TOO HOT, TOO COLD= NO SLEEP

[fishinphil1946]

Tonight my RLS and body temperature regulation are going wild. Covers on and I sweat; covers off and am cold. I can't lay down for 1 minute without twitching and getting up. About a week ago I completed a 38 week reduction of pramipexol from 2.0mg / day for 7 years to 0 mg. Four days ago I started taking 0.5ml of CBD oil twice per day. I also tried to reduce my 1200mg/day gabapentin by 300mg. My gabapentin comes in 300mg capsules so I can't reduce slower. I thought I might try to reduce the 50 lbs I gained but I still eat all night so maybe the gabapentin was the major weight gain problem? I also have genetic peripheral neuropathy.

At 75 years old I don't know if I can or want to survive many more of these nights. I admire the members who have gone 40 years in a similar condition. I don't think that I am that tough! Perhaps I should stop the CBD oil?

[Elffindoe]

I think you may be making a mistake in thinking that stopping ALL medications for your RLS is ultimately going to be of any benefit for you.

Your RLS sounds severe and without some medication it is going to be completely untreated.

Pramipexole : This may have been causing you augmentation in which case it was a good idea to stop taking it. The dose you were taking, 2mg was well in excess of the recommended maximum of 0.75mg.

It can be at least 2 weeks and even longer before withdrawal effects from pramipexole subside and you aren't there yet.

Gabapentin : gabaoentin is not very effective against withdrawal effects or when there is augmentation.

You wasn't really know how effective gabapentin can be for you until the pramipexole withdrawals have definitely subsided.

The weight gain, I appreciate, is a major problem, but otherwise I can see no other reason for reducing gabapentin.

You will be left with nothing to control your RLS.

The term "CBD oil" is meaningless. There are many different products on the market bearing this label. It's not an approved drug and hence what's in any brand and how much is wildly variable.

Most CBD oils are going to be useless for RLS. There is some anecdotal evidence that oils with a relatively higher THC content can help.

There is evidence that medicinal cannabis can aid sleep, pain and anxiety, but none that it can relieve RLS symptoms. This means medicinal cannabis is a good adjunctive treatment for RLS in conjunction with other meds.

The remaining option for RLS if pramipexole and gabapentin have failed is an opioid. This is recommended for "refractory" RLS. See the link beklow,

Note also you should also have your iron levels checked and identify and aggravating factors. These are alsi mentioned in the link,

mayoclinicproceedings.org/a...

[DicCarlson]

Hang tough! As Elffindoe has suggested "you're not there yet" the withdrawal needs to run it's course. I suggest the hot/cold is a withdrawal symptom.

[fishinphil1946 in reply to DicCarlson]

Thanks to Elfindoe and DicCarlson! After 9 years on pramipexol I should expect the withdrawal problems. However, expecting and trying to live through it are two very different mind sets. One noticeable change going off pramipexol was the my ankle swelling is gone. I am keeping the 300mg gabapentin at 5pm and 900mg at 8pm. I saw a pulmonologist/sleep doctor last Monday and he added 325mg prescription iron supplement plus vitamin C and an over the counter magnesium supplement. He doesn't seem to trust the ferritin tests because iron is stored all over the body and it is brain iron that matters. He is checking my 2 CPAP units because they don't seem to be adding the water. He is a believer in the CBD oil.

I have found that as my weight increased to 238 from 184 pounds my breathing became more labored and I wheezed more often. I went from less than 5 apnea events to over 20 per hour when I gained the first 20 pounds in 2 years after taking pramipexol and gabapentin. I am not a fan of trying the various pills. I know a life style change to losing the 50 pounds is the safest remedy I should try; it is so hard to do. I feel sorry for the resident Latino population here in south Texas where obesity is a major problem at all ages. A trip to Walmart is a constant reminder that anyone can become grossly obese.

[TeddiJ in reply to fishinphil1946]

Hi. The weight seemed to just fall off of me when I stopped the DA's. It was bizarre but fantastic! I hope this happens for you, too.

I have been on and off Horizant, a form of gabapentin, and it did not affect my weight.

[Merny5]

This is probably one of the most difficult things that you will be faced with. Stay strong because it will get better. The constant eating may even diminish once the DA is out of your system. The Neupro that I was taking caused me to have obsessive eating, especially at night. I was shoving one thing after another into my mouth. I even went to a hypnotist to stop this behavior. It wasn’t until I was off of the DA did the compulsion stop. I have now lost the weight And some! In a few weeks, let us know how you are doing.