Search found 1081 matches

by stjohnh
Sun Jul 12, 2020 12:53 am
Forum: Just Joined?
Topic: Hopeful RLS wife
Replies: 7
Views: 62

Re: Hopeful RLS wife

Dr. Buchfuhrer also sees patients at the Stanford Sleep center in Redwood City, if you live in northern California.
by stjohnh
Fri Jun 26, 2020 12:38 am
Forum: Prescription Medications
Topic: Stopping Gabapentin
Replies: 6
Views: 103

Re: Stopping Gabapentin

Likely your RLS was controlled mostly by the Keppra with some boost from the gabapentin. Anticonvulsants can help control RLS symptoms, but experience is limited. Several uses of this forum have had quite good results with some anticonvulsants, but they are people with severe RLS and usually have be...
by stjohnh
Fri Jun 26, 2020 12:28 am
Forum: General Topics: RLS
Topic: Dealing with doctor
Replies: 10
Views: 150

Re: Dealing with doctor

I mostly agree with Ann, except I wouldn't go back to Dr. G. He is clearly so full of himself he can't relate to patients, even though his advice sounded sort of OK (not good, but OK). It is difficult for many to get the opioids and/or good advice about opioids. I have been blessed not to have to ta...
by stjohnh
Wed Jun 24, 2020 7:51 pm
Forum: General Topics: RLS
Topic: Inconsistent Sleep Quality
Replies: 9
Views: 234

Re: Inconsistent Sleep Quality

Oozz, RLS actually has two main symptom groups, urge-to-move (restless legs) and sleep disorder. They appear to be mediated by different pathways (dopaminergic and glutamaturgic). In the mild phases of RLS the urge to move is the only apparent problem, and controlling urge-to-move usually results in...
by stjohnh
Fri Jun 19, 2020 1:40 pm
Forum: Augmentation
Topic: tomorrow I am going to vent about rls
Replies: 4
Views: 206

Re: tomorrow I am going to vent about rls

I agree with QxY. You are augmenting on Mirapex, meaning that you need to get off it, a difficult problem in itself. Additionally, kratom is very likely to help. Medical marijuana may help sleep once you get the urge to move under control. Order some kratom today, with rush delivery, you should be a...
by stjohnh
Tue Jun 16, 2020 2:08 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 93
Views: 6607

Re: Experience with Injectafer?

I see - the sources I used said (or the way I took notes from them said) that iron/TIBC is transferrin sat and that iron/transferrin is transferrin index. But anyway I know now that your 33% was measuring the same thing as my 44 and 52%. I fasted for over 12 hours and stopped oral iron for 3 days b...
by stjohnh
Mon Jun 15, 2020 3:37 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 93
Views: 6607

Re: Experience with Injectafer?

Holland, what do you mean by iron saturation? I think I have a handle on transferrin saturation, TIBC & UIBC, iron concentration, & transferrin index, but I thought iron sat was just another term for transferrin sat. What was your sat. when your ferritin was 452? Beth, iron sat=iron/TIBC (Where TIB...
by stjohnh
Wed Jun 10, 2020 10:34 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 93
Views: 6607

Re: Experience with Injectafer?

Well, I just had the first of my 3rd set of IV Injectafer Iron infusions, 2nd of the set is next week. Injectafer is given as two infusions, one week apart. RLS symptoms are coming back, but still mild. Interestingly, my ferritin a week or so ago was 452, I was afraid the hematologist would cancel m...
by stjohnh
Sat May 30, 2020 3:33 pm
Forum: General Topics: RLS
Topic: The Relationship Between Inflammation and RLS
Replies: 19
Views: 503

Re: The Relationship Between Inflammation and RLS

Wow, Thanks for the very interesting and well researched discussion. It will be interesting to see how much future research supports this idea.
by stjohnh
Wed May 27, 2020 12:13 am
Forum: Just Joined?
Topic: Sheets
Replies: 3
Views: 67

Welcome to the group Squirmy. Generally 100% cotton pills less than cotton/polyester blends or 100% polyester.
by stjohnh
Wed May 13, 2020 2:28 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Oral Iron instead of meds?
Replies: 6
Views: 222

Re: Oral Iron instead of meds?

Although disappointing that the success rate of iron is not very high. This seems counterintuitive if BID is indeed at the root. The reason for the less than 100% response to IV Iron is unknown. The most evidence points to the problem causing low brain iron is inadequate iron transport across the b...
by stjohnh
Tue May 12, 2020 7:15 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Oral Iron instead of meds?
Replies: 6
Views: 222

Re: Oral Iron instead of meds?

Bill, The usual for IV iron is to continue regular meds, get IV iron, then a few weeks later, attempt to get off other RLS meds. That is what happened to me, I have had two rounds of IV Iron, and am about due for my next one. The IV iron allows me to be off other RLS meds for a while. I am currently...
by stjohnh
Sun May 10, 2020 12:42 am
Forum: Just Joined?
Topic: New guy with questions, needing help
Replies: 3
Views: 138

Re: New guy with questions, needing help

can someone point me in a direction to pursue after I get off the med and return to my baseline rls? It appears that iron might be of benefit? What tests should I ask my doctor for to get a good idea on iron/ferritin? RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their...
by stjohnh
Sat May 09, 2020 3:37 pm
Forum: Just Joined?
Topic: New to Discussion Board
Replies: 6
Views: 179

Re: New to Discussion Board

Well, my neurologist has me on Gabapentin in two divided doses in the evening, and the sleep doctor put me on an iron supplement, because my ferritin was low. Welcome bklyn62. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even elimina...
by stjohnh
Wed May 06, 2020 2:02 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Medical Marijuana in non-recreational US states
Replies: 1
Views: 132

Re: Medical Marijuana in non-recreational US states

Well, I live in California, and recreational has only been legal a few months. I got medical marijuana here several years ago, on the basis of RLS and insomnia. However, California's medical marijuana law was very vague about the requirements and LOTS of people without significant medical problems g...