John Hopkins Glutamate Study

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

Re: John Hopkins Glutamate Study

Post by ViewsAskew »

I know it's been discussed here - I don't have time to do a search t the moment. It might take you a few minutes - search on ferritin and look for a post by badnights - I'm pretty sure it was she who posted 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.

skn0412
Posts: 51
Joined: Thu Sep 18, 2008 10:27 pm
Location: Seneca, South Carolina

Re: John Hopkins Glutamate Study

Post by skn0412 »

Thank You !! I found it !!!
Sue

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: John Hopkins Glutamate Study

Post by badnights »

Thank you for going through that torture! I love those guys - HEY did Dr. Allen mention the card we sent him?

And I am sending you my most powerful hopes that the lump is insignificant and your WED is controlled by the gabapentin. At least you're in good hands, with that group at your back!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

lynneat
Posts: 8
Joined: Fri Apr 11, 2014 6:47 pm

Re: John Hopkins Glutamate Study

Post by lynneat »

I'm stuck on clonazepam 1/2 mg. I came off 1/2 and had symptoms (withdrawal) for 4 months! Same for my daughter...awful time so we are stuck .... how did they get you off of that drug? I did cutting over a period of 2 weeks to come off of 1/2 mg. With her...her stupid nurse ran out of it and didn't tell anyone or the doctor...we decided to put her back on 1/2 and leave it alone. She was suffering too much. That worked for her. Now we are stuck. Again how did JH get you off of it? There's a titration method (water titration) clinic in England...
My husband has movements in sleep and apnea. I'm here looking around trying to get help. Ohio docs haven't done anything for him that works....

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Post by Joanie60 »

skn0412 wrote:Hello !!!
. On the other side of this coin is that my MRI was abnormal :( ....... the Radiologist found a 3mm bulge in one of my arteries, so I have to have a MRI with contrast immediately when I get home. Scarey ?? YES indeed !!! It could be something or it could be nothing; so....yeah, I'll take all your Prayers that it is nothing, won't be shy about asking for that. This will be night two on the Neurontin....I think I slept six hours last night out of shear exhaustion because I did not have a good night Thursday at the sleep lab.

So the saga continues......home tomorrow !!! Thanks goodness.....I just want to get home to my husband !!!

Hugs !!!


Sue~ any update on your repeated MRI? Neurontin still working for you? Thanks again for helping ALL of us :-)

skn0412
Posts: 51
Joined: Thu Sep 18, 2008 10:27 pm
Location: Seneca, South Carolina

Re: John Hopkins Glutamate Study

Post by skn0412 »

Hey Joanie......sorry its taken so long to respond to your kind inquiry....thanks !!!!! My repeat MRI came out normal, thank goodness !!! The Neurontin is still working great for me, I am taking 300mg around 4pm, then 300mg at 8pm. However I am having trouble staying asleep, waking up twice a night. I have tried Melatonin, that didn't work; then my doc put me on Ambien, and even that didn't work !!! Dr. Earley said that my sleep pattern while on Clonopin and Mirapex was controlled by the medication; now that I am not on those meds, my body is reverting to its "normal" sleep pattern, and its not the pattern that I am "forcing" it into with medication. So, for the next two weeks he wants me to go to bed around 10 - 10:30 and get up at 6. Which is difficult for me because my hubby gets up for work at 4:15 and I like to get up with him .... so I have been going to bed around 9:30 - 10:00 and getting up at 4:15; seems to be working. Dr. Earley said I may not require 8 hours sleep, I may only need 6 or 7 !! We will see how this new sleep pattern goes and if it doesn't help it will be interesting what Dr. Earley's plan of action will be..... I full night sleep without waking up would be wonderful (p.s.: I'm not waking because I have to pee, or my legs....I wake up, and I'm ready to be up !! I have to force myself to go back to bed....eeekkk !!!)

Hugs !!!
Sue
Sue

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Post by Joanie60 »

I am so so so glad your MRI came back normal!!

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: John Hopkins Glutamate Study

Post by ViewsAskew »

Great news - on all fronts!
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.

pjmccoy1
Posts: 80
Joined: Wed Sep 11, 2013 7:00 pm
Location: Below the Mason Dixon Line USA

Re: John Hopkins Glutamate Study

Post by pjmccoy1 »

Sue: Thank you for participating in this study. I do not know how you did this. Blessings to you and yours. I was supposed to participate in a clinical trial with Vanderbilt but I was failing Horizant, depression issues and been through hell and back ever since. Anyhow, is Neurontin only Rx you're taking for the RLS now?
PJ, Heaven Bound

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: John Hopkins Glutamate Study

Post by Rustsmith »

I just went through the interview process for the study, but Dr Allen decided that my situation was complex to be included. That is good from the standpoint that I don't have to get off of my DA and gabapentin, but I was really looking forward to being able to participate and contribute to the results.

However, during the interviews they told me that they are nearing the end of the study and hope to be finished by next March. I hope that means that there should be some published results by this time next year. :D
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

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