O.K. as you are aware I talked my doctor into prescribing Gabapentin instead of Ropinirole. One obstacles out of the way. However I'm not sure that how she wants me to take them is correct. Also I have no Idea as to when they will arrive. She also has prescribed potassium tablets for my low registry of same. Potassium may be why I have little taste and it may help my tinnitus, all another story. I just now had to stop writing this as my legs are flaring up. When I feel this onset early enough in the evening I stand on a medical ice pack I keep in the freezer until I can't stand it anymore and this relieve/delays the inevitable for a little while, or I take a shower, if possible and alternate hot and cold for about 30 minutes. Anyway; Last night marked the third or forth night with no pramipexole and was the worst night I've ever experienced. Walked ALL night and obviously was asleep during most of it as I bumped into walls and fell down, magically appeared in different rooms in my house without remembering how I got there and knocked over the television in the living room. Funny thing is that it's not so much that I was experiencing Restless leg as it was that I just can't sleep along with it. About two hours ago I went and picked up some CBD oil and some 750mg THC gummy bears (10 pieces 75 mg each). I took 20 drops of the oil and will take 20 more twice before bed tonight. Leaving the gummies for later if necessary. I have had the gummies before but they leave me groggy the next day. You gave me the steps to start on Gabapentin but she seems to have the V.A. plan, ha! My oldest son lives in Colorado and Boulder college is THE place for cannabis research. They say that CBD oil is superior to THC. We'll see.
Here are the pharmacy directions from her.
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300mg is the STARTING dose for under 65. Over 75 should start on 100mg.
But you then increase by 100mg every other night up to 900mg and stay at 900mg for 3 weeks to see if that dose works. You can then continue to increase by 100mg until the RLS is controlled.
And you split the dose and take 300mg then 2 hours later take 600mg. Any dose above 600mg is poorly absorbed.
Your VA doc needs to re read the Mayo Algorithm ( link below) so she can see the average effective dose is 1200- 1800mg. 300mg won't help much!
If you mean that 300mg is how you get used to the drug and then you have to accelerate upwards after that time to keep it functional then I will find the parameters, I believe you already sent them to me, and let her know. Thank you. As everyone with this illness knows any relief is welcome and right now I am elated in just the fact that I may be on the right road. BTW! Yesterday someone mentioned Skullcap tea. Is this of any help for RLS?
I have been on pramipexole for over 30 yrs and am augmenting bad on them but have tried everything everybody has suggested on here, allergic to Gabapentin, Rapinerole etc tried all and no good, consultant said I Severe RLS AND PLMD, and doesn't know where to turn next,,
Curious to know about your allergic reaction to Gabapentin. I’ve been taking pramipexole for over 10 yrs and am still on a low dose but starting to notice some augmentation (or either I’ve had too much caffeine or sugar). That is my biggest fear. I tried gabapentin for back nerve pain and felt like I could not function.
Redders- the first thing you need to do is find a consultant who actually knows about RLS.If you're allergic to Gabapentin you will need a low dose opioid. Go to RLS-UK and print off the withdrawal schedule under useful resources . And Iron therapy.
You need to get off it. The last time you said you were down from 6 to 3. What are you on now?
You mentioned something about a trial of methadone. What happened to that?
You say you were allergic to gabapentin - what did you mean by that?
I gave you this advice before but it has been awhile so will give it to you again.
If you are suffering now I suggest you add .half of a .088 tablet and wait until your symptoms settle.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount Wait until the increased symptoms from each reduction has settled before going to the next one. I mentioned you could get a jewelry scale if this is too much to reduce. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. Since you are allergic to gabapentin try pregabalin. Although they basically are the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 75 mg pregabalin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 25 mg every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
Have you had your ferritin checked? I know you were taking liquid iron but knowing your ferritin is important. If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
If your doctor won't prescribe an opioid which you will need if pregabalin doesn't work out and you tell me what city you live in I may be able to tell you the name of a neurologist you could see who will recommend an opioid to your doctor.Also if you can get an opioid it will help you get off pramipexole.
You were taking some medicines for your blood pressure and cholesterol that make RLS worse and I gave you the names of some medicines that are safe for RLS. Did you change those medicines?
Having been on Gabapentin for 5 years for a neurological pain condition and for Erythromelalgia in my feet. I take 2,600mg per day and it doesn't touch the ER. If I don't get my feet cold then I get RLS. If the Gabapdntin doesn't work, try Amytriptiline.
That sounds like a lot of Gabapentin, I don't know yet. I'm curious about the getting your feet cold. It's 1:30 a.m. here and I'm standing on my ice pad as it gives me a little relief for about 1/2 hour, but worth it. There are so many things one can try and my two favorite (ha!) if there is such a thing are extremely hot water for a few seconds and then switch to extremely cold, for about 20 minutes. I'd say the ice pack is the best, fastest though.
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Peaceful nights at last!
Update on full spectrum CBD
My RLS is over because of 50 mg of CBD oil - Broad Spectrum Hemp
Returning to Gabapentin
