Lately I haven’t been able to sleep well and I think it’s causing my RLS to intensify. I feel pain in my arms legs and sides next to my armpits.
I am in Wheaton (next to Chicago) IL and need to see a doctor ASAP.
Who can I consult? Also since my insurance doesn’t cover pre-existing conditions, is there any way I can get the doctor to consider my situation?
Dr. Mari Viola-Saltzman - NorthShore University - Chicago, IL (847) 570-2570
Called them. Next appointment wont be available till Feb ‘25!
Ouch!
I have a Script for pregabalin 75mg. I can have that sent to the US (hopefully) is it as good as gabapentin? Does it help with insomnia?
It is basically the same as gabapentin except you don't need to divide the doses. 75 mg is the equivalent of 450 mg of gabapentin. It helps at least some with insomnia.
I currently have a script for 225 pregabalin. I started at a much lower dose but have been on this strength for about a year. Initially took gabapentin, but frequently had difficulty dividing the dose, but both have successfully treating RLS. The pregabalin is a scheduled prescription, I think a 4 or 5. For me, it has helped with sleep. I’ve also gained around 20 lbs.
That’s an alarming gain in weight! Is it completely attributable to the drug? Did you want to eat more or be less active while on it or is it that nothing really changed and you automatically gained weight on it?
One is more likely to gain weight on pregabalin than gabapentin but most don't.
You might want to try Dr. Brandon Barton (312) 563-2900 in Chicago. He is listed on the rls.org site. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who have applied to be on the list, they still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. If it is a person that submitted the name they might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and up-to-date is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.
If you see him, please let me know how it went.
There are others close by or elsewhere in Illinois I can give you if he doesn't say he is familiar with the Mayo Algorithm
One more question about Pregabalin, can it be taken on an on need basis, i.e. take it for a few weeks, catch some zzz and then taper off and see if there is remission? Or is it that once you start, its' better to stay on it forever?
As far as I’m aware it would be ok to take as you suggested. I was advised the the effects build up over days and possibly small numbers of weeks so taking it erratically off and on each day would be less effective, but several weeks at a time should be long enough for the effects and benefits to be felt. While pregabalin doesn’t have the same withdrawal issues as a dopamine agonist, the normal advice is to reduce slowly and steadily. I personally took a few months to come off 300mg a day which was fine and probably over cautious.
There won't be remission. RLS doesn't go away by itself.
What I’m hoping is that at least thus acute rise in symptoms brought on by stress and sleep deprivation would be somewhat mitigated and then I could come off it when things are better. Right now in addition to the pain I get these jerks in my left leg when I’m about to fall asleep. Like hypnic jerks.
At just a starting dose of 75 mg you would basically be stopping taking it and you would need to reduce by 25 mg every 2 weeks to avoid withdrawal effects. If 75 mg works, which at a starting dose is unlikely too then you could try reducing it to 50 mg to see if that works.
As far as a hypnic jerk, that could be caused by stress or magnesium or calcium.
I meant to say deficiencies in magnesium or calcium.
Pregabalin is best taken continuously. Going on and off produces a kindling effect. It's fine to come off it slowly but as a general rule, you should aim for consistency in dosing
How long does it remain effective before requiring a dose increase? My concern is that I’m 30 and I don’t wanna use up all the ammo against RLS at this age.
Normally you would wait 3 weeks for it to be fully effective and then increase by 25 mg every couple of days until you find the dose that controls your symptoms. The usual effective dose according to the Mayo Clinic Updated Algorithm on RLS is 200 to 300 mg. Once you find the dose that controls your symptoms it will take a number of years before you need to add another 25 mg.
Ok that sounds a bit encouraging. So you could continue doing that for relief for about say 10 - 15 years give or take?
If you need it and it works you would take it for the rest of your life.
It's all about finding the right dose. You shouldn't have to continually increase it. I was on a dose of 300mg for 7 or 8 years. I hear you re not wanting to use up all the ammo. That's why it's important to look at lifestyle factors as I mentioned in a previous reply to you.
I dont drink alcohol, coffee, tea etc. My only sins are flexible bedtime and sedentary lifestyle which I am fixing. I have gotten myself into a pit because of sleep deprivation in the last couple of days. Was hoping to take help of meds to get out of it.
I also found pregabalin was highly sedating and it was difficult waking up in the morning. Of course everyone will react to it differently. It’s worth a try since it’s less controlled and easier to get it prescribed
When I lived in Chicago, my RLS doctor was Babak Mokhlesi. He’s with Rush medical center. Great doctor and highly knowledgeable about this disease. Very pleasant person too and he took the time to explain my treatment. He was also an instructor at the time at pritzker medical school.
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