John Hopkins Glutamate Study

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
EeFall
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Location: USA

Re: John Hopkins Glutamate Study

Postby EeFall » Tue Feb 11, 2014 1:03 pm

QyX wrote:From what I can see here in general is that opioids alone often don't solve the problem. Many WED/RLS symptoms may go away but falling asleep stays a big problem and I my opinion is that this issue needs more attention by the Docs and the scientific literature.


I agree there needs to be more known about the sleeping part not just about how to stop the RLS symptoms, It happened to me again this evening (morning). I fell asleep around 2 am and woke just a bit ago (4:20 am) sitting on the couch. There was no way I would have attempted to go to bed just before falling asleep because my legs wanted to move and I woke up because of the same reason. The only thing I can do is bring my VPAP machine out here to the living room and wear the mask. I almost did it tonight but thought I would make it to bed.

As far as being able to work I think it has to do with the hyperarousal mostly, I feel like I need to do something. Around the house staying home the past month to get on and off the prescriptions I have had several projects, two of them are caulking all the ceiling cracks (done) and caulking all the kickboards at the tops between the kickboards and the walls.

Polar Bear
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Re: John Hopkins Glutamate Study

Postby Polar Bear » Tue Feb 11, 2014 4:36 pm

You are now experienced in the art of caulking. Bonus is that this has probably one of the wee jobs that's been hanging around waiting to be done - now it can be ticked off the list.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: John Hopkins Glutamate Study

Postby EeFall » Wed Feb 12, 2014 8:51 am

Polar Bear wrote:You are now experienced in the art of caulking. Bonus is that this has probably one of the wee jobs that's been hanging around waiting to be done - now it can be ticked off the list.


Yes, I actually do have a list on the fridge and did tick off the ceiling caulking, another day or two and kick boards will been finished also.

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

Re: John Hopkins Glutamate Study

Postby skn0412 » Thu Feb 13, 2014 4:35 pm

I made it to John Hopkins on Monday night before the storm hit home and now we are having a Nor easter in Baltimore !! That's okay....I'm here. I have fallen in love........with Dr. Earley !!! He is amazing !!! OMG he is so friekin' smart; the worst part was that I was so damn tired I only remember half the stuff we talked about. He is putting me on Neurontin to start and we will see how that goes (all comments welcome of your experiences on that medication!!) he said I should know within a couple days if that is going to work for me; then we will move to the Opiates, and he would consider me for Methodone. So I like that, we have a Plan A, B & C !!! The Study thus far is going well, although yesterday I had a SIT test, that I didn't know was part of the Study. Well........that was certainly interesting. By the end of the hour I was in a full fledged anxiety attack.....no joke !!! There are two more SIT tests today, last night I told them no way, I will not do them again and they told me to just complete as much of the hour that I could tolerate, even if its only ten minutes (big sigh of relief!!!)..... then more sleep study tonight and tomorrow MRI, etc. I hope the weather calms down as the University was closed today and most people did not come to work !!! Hopefully we can get these test done tomorrow. Otherwise I'm doing okay, glad my best friend is with me and I have the support of my RLS buddies and lots of support from family !!!

Hugs !!!!!
Sue

Polar Bear
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Re: John Hopkins Glutamate Study

Postby Polar Bear » Thu Feb 13, 2014 8:07 pm

Brilliant - I wish you all good things.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Postby Joanie60 » Thu Feb 13, 2014 8:29 pm

Congrats! Glad you made it before the storm. I participated in the SIT test and had to take them at their word...just do it until you can't. The techs are so understanding. I, unfortunately, did not have a good experience with Neurontin. I gained one pound a day for the eight days I was on it. Worth trying, I sure hope you don't have that experience, but keep your eyes open for it. It did not increase my appetite, I'm not sure what happened. The opiates work for me, but I know Dr Gulyani (an associate of Dr Allen/Early) likes to use them in combination. Best of luck Sue, we are all rooting for you!!!

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

Re: John Hopkins Glutamate Study

Postby skn0412 » Thu Feb 13, 2014 11:48 pm

Thanks for that heads up about the weight gain !! I just lost 11 pounds weaning from the Clonopin !! I also forgot to mention that Dr. Earley wants me to have an IV Iron Infusion .... anyone have an experience with that ??? My SIT test tonight went much better than last night .... one more to go tonight, we'll see how it goes now that its getting closer to bedtime !!!
Sue

ViewsAskew
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Re: John Hopkins Glutamate Study

Postby ViewsAskew » Thu Feb 13, 2014 11:53 pm

I lost about 40 pounds weaning off clonazepam! Too bad I gained it back over time - sigh. But, at least not more than before, lol.

Several people have had an infusion here - some with good results, some with no results. No one has had difficulty that I know of.
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.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: John Hopkins Glutamate Study

Postby doety » Fri Feb 14, 2014 12:05 am

I guess I really didn't understand how that worked. So they're just going through the drugs again? Haven't we already all done that? (sorry...feeling a bit sour.)
I tried Neurontin and it seemed to make me dizzy, so I quit.
Are they talking at all about the Glutamate study?
Thank you again for participating.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Postby Joanie60 » Fri Feb 14, 2014 1:06 am

Sue~ I'm weighing in on the iron infusion!!

My ferritan (sp?) levels were about 12 when I started this journey. Got them up to about 23 with oral iron supplements. Had the IV iron infusion using an excellent fairly new protocol per Hopkins (can message you Doc name, but again, he is in the Baltimore area). This new protocol takes about 20 minutes. My brother has had the old protocol many times which takes most of a day and can be dangerous due to anaphylactic shock or something. Anyway, the Hopkins protocol, as i call it, is side-effect free, brought my ferritan levels to over 150 (yay!!) and solved my WED problem for exactly one night. Can you believe it?!?!? But because it was so easy, and the doc was so fascinated with the ferritan/WED connection, I highly recommend trying it. Many docs try to steer you away from it because of the potential side effects from the all-day protocol of infusion but if you can find someone who does the quick version, go for it!! I was convinced my problem was low ferritan, only wish I had been right :-).

It does help me "justify" using Opiates in my brain. I really do believe I have tried everything else. I have also been on a steady dosage of Percocet for over a year and a half, so my fears of drug seeking behavior, or addiction, or augmentation, are all for naught.

The other benefit of the infusion is that I can donate blood more easily now. I wait 16 weeks between donations instead of the minimum of 8 weeks, but have not been anemic since the infusion.

I cannot WAIT to read the results of the Glutamate study!!! Thanks again, Sue, from the bottom of my heart!!

Joanie

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

Re: John Hopkins Glutamate Study

Postby skn0412 » Sun Feb 16, 2014 1:46 am

Hello !!!
Tonight is my last night in Baltimore !!! The last SIT test went fine ... I had a little trouble at the end, but I pushed through !!! Yesterday I had the MRI, and that was a tough one, an hour just laying there; after it was over I jumped off the table and went out into the room where Dr. Earley and Allen were and I was in a friekin' spaz cause my legs and arms were going crazy for the last fifteen minutes !! I said to them I didn't know what was worse the SIT test or that MRI ..... they laughed, but on the other hand the Coordinator said they were really concerned and felt so bad because I was so uncomfortable. She said Dr. Allen said to the Tech "can't you speed this thing up? She is suffering in there!" They are so in-tune to this disease it just blows my mind !!! And Dr. Allen was very inquisitive about my arms. 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

ViewsAskew
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Re: John Hopkins Glutamate Study

Postby ViewsAskew » Sun Feb 16, 2014 4:49 am

Congrats, Sue! Almost over. I can't imagine how disconcerting the MRI was. Hopefully, as you said, it's nothing. If it's something, hopefully it's resolvable.

Hope the trip home goes well.
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.

cornelia

Re: John Hopkins Glutamate Study

Postby cornelia » Sun Feb 16, 2014 9:59 am

So glad it's over now for you and I wish you a burning hot welcome home from your husband. I hope this bulge doesn't mean something is really wrong.

Thanks from the bottom of my heart for waht you have done for science (and us).
Corrie

Polar Bear
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Re: John Hopkins Glutamate Study

Postby Polar Bear » Sun Feb 16, 2014 9:51 pm

Well done for what you have been through these last few days.
And lots of best wishes with regard to your MRI .
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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

Re: John Hopkins Glutamate Study

Postby skn0412 » Mon Feb 17, 2014 5:25 am

Thank You Ladies !!!!!!

Hey, do any of you know where I can find documentation/justification, etc. where it addresses Ferritin Levels for RLS ? I want to give it to my Primary Care Doc.

Thanks !!
Sue


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