Search found 66 matches

by fuz_mind
Sat Aug 12, 2017 9:57 am
Forum: Prescription Medications
Topic: Infusion Update
Replies: 84
Views: 12250

Re: Infusion Update

To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200. hello viewsakew, i don't think I really understand the above very well, do you min...
by fuz_mind
Sat Aug 12, 2017 9:53 am
Forum: Just Joined?
Topic: RLS only in feet?
Replies: 13
Views: 2054

Re: RLS only in feet?

Dr B checked all four, too. Here is a quote that might help: "All patients with symptoms of restless legs syndrome (RLS) should be tested for iron deficiency. [3, 4] At a minimum, a ferritin level should be obtained. A complete iron panel, including iron levels, ferritin, transferrin saturation...
by fuz_mind
Fri Aug 11, 2017 4:09 am
Forum: Prescription Medications
Topic: Infusion Update
Replies: 84
Views: 12250

Re: Infusion Update

[quote="ViewsAskew"] To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200. hello viewsakew, i don't think I really understand t...
by fuz_mind
Fri Aug 11, 2017 3:43 am
Forum: Just Joined?
Topic: RLS only in feet?
Replies: 13
Views: 2054

Re: RLS only in feet?

Yes, Yes, Yes, It's the Ferritin test that is important. Ferritin isn’t the same thing as iron in your body. Instead, ferritin is a protein that stores iron, releasing it when your body needs it. can I check if any one (or your doctors) uses more than just ferritin as a guide? I was watching the vi...
by fuz_mind
Fri Aug 11, 2017 3:39 am
Forum: Prescription Medications
Topic: comorbid migraines
Replies: 11
Views: 1071

Re: comorbid migraines

Fuz, what happened with the Propranolol? I was reviewing some of these topics and noticed that you were prescribed Propranolol, it is known to sometimes worsen RLS, what happened when you took it?[/quote] hi! thanks for the concern :) i decided agst it so I'm not on anything for the migraines. rough...
by fuz_mind
Tue Jul 04, 2017 6:07 am
Forum: Prescription Medications
Topic: comorbid migraines
Replies: 11
Views: 1071

Re: comorbid migraines

[quote="Rustsmith"]fuz_mind, before I started using gabapentin for my migraines, my doctors had me on a variety of other drugs. The first one was topiramate. It worked fairly well and I was on it for about 4 yrs. Early on, my doctor had me on such a large dose that I realized that it had c...
by fuz_mind
Tue Jul 04, 2017 5:58 am
Forum: Prescription Medications
Topic: Is anyone else still on clonazepam?
Replies: 42
Views: 5300

Re: Is anyone else still on clonazepam?

So Fuz, your rls was bad, you took clonazepam for a while, things got better and you got off it? What do you do now for relief? Leggo, I would explore all other avenues before your body gets too dependent on clonazepam. Then taper off very slowly. I swore I would never go back after what it took to...
by fuz_mind
Sun Jul 02, 2017 12:55 am
Forum: Prescription Medications
Topic: comorbid migraines
Replies: 11
Views: 1071

Re: comorbid migraines

hopefully i get more replies! i had a bad reaction to a low dose of gabapetin so that's out for me; my neuro initially suggested amitryline which I declined because it might make the rls worse; he then suggested beta blocker (which will make me more tired as a side effect!) ...... so I'm stucked.......
by fuz_mind
Sat Jul 01, 2017 3:52 pm
Forum: Prescription Medications
Topic: comorbid migraines
Replies: 11
Views: 1071

comorbid migraines

hi just wondering if there are people out there who have comorbid migraines and what medications have you guys tried that doesn't worsen or maybe even helps with the rls?
by fuz_mind
Sat Jul 01, 2017 3:39 pm
Forum: Prescription Medications
Topic: Is anyone else still on clonazepam?
Replies: 42
Views: 5300

Re: Is anyone else still on clonazepam?

leggo_my_legs wrote:I just started clonazepam. It seems to be providing some marginal benefit but not considering it to be a long term solution.


yes because of addictive effect; but it did help quite a bit when my rls was bad

hang in there:)
by fuz_mind
Sat Jul 01, 2017 2:52 pm
Forum: General Topics: RLS/WED
Topic: What is "Good Sleep Hygiene" RLS Style?
Replies: 13
Views: 2078

Re: What is "Good Sleep Hygiene" RLS Style?

before RLS, I have always kept to standard sleep hygiene, which has generally been helpful for my sleep post rls, i have generally kept to the standard sleeping and waking time, but I have placed more emphasis on my pre-sleep routine so that I am sleepy and physically comfortable (ie no pain) when I...
by fuz_mind
Sat Jul 01, 2017 2:12 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 29
Views: 5595

Re: Rate of Ferritin Decline

peanut1 wrote:Thank you! I have a lot of hope for managing these symptoms better IF I can get the transfusion.


keep fingers crossed!
by fuz_mind
Sat Jul 01, 2017 2:07 pm
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 64
Views: 11585

Re: tapering off ropinirole

ViewsAskew-- Fuz_Mind I haven't come to the discussion boards for a while because I was working out what to do and my Neurologist made her decision : I was augmenting pretty bad on Ropinirole which I took for maybe 8-9 months (total of 1mg per PM, cut into pieces to spread through early evening). M...
by fuz_mind
Sat Jul 01, 2017 2:03 pm
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 64
Views: 11585

Re: tapering off ropinirole

i think i might have been too optimistic about my neuro. he sent me the 2016 AAN guidelines for my "reading pleasure" - he clearly didn't agree with ropinirole 1mg at max dose...... Then perhaps you could give him Buchfuhrer's 2012 paper for HIS reading pleasure. Written by someone who tr...
by fuz_mind
Mon Jun 26, 2017 10:46 am
Forum: Prescription Medications
Topic: tapering off ropinirole
Replies: 64
Views: 11585

Re: tapering off ropinirole

neuro back from leave i stubbornly tapered down to 1mg yesterday although I don't think i was doing very well in the last month pain surprisingly got better 2 -3 weeks after cutting down to 1.25mg; but my mood has crashed in a huge way Did anyone have problems with mood as part of their withdrawal w...

Go to advanced search