New to group.

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

New to group.

Postby Gayle » Wed Nov 28, 2018 11:00 am

Thank you for approving my request to join. I have been dealing with RLS for over 40 years and my symptoms have become increasingly difficult to overcome. I hope to learn from others and share my experiences with RLS with others.

Rustsmith
Moderator
Posts: 3890
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: New to group.

Postby Rustsmith » Wed Nov 28, 2018 2:11 pm

Gayle, welcome to the group. You will find that many of us are eager to share our experiences and our knowledge of RLS.

So, what have you tried for your RLS over your 40 years and what are you doing to manage it now? And do you have any questions for the group?
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Nov 28, 2018 9:47 pm

I've been through numerous neurologists. Some I fired because they would not help me. Some abandoned me because they could not help me. I've been on Mirapex, Gabapentin, Lyrica, hydrocodone, herbs, CBD oil, marijuana...and many other prescription drugs...so many I cannot even recall them all. Last fall, I met with a specialist at the Mayo Clinic in Rochester, MN. She currently has me in a transition with drugs which up to now, has not been successful in any way, shape or form. But I am willing to continue to hang in there until I know for sure it will work or it won't work. My last option is opioids. I don't hold out much hope for those, either. I was just prescribed some sort of pad-type of tool, I believe it is called Relaxis. I haven't received it yet so I can't tell you if it's useful or not. My score on the IRLS assessment is a 36 but I'm sure it would have been higher had I been honest at the time I was interviewed. Even when dealing with the experts, I fear appearing like a nut case.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Nov 28, 2018 10:05 pm

I do have a unique medical history but other than anemia, I don't see how anything else could be related to RLS. I had a brain aneurysm, successfully repaired with a coil before bursting, about 18 years ago. Malignant melanoma, which may or may not be cured. Only ongoing 6 month check ups can confirm whether or not it has spread. But so far, so good. A history of numerous colon polyps in between each colonoscopy at 3 year intervals; at one point reaching 58 polyps. I have a genetic history of poor circulation resulting in several stents in the groin areas and thighs. I have monoclonal gammopathy of unknown significance (MGUS) and have that monitored along with low ferritin counts every 3 months. When the ferritin drops, the RLS symptoms are out of control and I receive an iron infusion but it doesn't stop the RLS symptoms on a consistent basis. Does anyone else have these health issues or similar health issues?

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Nov 28, 2018 10:13 pm

Oh, I forgot to mention Tramadol. It was of no help, either.

ViewsAskew
Moderator
Posts: 15604
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to group.

Postby ViewsAskew » Wed Nov 28, 2018 10:48 pm

Anemia! And low ferritin! Both are linked to RLS.

How high does the ferritin get when you get an infusion? Mine is currently over 300 after multiple infusions. This has allowed me to use pramipexole without augmentation - which was horrible for me as I could only take it for a few days without augmentation. Now I can take it for months without issue.

What happens when you take pramipexole (Mirapex is the brand name in the US)?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Nov 28, 2018 10:54 pm

Let me get back to you about the ferritin levels. Mirapex, pramipexole is successful to stop the symptoms about 25% of the time. But when it does help, I am almost always awakened from a decent sleep period with vomiting. So, it's a trade-off, most of the time.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Thu Nov 29, 2018 2:53 am

I don't have access anymore to my previous patient portal, as I have a different hematologist. As of last October, my ferritin was 178 ng/mL. The last infusion I had was probably last spring. I know the numbers have dropped since then, according to my doctor. I feel I need to clarify my medications. I had been on pramipexole for years. Symptoms got increasingly worse over the last few years. That's what prompted me to see someone at the Mayo Clinic. It appears there were augmentation problems quite a while back. So I'm being slowly weaned off pramipexole and onto Lyrica. I was given Lyrica in the past, but it was nowhere near the amount it should have been so it was ineffective. I hope that makes sense.

ViewsAskew
Moderator
Posts: 15604
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to group.

Postby ViewsAskew » Thu Nov 29, 2018 8:30 am

Yes, you had augmentation.

There is a LOT of info here to help you; it is mostly contained within other people's posts, so it means a bit of reading. As you cannot sleep, consider starting to go through older posts and see what you learn.

When you have augmented and you are stopping pramipexole, it is almost always MISERABLE. And, nothing will seem to work. There is a lot here on augmentation. I highly recommend reading anything you can find about it.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Thu Nov 29, 2018 8:32 am

Thank you. I will do that.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Thu Nov 29, 2018 2:08 pm

I would like to know if anyone else is taking Lyrica for RLS. I cannot find in any of the pages I have read, where it is helpful for RLS. Thank you!

ViewsAskew
Moderator
Posts: 15604
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to group.

Postby ViewsAskew » Sat Dec 01, 2018 1:39 am

It is very similar to gabapentin (a sort of similar formula) and there are many studies on it being effective. Most people do not use Lyrica because it is more expensive compared to generic gabapentin and isn't necessarily better.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Sat Dec 01, 2018 2:46 am

Thank you for replying. Gabapentin has not worked for me in the past. This is all new for me. Wellbutrin 3x a day. And 2 Lyrics about2-3 hours before bedtime. Last night, I was again, so desperate for the jerking to stop. I took an Ambien. Apparently, I had a bad reaction because my husband chased me around the house for hours, it was as if I was in a drunken stupor. Made no sense, speaking to inanimate objects, laying on couches amd rolling off. I'm sure it was some sort of psychotic episode brought on by the Ambien. It lasted about 6 hours, I'm told. He finally got me into bed where I slept all night. I don't recall ANY of it. My doctor refuses to give me anything for sleep so I am left to my own devices. I am considering marijuana, in spite of the fact that it's illegal here. I'm willing to take that chance. It was just totally out of control. I have no choice but to come up with something for making me sleep. At this point, I just don't care if it's something dangerous or not. I feel so hopeless with this.

Rustsmith
Moderator
Posts: 3890
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: New to group.

Postby Rustsmith » Sat Dec 01, 2018 3:45 am

One of the problems with gabapentin is that it isn't adsorbed into the blood stream very well. Some people simply cannot get enough for it to do any good. That is the reason why Horizant was developed and it is even more expensive than Lyrica.

As for your reaction to Ambien, that is one of the problems with it and is why the FDA required them to reduce to dose by 50% a couple of years ago. I took it for a while and then had an episode while traveling where I remember getting up and going downstairs at the hotel for breakfast. I remember sitting down and ordering tea and then the next thing I knew, I was walking down the hall toward my room. I ate because I wasn't hungry and I had a large breakfast charge to my room. That was the last time I took Ambien and I never will again. There are far too many stories like ours, but that did not turn out anywhere near was well.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Sat Dec 01, 2018 4:05 am

Wow. I just don't know how to get though this. And if I can't get through it, I don't know what I will do. I can't go on like this. Maybe I will cut the Ambien in half and see how it goes, if my legs won't let me sleep tonight.


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