover I get from all the different meds I have tired. But when I saw what my brother went through getting off of it ...........
It appears the Narcotics accumulate in my body and after a few days I feel like the walking dead. No kidding. I am very happy for you to have found something that helps you through it.

[EeFall]

He was going crazy trying to stop it. That was a year ago. He is still having a lot a problems even trying methadone, etc. One of the doctors he had At John Hopkins has been trying to help him through it. They communicate by phone a lot. I am sure the testing that was done helps with the research but he said he would never do it again. (you would have to hear his story in order to understand.)

I have the same story. I also go to Johns Hopkins I flew across the United states to see him about a year and a half ago. I had to get off Mirapex, Lyrica, and Methadone all at the same time. I was very dependent on them all and went through terrible withdrawals. I slept very little for a month. With mine I pace 16+ hours a day without meds and don't sleep.

I am now on Suboxone and gabapentin but I am having problems again, it is never ending unfortunately.