Search found 532 matches

by stjohnh
Fri Jul 13, 2018 3:48 pm
Forum: Prescription Medications
Topic: Dipyridamole and cannabis interaction
Replies: 5
Views: 95

Re: Dipyridamole and cannabis interaction

Well, my initial thoughts are that cannabis has been used by many many people for many years and so far there doesn't seem to be any known increase in bleeding problems. That said, there is an unfortunate lack of scientific studies regarding this and many other questions that arise with using THC. T...
by stjohnh
Sat Jul 07, 2018 1:49 pm
Forum: General Topics: RLS/WED
Topic: saying hello
Replies: 3
Views: 110

Re: saying hello

I guess I'd echo your experience. I am functional most times, but rarely rested and sometimes still crappy. Not sure it gets better than that for some of us. I keep trying, though! This is exactly the symptom where dipyridamole seems to do the best for me. Maybe the next time you see Dr. B you migh...
by stjohnh
Thu Jun 28, 2018 12:10 am
Forum: Augmentation
Topic: Exchange mild discomfort now for longer time to reach augmentation?
Replies: 3
Views: 142

Re: Exchange mild discomfort now for longer time to reach augmentation?

Mike, I don't think your conclusions are entirely true. Yes, many people on dopamine agonists will have augmentation. But not all, and keeping dose low and ferritin high deceases that likelihood. The general recommendation for people on dopamine agonists alone is to take an amount that makes living ...
by stjohnh
Thu Jun 28, 2018 12:01 am
Forum: Just Joined?
Topic: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?
Replies: 4
Views: 153

Re: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Hmmm... the RLS advice is simple, get more IV iron. Seems to me that a hematologist is the way to go so that you can get it safely. The high erythropoitin is a problem, the hematologist should be able to help. Worst case I suppose is surgery to remove the nonfunctional (but still erythropoitin produ...
by stjohnh
Sun Jun 24, 2018 8:10 pm
Forum: Prescription Medications
Topic: Meds, ferritin, supplements, mthfr, etc
Replies: 5
Views: 165

Re: Meds, ferritin, supplements, mthfr, etc

Shari, I echo Steve's comments. With the obviously complex medical situation you have, including a large number of medications that can cause interactions and problems, I fully agree that seeing an RLS specialist is your first order of business. It certainly sounds like augmentation is a major probl...
by stjohnh
Thu Jun 21, 2018 10:42 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: CBD oil
Replies: 18
Views: 831

Re: CBD oil

I haven't used CBD oil, however I have used a high CBD edible which contains 50/50 CBD/THC. It did not help either my sleep or my urge to move. I subsequently found that regular edible marijuana with approximately 10 - 15 mg THC per dose helps my sleeping considerably, although it doesn't do much fo...
by stjohnh
Mon Jun 18, 2018 11:04 pm
Forum: Just Joined?
Topic: Hello from Schräg
Replies: 5
Views: 226

Re: Hello from Schräg

When I was withdrawing from mirapexin (a dopamine agonist like your neupro) my sleep consultant was adamant that I reduce gradually but like Holland says it did prolong the agony. Having said that some people have posted about dopamine agonist withdrawal syndrome which apparently can result from st...
by stjohnh
Sun Jun 17, 2018 3:09 pm
Forum: General Topics: RLS/WED
Topic: Riding the Big One (RLS 24/7, Hanging Ten)
Replies: 717
Views: 43934

Re: Riding the Big One (RLS 24/7, Hanging Ten)

I created this thread 4 years ago and I have reallly crashed and burned this time. ...It never gets better. Dang it I can never win, I feel so terrible. ... Kick me while I’m down son and and stab me in the heart, good lord this just isn’t fair at all. Not a happy Father’s Day ever again. EeFall, y...
by stjohnh
Sun Jun 17, 2018 3:01 pm
Forum: Prescription Medications
Topic: Gabapentin Side Effect
Replies: 8
Views: 689

Re: Gabapentin Side Effect

Veldon, some people are very sensitive to gabapentin and require much lower doses than usual. I take 100mg at 7:30pm and 50mg at 11. Any more and I feel like you do. It may be worthwhile to continue it at a much lower dose.
by stjohnh
Sun Jun 17, 2018 1:16 pm
Forum: Just Joined?
Topic: Hello from Schräg
Replies: 5
Views: 226

Re: Hello from Schräg

Brian, welcome to the RLS Foundation community. Sounds like you've already looked around on the board some and so you have probably found out that there are lots of folks that have had somewhat similar problems to yours, although I don't remember anyone with Huntington's disease. To answer your ques...
by stjohnh
Sat Jun 16, 2018 12:45 am
Forum: Prescription Medications
Topic: Desperate
Replies: 36
Views: 1077

Re: Desperate

Yay !!
by stjohnh
Sat Jun 09, 2018 12:28 am
Forum: Prescription Medications
Topic: Methadone was working, now it's not
Replies: 5
Views: 237

Re: Methadone was working, now it's not

Your next day sleepiness may have several causes, but the simplest to deal with is due to gabapentin. If caused by that, just reducing the dose may help. It is an odd medicine in that the effective dose varies wildly from person to person. I take 100mg at 7:30pm and 50mg at 11. Anything higher and I...
by stjohnh
Sat Jun 09, 2018 12:12 am
Forum: Just Joined?
Topic: Hello from Kentucky
Replies: 8
Views: 284

Re: Hello from Kentucky

Hi SleepyJudy, welcome !!! It sounds like you have relatively mild RLS. This means that you may be a good candidate for gabapentin or its relatives, Lyrica or Horizant. They don't cause augmentation. Be sure to get your ferritin checked if you haven't already. The dopamine agonists are indeed used t...
by stjohnh
Wed May 30, 2018 7:01 pm
Forum: Prescription Medications
Topic: Has anyone used Lyrica for RLS
Replies: 8
Views: 387

Re: Has anyone used Lyrica for RLS

drFred wrote:... I also have RLS for the past year or so (or possibly neuropathy?)....


it sounds like it's not entirely clear that you have RLS. Certainly if you don't have RLS, that would explain why the medications that you have tried in the past have not worked. What are your symptoms that suggest RLS?

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