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by stjohnh
Thu Mar 21, 2019 3:38 am
Forum: General Topics: RLS/WED
Topic: Anxious
Replies: 4
Views: 33

Re: Anxious

EeFall, It sounds like you are having panic attacks. AFAIK this is not caused by RLS, but lack of sleep might make it worse. I don't know if Suboxone can cause panic attacks. Best to see your doc and ask if this might be panic attacks. I know you had iron infusions a few years ago, but the treatment...
by stjohnh
Mon Mar 18, 2019 4:15 am
Forum: Physical Treatments
Topic: Orgasm as treatment and/or cause
Replies: 11
Views: 144

Re: Orgasm as treatment and/or cause

Thanks to both of you, that's very helpful. I might ask my doctor to do a serum iron panel test. Maybe I'm one of the lucky ones who can benefit from some kind of iron supplementation. If you have RLS, you almost certainly have low brain iron (BID, Brain Iron Deficiency). The blood test for iron is...
by stjohnh
Mon Mar 18, 2019 3:59 am
Forum: Physical Treatments
Topic: Orgasm as treatment and/or cause
Replies: 11
Views: 144

Re: Orgasm as treatment and/or cause

I don't think iron decifiency fully explains all cases, or wouldn't red meat / iron supplements be a reliable cure? ... Would you mind explaining a bit why external dopamine sources (such as heroine or prescription drugs) can give rise to RLS, but an internal source can't? Iron supplements and red ...
by stjohnh
Sun Mar 17, 2019 3:13 pm
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: restless legs caused by mental health medications
Replies: 4
Views: 1452

Re: restless legs caused by mental health medications

My wife has restless legs caused by anti-psychotics. .... Her Olanzapine was then tapered slowly to 10mg & the Clonazepam was tapered to 1.5 mg per day. Her problems are totally gone now. ... Tom, thanks for the follow-up. It is great to hear your wife's suffering has improved. Have the medicat...
by stjohnh
Sun Mar 17, 2019 2:48 pm
Forum: Physical Treatments
Topic: Orgasm as treatment and/or cause
Replies: 11
Views: 144

Re: Orgasm as treatment and/or cause

jej345: Welcome to the RLS community, you will find lots of helful, compassionate infromation from folks who really understand how dreadful this disease can be. I think this is the most unusual first post I have seen from a new member. Congratulations. :D ... Why is orgasm never discussed as a treat...
by stjohnh
Thu Mar 14, 2019 3:35 pm
Forum: Prescription Medications
Topic: Gabapenten used thru the night
Replies: 9
Views: 116

Re: Gabapenten used thru the night

Well, the problem with gabapentin is that different people metabolize gabapentin much faster or slower than others. Most drugs have a fairly predictable metabolism rate. Not so with gabapentin. I am very sensitive to it. 150 mg for me is a tolerable dose, 300 mg turns me into a zombie. There are fol...
by stjohnh
Wed Mar 13, 2019 3:23 pm
Forum: Augmentation
Topic: Augmentation again (of course)
Replies: 30
Views: 318

Re: Augmentation again (of course)

I'm back again as well, due to augmentation. Last time i reduced my pramipaxle to .5 mg, after an agonizing period of tapering. Each drop in dose resulted in horrible symptoms. Finally i gave up and stayed in my new low dose. Lately I've been having symptom breakthrough. Then, two nights ago, i ina...
by stjohnh
Wed Mar 13, 2019 3:13 pm
Forum: Prescription Medications
Topic: Gabapentin withdraw symptoms
Replies: 9
Views: 84

Re: Gabapentin withdraw symptoms

I haven't had gabapentin withdrawal symptoms (that I know of).
by stjohnh
Wed Mar 13, 2019 2:59 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Nonmedication strategies for RLS by Shalini Paruthi,MD
Replies: 3
Views: 61

Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Paulande, Welcome to the RLS community. You will find lots of helpful, empathetic people here who truly understand how life-altering this miserable disease can be. I'm a 71 yo guy who first had RLS symptoms in my 30s and started needing medication in my 60s. I, too have an understanding doc who will...
by stjohnh
Tue Mar 12, 2019 2:59 pm
Forum: Prescription Medications
Topic: Gabapenten used thru the night
Replies: 9
Views: 116

Re: Gabapenten used thru the night

I am sensitive to gabapentin, but it clearly helped me sleep. I took 100mg 90 min before bed (along w other meds for RLS) and another 50 mg when I got up to pee about 2-3 hrs after bedtime. Worked better than taking full dose before bed.
by stjohnh
Sun Mar 10, 2019 7:41 pm
Forum: Prescription Medications
Topic: Lyrica Cocktail
Replies: 4
Views: 76

Re: Lyrica Cocktail

Stainless wrote:I started Lyrica four weeks ago ...

This has been the best four weeks for my rls in decades. No daytime rls, only a little an hour before bedtime and fairly minimal side effects...


Yay!!
by stjohnh
Sat Mar 09, 2019 8:15 pm
Forum: Physical Treatments
Topic: Suddenly got really bad
Replies: 6
Views: 130

Re: Suddenly got really bad

Brynmr, I hope this isn't a trend as well. I found that if I miss the usual timing of my meds, that it does indeed take much more to control the worsening of RLS symptoms than if I get my meds at the usual time.
by stjohnh
Sat Mar 09, 2019 5:48 pm
Forum: Augmentation
Topic: Augmentation again (of course)
Replies: 30
Views: 318

Re: Augmentation again (of course)

I did have my ferritin tested I cannot find the sheet which explains the outcome However she did say it was Good Marie, RLS is due to low brain iron (Brain Iron Deficiency, BID). There is a protective barrier between the brain and the blood called the Blood Brain Barrier. It's purpose is to keep ba...
by stjohnh
Sat Mar 09, 2019 3:43 am
Forum: Augmentation
Topic: Augmentation again (of course)
Replies: 30
Views: 318

Re: Augmentation again (of course)

Marie, Ropinirole at 2mg a day is a very high dose. Current recommendations are that for RLS the max is only 0.5mg. Also, don't take the Levodopa/Carbidopa, bad news in this situation. You say you are doing ok, but that is hard to believe on only 2.5 hours sleep a night. While it is true that some p...
by stjohnh
Fri Mar 08, 2019 1:53 pm
Forum: Prescription Medications
Topic: Cortisone Injection
Replies: 4
Views: 71

Re: Cortisone Injection

Well, I had a spinal cyst pressing on one of my spinal nerves causing awful leg pain. I was on opioids for several months while a series of doctors misdiagnosed my condition. The opioids worked well on my RLS (not so well on my leg pain), so my RLS did not bother me during that time. As part of atte...

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