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by stjohnh
Wed Jun 19, 2019 4:03 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 47
Views: 2117

Re: Experience with Injectafer?

Well, the wonderful result is starting to fade (as expected). For the last week I have been having mild urge to move symptoms nearly every afternoon. Additionally my sleep has been more erratic for the last 2-3 weeks. Still mild RLS, but distinctly worse than previously. I finished my second Injecta...
by stjohnh
Sat Jun 15, 2019 7:17 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Wahls diet for WED? Trying it.
Replies: 94
Views: 20634

Re: Wahls diet for WED? Trying it.

I don't know any more what is normal, am I normal or not? It is bound to be that my normal is not what should be my (non RLS) normal. Too many things to think of and remember in order to get through the day/night with a semblence of 'normality'. Maybe I 'act' normal in as far as possible. Dipyridam...
by stjohnh
Fri Jun 14, 2019 11:48 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Wahls diet for WED? Trying it.
Replies: 94
Views: 20634

Re: Wahls diet for WED? Trying it.

l Oh my, your experience is showing dipyridamole to be worth considering in more ways than one. ' Betty, my experience with dipyridamole was similar to leg's. Didn't help with urge to move. Helped some with sleep, but main effect for me was feeling "more normal" in the day time. It is har...
by stjohnh
Thu Jun 13, 2019 3:58 am
Forum: Prescription Medications
Topic: Weaning off medications
Replies: 24
Views: 310

Re: Weaning off medications

This is saying that’d the iron injection is safe I’d like you are under 300? Am I correct in reading this? Not exactly, but sort of. Well, this is where the lack of evidence, pro- and con- impacts the consensus recommendations. Remember this paper is written by a group of experts, supposedly evalua...
by stjohnh
Mon Jun 10, 2019 11:54 pm
Forum: Prescription Medications
Topic: Weaning off medications
Replies: 24
Views: 310

Re: Weaning off medications

...My ferritin level is within the acceptable range, so I don't know if I can get a doctor to approve an IV iron treatment, ... I don't think you quite understand the ferritin test. It ONLY indicates the amount of iron in the BLOOD. It does NOT show how much iron is in your brain. If you have RLS, ...
by stjohnh
Sun Jun 09, 2019 1:17 am
Forum: Just Joined?
Topic: New here, complicated story
Replies: 11
Views: 90

Re: New here, complicated story

... I'm thinking that they are neuropathy, but I don't know. Maybe you guys can help to clarify? Highly sensitive areas on my feet, to the point where any pressure at all - even the sheet touching them - is super uncomfortable; hot and swollen- feeling feet (like my toes are going to literally pop ...
by stjohnh
Sun Jun 09, 2019 1:13 am
Forum: Just Joined?
Topic: New here, complicated story
Replies: 11
Views: 90

Re: New here, complicated story

... * I am not eligible for any RLS meds that work neurologically as they could interfere with current psych meds (Lexapro, Lamictal, occasional low dose Klonapin) Iron has already been mentioned, but I will add to that: RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have th...
by stjohnh
Fri Jun 07, 2019 6:23 pm
Forum: Prescription Medications
Topic: Excellent article on opioids
Replies: 38
Views: 497

Re: Excellent article on opioids

Thank you Betty and Qyx! I don't know how to measure the kratom powder...ideas? I use this scale ($20) https://www.amazon.com/gp/product/B0012TDNAM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 But you probably don't really need it. 1/2 tsp kratom is 725mg one 00 size capsule of kratom is 360mg
by stjohnh
Wed Jun 05, 2019 1:46 pm
Forum: Augmentation
Topic: Augmentation on Neupro vs augmentation on pramixepole
Replies: 8
Views: 163

Re: Augmentation on Neupro vs augmentation on pramixepole

Bridgercan, Sounds like you have it spot on... Yes you are almost certainly augmenting. I augmented on pramipexole and switched for a month or two to Neupro and had to stop because of rashes. But augmentation on Neupro is very common, especially after augmenting on pramipexole. Coping... LOL, there ...
by stjohnh
Tue Jun 04, 2019 2:43 pm
Forum: Just Joined?
Topic: New Member
Replies: 12
Views: 233

Re: New Member

Thanks so much for your insight. One more question...if, after a couple of months of oral iron, my ferritin level increases to a good level, what would happen next in regards to my Pramipexole? Would I stop taking the Pramipexole immediately? Would I slowly cut it down? After getting your ferritin ...
by stjohnh
Tue Jun 04, 2019 12:15 pm
Forum: General Topics: RLS/WED
Topic: Pharmacology
Replies: 4
Views: 50

Re: Pharmacology

You are welcome. If you have other questions, ask away.
by stjohnh
Tue Jun 04, 2019 3:58 am
Forum: General Topics: RLS/WED
Topic: Pharmacology
Replies: 4
Views: 50

Re: Pharmacology

RLS ouch, RLS is not caused by a dopamine deficiency in the brain. Studies have shown variable results, but the main evidence indicates normal or high dopamine levels. The dopamine agonists improve symptoms by further stimulating already dysfunctional (because of iron->adenosine->dopamine receptor l...
by stjohnh
Sun Jun 02, 2019 2:22 pm
Forum: Prescription Medications
Topic: Weaning off medications
Replies: 24
Views: 310

Re: Weaning off medications

Has anyone been able to successfully wean themselves off dopamine agonist meds and treat their RLS symptoms with a more holistic, non-medication approach? Well, some of the answer depends on what you consider a "non-medication" approach. Your question also suggests that you may be just co...
by stjohnh
Fri May 31, 2019 1:29 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: New Kratom User - when to take
Replies: 16
Views: 229

Re: New Kratom User - when to take

5 to 10 grams a day would be a high dose for a person with RLS. I don't take it anymore, I don't need to after my iron infusions. When I was taking it I was taking it in conjunction with low doses of other medicines. I took 720 mg 90 minutes before bedtime and an additional 360 mg about midnight. If...
by stjohnh
Sun May 26, 2019 12:35 pm
Forum: Prescription Medications
Topic: Getting used to Lyrica
Replies: 7
Views: 93

Re: Getting used to Lyrica

... She actually said there is some evidence (which I have not seen) that people with a strong family history (my maternal grandmother, mother and sister) of RLS do not respond as well to an iron infusion. ... Interesting comment. Your family history is EXACTLY the same as mine, except that, in add...

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