Search found 594 matches

by stjohnh
Sun Dec 16, 2018 11:50 pm
Forum: Prescription Medications
Topic: What else should I be trying? I'm at a loss.
Replies: 11
Views: 58

Re: What else should I be trying? I'm at a loss.

That's good news about the opiods at least. I'll ask about that at my next appointment in January. As for my poor sleep...RLS makes it hard for me to get to sleep, usually requiring several tries of a couple hours. I stay asleep for a decent amount of time (usually 4-6 hours), and sometimes for muc...
by stjohnh
Sun Dec 16, 2018 5:37 pm
Forum: Prescription Medications
Topic: What else should I be trying? I'm at a loss.
Replies: 11
Views: 58

Re: What else should I be trying? I'm at a loss.

What happens if you take the MMJ and gabapentin on the same night? What dose of gabapentin are you taking? Have you considered kratom? Also people say poor sleep.. does that mean trouble falling asleep, staying asleep, early morning awakening, or feeling bad during the day? Treatment is different fo...
by stjohnh
Sat Dec 15, 2018 8:01 pm
Forum: Prescription Medications
Topic: What else should I be trying? I'm at a loss.
Replies: 11
Views: 58

Re: What else should I be trying? I'm at a loss.

Hmmm... So you are taking only Wellbutrin? Nothing for RLS? Do you have a strong urge to move your feet in the evening when sitting or lying down? If so, does the feeling go away when you get up and walk around? I'm a little confused. It would be rare for a person with fairly severe RLS to manage on...
by stjohnh
Sat Dec 15, 2018 4:59 pm
Forum: Prescription Medications
Topic: What else should I be trying? I'm at a loss.
Replies: 11
Views: 58

Re: What else should I be trying? I'm at a loss.

stockton2malone2, Welcome to the RLS community. You have come to the right place. There are lots of knowlegable freindly people here who have lots of experience with RLS problems. Unfortunately, your description of your problems is very common. What medicines are you currently taking and what doses?...
by stjohnh
Sat Dec 15, 2018 3:32 pm
Forum: Prescription Medications
Topic: Need some advice
Replies: 2
Views: 24

Re: Need some advice

Angeleyes, I'm glad you found us. RLS is a BIG problem and most people that don't have it just don't understand how devastating this disease is. You will find lots of help here from knowledgable, helpful compassionate people. I agree with everything sleepdancer discussed. It would help us give bette...
by stjohnh
Thu Dec 13, 2018 9:10 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 14
Views: 907

Re: Experience with Injectafer?

Last night, 7 days post initial infusion, it seemed like I was having less urge to move. I decided to omit my 6:30 dose of pramipexole (0.0625mg). Didn't work. By 9pm (my usual bed time) I was dancing in front of the the TV. I took my pramipexole, and by 10 I was able to fall asleep, though still wi...
by stjohnh
Mon Dec 10, 2018 11:45 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 14
Views: 907

Re: Experience with Injectafer?

Rats... Well I am now 4 1/2 days post first injection. Had one evening of reduced symptoms, but otherwise no change. Not surprising considering most people require a week to several weeks to have a response. My second infusion will be Thursday.
by stjohnh
Sat Dec 08, 2018 6:01 pm
Forum: Physical Treatments
Topic: Using Trail Camera to observe RLS
Replies: 3
Views: 44

Re: Using Trail Camera to observe RLS

Stainless, I spent quite a bit of time researching sleep cycles and their evaluation. I tried a bunch of devices. You might look here: http://bb.rls.org/viewtopic.php?f=5&t=9715#p85880 for more info. Bottom line, I could not find a reliable way to measure deep sleep that correlated with my sense...
by stjohnh
Fri Dec 07, 2018 4:43 pm
Forum: Just Joined?
Topic: New to this group
Replies: 6
Views: 112

Re: New to this group

Deb, Yes, currently it is recommended that the ferritin be above 75 or 100. Those that have ferritins less than that MAY respond to oral iron, though most don't. Again, the blood ferritin tells us next to nothing about brain iron. The reason IV Iron is not recommended for those with ferritin above 3...
by stjohnh
Fri Dec 07, 2018 2:36 pm
Forum: Just Joined?
Topic: New to this group
Replies: 6
Views: 112

Re: New to this group

Deb, Ferritin is an acute phase reactant. That means that it will be artificially elevated if there is any irritation/inflammation anywhere in the body. Current recommendations for IV Iron infusions are that it may be used for people with ferritin below 300, as long as other iron tests show no exces...
by stjohnh
Fri Dec 07, 2018 3:09 am
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 14
Views: 907

Re: Experience with Injectafer?

Well, I am now 24 hours post first Injectafer infusion (second due a week from today). So far, so good. Response to iron infusions is variable, some people having nearly immediate response, but most are delayed, some as long as 6 weeks before maximum effect (and of course about 50% have no response)...
by stjohnh
Thu Dec 06, 2018 11:21 pm
Forum: Just Joined?
Topic: New to this group
Replies: 6
Views: 112

Re: New to this group

Tad4k, Welcome, you have come to the right place. Steve gave you excellent advice. The problem I see is that you are augmenting, like Steve says, and likely it will be impossible for you to wait several months to see one of the Quality Care Clinic specialists. First, I would make the appointment lik...
by stjohnh
Sun Dec 02, 2018 3:10 pm
Forum: Just Joined?
Topic: New to group.
Replies: 22
Views: 218

Re: New to group.

Assuming you are in Minnesota, kratom is legal there, so you should be able to have it by Tuesday if you order today. I think it is the most effective non-prescription medication available for RLS urge-to-move symptoms. RLS is not on the Minnesota Medical Marijuana list, so you are out of luck there...
by stjohnh
Sun Dec 02, 2018 2:51 pm
Forum: Just Joined?
Topic: Introducing myself
Replies: 32
Views: 2202

Re: Introducing myself

Well, here's my theory of DA's and augmentation: As time goes on at a particular dose of a DA, the dopamine receptors get less and less responsive to the DA, requiring higher doses to achieve the same symptom control (the dose increase requirement is a well known aspect of DA treatment of RLS). At s...
by stjohnh
Fri Nov 30, 2018 10:55 pm
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 14
Views: 255

Re: Any luck with a sleep study?

2BassetMom wrote:I have had 2 sleep studies,.../ He also said that if the apnea is treated I could see a remarkable lessening of my rls. I am glad that I did the study.


Hmmm. I hope he is right, but I think there is not good scientific evidence that treating sleep apnea improves RLS.

Go to advanced search