Thank you one and all!

Tried to reply to each of your welcomes but for some reason this site wouldn't let it go thru!

But I am so happy for the warm welcome

I am taking Gabapentin 1200mg at night and have been for at least 7yrs

Was on OxyContin also which worked great, was on that for 10 yrs

My family was worried about my being on a narcotic so long so I weaned off it about 3 months ago

Went on then Requip as I had tried that yes ago, without much luck

I'm trying to please my grown children but lately my thought processes have been deeply affected by sleep deprivation

Also found out I need to get off the Paxil I was put on 6 yrs ago after the death of my dear friend and husband

Guess SSRI's r horrible for RLS

Also need to get off Zestril, Calcium Channel Blockers for high BP r also bad

It will be a long process getting off the Paxil as I take the extended release form

I have been checked for low iron and I found out I have just the opposite

I have hemochromatosis which is an iron storage disease

My poor sweet Mom passed RLS and hemochromatosis to me

WOW

18 Replies

oldestnewest
  • SRI's ARE terible for RLS, and my usual disclaimer......... fior MOST people with RLS. These are NOT my words. ;) They are words from world renowned experts in the RLS field that I have used and could recite i my slep if I was sleeping that is. LOL Ylla, you have my email, so any time you feel like drop me a aline. :) And thank you for YOUR thank you! It is good to hear on certain days, like TODAY. Thanks from the bottom of my heart. We are`always to tell the truth on this web site and in this group, and that is what I do, as well as others with years and years of experience. As mentioned in another blog, I do not talk down to people; my only goal ios to educate, supprt and receive support. Sorry if some people misunderstand that. Talk to you later! ;)

  • Glad to be here for you. Hope you get all those meds sorted out soon and thing can look better for you.. :)

  • Hi, I have hemochromtosis too. I've been having venesections for 6 years to keep my iron levels down but I think they have been kept too low - in the 20s. According to the info posted on this forum, ferritin levels below 50 (or even 75) can be linked to RLS. So I have given up venesections for the past 3 months and my ferritin levels are up to 49. It's definitely helping - I have had much less RLS in the evenings for the past month.

  • My late husband had haemochromatosis and RLS, although we didn't know about RLS. He had venesection regularly for years too. Thanks to this site I connected his RLS to the low iron levels after the venesection -too late to help him tho'.

    I am eternally grateful for this site -it's helped me enormously, picking up bith 'tips' and authoritative advice from all on here. Special thanks to nightdancer and elisse.

  • You are quite welcome, and any time you need us we will be happy to help out as much as we can. "SUPPORT" is one of my favorite words, and that is what this group is for, plus correct information. ;) iron overload can kill you. I am constantly reminding people that they just cannot go out and start taking iron because they saw someione mention it on the internet. so sorry to hear about your husband. :( I must give that warning out every day at least 5 or 6 times her and other places. Like elisse said, "thanks for your thanks". started my day out nicely, thank you. ;) <3

  • I have heard of people who make too much iron. But i am not an expert on that one.

    Thank you dangermouse for your thanks, if anything i have said on here has helped you, then thats all good, and what we all try to do for each other. :)

  • You're both very welcome, support and correct information are both invaluable. [ There's no "I" in "support", but there is a "U" and an "S"] :-)

    I am not a medical person -so will you allow me to mention to ptilium [above] that I hope the decision to stop venesection was taken with medic's consent, or at least medic's knowledge - excess iron, over a certain level is indeed extremely dangerous. Simply because your iron level has dropped you must still have the tests frequently, as it will continue to rise. Venesection removes the excess iron only -it does not stop it accumulating again.

  • You are allowed to comment on anyones comment dangermouse, and i hope that plitium sees your comment to them and it helps them. :)

  • Yes, I stopped venesections temporarily with agreement from my GP and will have to start them up again once she and I have decided on a ferritin level that helps the RLS but is not too high. There's a Facebook discussion page on Hemochromatosis that''s a bit like this Forum and it's obvious from what I have read there that medics have widely varying views on how much iron is too much.

    It was thanks to this Forum that I found out my treatment for Hemochromatosis is affecting the RLS and I too am hugely grateful to all the knowledgeable folk who write here. I'll put it all in a blog once I (and my GP!) have worked out what ferritin level I need to stick to.

    Ylla, just wondering whether you have investigated your iron levels?

  • I dont know whether with your condition makes a difference, but the ferritin level for people with RLS is 75, it used to be 50, but has changed recently to 75. I dont know if that helps or not..

  • Thanks Elisse. I'm hoping my GP will be happy with me aiming for a ferritin level of 75. At 49 I have much better evenings than I did at 20-odd but I still need pramipexole to sleep at night. It would be great to be able to cut down on that.

  • Hi, Ptilium i had a very low ferritin level, every time it was checked, it was usually around 5-10.

    my neurologist put me on an iron pill, i took it as told, and it didn't help, so i was given more iron pills, took them all as told ..again. it did'nt help.

    All this went on for around 3 years, last time my bloods where checked, guess what low ferritin again, so i was told, more iron pills. By now i was sick at the sight of them, so told my neurologist, no i dont want them, he was not happy, and tried to insist i take them.

    I told him, if ive taken them for 3 years now, and they have not made a difference, why on earth would i take more, they simple dont help me, my body does not seem to absorb them.

    Since then i've found out that in some of us, our bodies just will not store the iron, so i would'nt count on iron to much, until you find out if you are like me, if you are, all the iron in the world will not help.

  • Elisse, Just wondering - do you have the original reference that recommends ferritin levels of 75?

  • I have them checked periodically

    I was having phlebotomies to keep my levels low enough but I try to avoid them, as they wipe me out.

    Will be starting Horizant soon

    Hope it helps. My PCP is letting me manage my meds because he frankly doesn't know what to do with me. That frustrating to me because I'm a nurse not a doctor

    Just can't find the right specialist for me and my medical insurance to cover

  • Hi

    I am quite new to all this health jargon. Can someone please explain what 'Guess SSRI's r horrible for RLS' means. I know it is helpful and quicker to abbreviate but it would be helpful for those such as myself if the words or phrase are typed in full the first time they are used in a question or reply. One has to remember that new Visitors and Members are arriving on these pages all the time. I do understand RLS!! Many thanks to those who note this for the future.

  • SSRI's are anti-depressant medications which can for most people make RLS worse. Look at this website for useful info and the treatment page gives what those meds are. I dont know myself what SSRI is short for either...just know they can make RLS worse. rlshelp.org

  • Hi Elisse - Looks like 'romany53' has given the long hand for SSRI's above. Thanks to both of you for replying and now Elisse, you also know what it is short for.

    I hope more abbreviations are expanded in future questions and answers and thanks to those who already do so.

  • Me to, helps a lot, if its fully explained.

You may also like...