It’s been a good long while since I’ve posted, so apologies for this mega volume of a message…
I’ve been on Gabapentin for a good long while now… started off on 900mg now on 1200mg, but it’s no longer working effectively. Not keen to increase as I got bruising to my arms when I increased to 1500mg.
I’m also having to take 400mg of ferrous sulphate every night. Am I entering Augmentation with gabapentin?
I’ve not had my levels checked as I’m a good way from my GP practice and other health conditions prevent me travelling.
I’ve also made a few observations I’d like to run past you lovely peeps, if I may?
If I don’t do any exercise whatsoever then the kicking is not quite as bad, but if I even go for so much as a 30 minute walk at say 7am, then take it easy for the rest of the day (do nothing) then by 11pm I’m in trouble, real trouble and I’m awake until the daylight comes up and my dopamine levels rise… having said that, IF I turn on a light and lie there then the shocks start to lessen until they cease altogether. Light off and within a short while it starts building again.
“The kicking” I get the shocks down one leg for say 30 minutes, then it shifts to the other leg then back and forth, but not in both at the same time. Is this and having the light on the same for others?
I’m glad it’s not in both at the same time, I’ll admit that…
I recently had to stay in A&E with a family member and I did not have my gabapentin with me… I went all night with no effects at all, due to the brightly lit environment.
Final observation and one I’ve mentioned before…. If I get up and eat a small bowl of cereal of a biscuit or two, then this seems to occupy my brain and the shocks and kicks also cease for a while and I can get off the sleep for a while, but then I’m woken again and we’re off again, kicking and screaming.
That’s it… and apologies for the ramble…
Bless you all and keep safe.
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Gabapentin doesn't cause augmentation, only dopamine agonists do that.However, Gabapentin does seem to cause tolerance ( the need to take a higher dose to achieve same cover). As you experienced bruising when you increased to 1500mg, there are 3 possibilities.
1. Get full iron panel blood tests and ensure serum ferritin is above 100ųg, preferably 200ųg/L.
2..Switch to pregabalin. It may not cause bruising. You can make a straight swap. 1200mg Gabapentin is equivalent to 200mg pregabalin.
3. You can ask your GP for low dose opioid. The long half life opioids ( methadone and Buprenorphine) work very well. You may need a neurologist referral to access opioids.
I can't comment on exercise or the lights, but moderate exercise early in the day is helpful for most RLS patients.
The lights on is interesting. I had PTSD after a hellish withdrawal from Ropinirole and I had to sleep with the light on for over a year. It was clearly a psychological issue. Perhaps that is why you sleep better with the lights on?
Hiya… I can’t actually sleep with lights on, it’s just that with a light on the kicking decreases… I then have to turn light out to go back to sleep, then I’m woken again when it all kicks off…
I’m scared to do any exercise now.. being totally honest.
I can't comment on the light which is strange, but take advantage of it,Nor the exercise since moderate exercise helps almost all people on RLS.
Gabapentin does not cause augmentation. You don't have to go up to 1500 mg. Try increasing by 100 mg.
Or you might switching to pregabalin as I suggested before.Although it is basically 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. Divide the gabapentin amount by 6 to get the correct dose.
Or the dipyridamole I suggested.
If none of these work then you need a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.
I may have given you the following before but in case I haven't:Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Ask your doctor to prescribe the 100 mg capsules. If you decide to go to pregabalin divide the 1200 mg by 6 to get the equivalent pregabalin amount which would be 200 mg.
I'll just say that if the RLS is due to mold exposure, low doses of gabapentin will not do it. I had to take 3600mg before bed to get any sleep when I was in mold exposure. This is one aspect that is basically unknown, because the entire category of mold exposure is also unknown and the effects on the susceptible are extreme; then they get treated with drugs for symptoms instead of being asked whether they have tested their living and/or working areas for toxic molds; when getting out of that environment would cure the problem, although the recovery can be lengthy depending on length and type of exposure.
I do live in a high moisture environment, but I’ve also lived in so very mouldy places and my current abode doesn’t smell of mould and I’ve not seen any, but that’s not to say spores are not in the air?
Thank you for this..
I cannot leave this environment as it’s my home, so is there anything I can take apart from gabapentin to counteract any effects if I have been exposed to spores?
I can't answer that as asked. You may or may not have mold-susceptible genetics; about 24% of the population has an HLA that responds with extreme inflammation when in exposure to molds that produce toxins. Lots of molds do not produce toxins, but some do. "Black mold" is a colloquial term for molds that produce toxins, but the color doesn't really mean anything; it's just that one of the most toxic, stachybotries, is a greenish-black color and has become known for being highly toxic.
My house had a different toxic mold from a pipe leak inside a wall, and I live in the desert, and extremely dry environment, often with humidity of about 4%. (not 40%, 4%.) My home had extreme amounts of spores and mycotoxins from this mold, but this mold has no odor. No one could smell anything. Only when I was convinced to test by someone who knew about mold, did I find out what I was living in.
Buildings with water damage (such as mine, but also from roof leaks, window leaks, other types of water intrusion) can be remediated but the process is expensive and often does not work the first time. Then the contents of the building often have to be discarded because they are contaminated with spores and mycotoxins. Much can be accomplished with ozone, which is what I did with my house, but -- the intensity of ozone that must be used will kill everything living in the building, so obviously it must be cleared before it can be ozone. Remediation generally involves removing anything that has mold growth, sometimes including structural members. Many have to take their houses down to the studs.
I'm sure this is way more info than you were seeking but perhaps it will be useful to someone here.
If you want to find out your health status due to mold, there is a huge web site that will tell you everything you could possibly want to know: survivingmold.com
There is also a book of the same name (Surviving Mold) that has a lot of extraneous information about legal action against owners of water damaged buildings that made people sick, but the information about mold-caused illness and the treatment for it is in there also.
There is a series of blood tests that can be done, and I don't know how available they are in in the UK. In the US, there is an organization now called ISEAI that has physician members of several types of physicians, from MDs to NDs. A simple one is the c4a and once again I don't know how available that is in the UK. Here in the US, you still have to find a doc and lab who can/will do it.
Your situation sounds EXACTLY like mine was when I did not know that my house had developed a pipe leak inside a wall and was growing mold. Whenever I slept somewhere else, I had no problem. I was still working and went on business trips a few times a year; I loved that because I'd get a decent night's sleep. I also went to a particular place on vacation and slept well there. I could never figure it out.
Test your house for mold! Do the the HERTSMI-2 mold test, available inexpensively through mycometrics and envirobiomics dot coms. I strongly suspect this is what is going on with you and encourage you to take action immediately and find out.
Hi. My RLS is always bad between 17:30 and 04:00 but if I go to a cinema mid day, my RLS starts after about 20 minutes so I have to take dihydrocodeine to be able to sit. I know melatonin production starts with low light and for most people with RLS supplementing melatonin is a trigger so I guess I thought it was that. Also I just read "One theory suggests that melatonin can inhibit dopamine release by suppressing calcium influx into stimulated nerve endings" so I guess it's on "their" radar.
I think that there is also I circadian evening uptake of brain iron specifically, which is why some doctors suggest low evening dosing of iron, low because I think brain iron amounts to only 3% of the iron we dose, and is unfortunately where we need it to go!
Anyway, for me, lights off is definitely a trigger but as an insomniac regardless of RLS, lights on will never be my cure.
I never knew melatonin can inhibit dopamine. So glad you mentioned that because I sometimes take some before bed and now thinking that might be a trigger for me. I will have to check that. The odd thing with RLS is everyone is different and once I find something that works it does not last long. I only try natural things as I am against taking any prescription drugs because they all have side effects. For me walking is very helpful. Also a small amount of black coffee always works which I drink before I have to sit long, like seeing a show or a plane ride.
you sound just like me!! That’s exactly what happens to me. I’m on 600 gabepentin at 7 pm along with a rotigotine patch then 600 mg gabepentin before bed. It seems to be working for the most part. But yes, stops with light and unfortunately something to eat as I have gained weight . Not happy about that. Good luck to you!!
Yes, I’m keeping an eye on my weight.. sometimes double helpings of cereal if I’ve overdone the exercise, which to most it seems is not overdoing the exercise😢
Although I am not on gabapentin I suffer RLS much worse after even moderate exercise at any time of day. I tried to push through it , also tried swimming nice and easy but the brain does it's thing and I will have a bad night . I also noticed the brain distraction relief. If I can keep busy or engage in something when my legs are due it will sometimes pass.I have also tried dancing ( don't do it ) .
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