After 7 days on 25mg Pregabilin daily and feeling absolutely zero change I upped it to 50mg. Straightaway, I detected an improvement in the RLS. Sleep, that rare beast, had returned.
However, I now found I couldn't walk a straight line, stumbling, very anxious, had to get a walking stick to support me, agoraphobic, cognitively impaired, confused, couldn't hold a conversation, start a sentence n couldn't finish it, terrible bad memory, blurred vision, dizzy, etc. etc. Life had become an abomination.
I was going to have to make a choice between terrible nights or terrible days and, caught between a rock and a hard place, I opted for terrible nights. Gave up the Pregabilin. It took 16 days with my GPs help. But that was only half the battle. The side effects persisted very strongly. They turned me into a recluse almost overnight. I had to keep pushing myself to leave the house and get out of my comfort zone. I'm just about back to being myself again after two very difficult months. Though, of course, the RLS is back with a vengeance. I'm writing this, wide awake, at 4.20 in the morning. As some guy, jokingly, once said, I didn't even know there was a 4.20 in the morning. He obviously didn't have RLS.
The good news is I got rid of all the side effects of the Pregabilin in about 2 months. But that took me right back to square one. After what I'd been through, though, I was relatively happy to be out of that dark tunnel.
I have a kidney transplant in a couple of months and there is a chance the RLS will then go away. Or reduce, or stay the same. Or get even worse! Well, we'll see.
Incidentally, my haemoglobin is 108 and I had an IV drip to try and increase it last week. No results yet. My Ferritin, by the way, is 149. My eGFR is down at 13.
I am on Amlodipine (5mg) and Lisinopril (10mg) for blood pressure. Simvastatin (10mg) to protect my heart - most people with Chronic Kidney Disease die of heart failure, my cholesterol is fine as I'm a vegan. Calciferol (calcium) and Sodium Bicarbonate for kidneys.
I've read on here that Amlodipine and Statins are contributory factors for RLS.
Incidentally, from what I've read elsewhere, any medicine can cause side-effects. It's just a matter of luck.
I'm new on here. I found this place about a week ago. It's a tremendous resource. Thanks everybody for making it so. I'll be thinking of you all the next time 4.20am rolls around.
Good luck
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shivermytimbers
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Welcome to the forum. You will find lots of help, support and understanding here.
Yes your blood pressure medicines can make RLS worse. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
I'm sorry you had such a bad experience with pregabalin. Part of your problem is you came off pregabalin too fast. If you do it slowly enough you would have had less withdrawal symptoms although yours were extreme.
Be sure your doctor does not prescribe ropinirole (requip) pramipexole mirapex) or the Neupro (rotigotine) patch. Since pregabalin caused such bad side effects gabapentin probably will too.
That means 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 on of the others be sure you are given enough to take them that often.
If you are in the UK you will have to see a neurologist who will recommend it to your GP and most won't so let me know where you live and I may be able give you a recommendation.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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, 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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in your gender and any other health conditions you have.
Regarding Pregabilin: Side effects. No withdrawal symptoms. Took my time. Had good medical advisers.
Lisinopril, an ACE inhibitor, as well as being for blood pressure, also has a beneficial effect on the kidneys. Will consider changing from Amlodipine, though, post transplant. By then I will be on a load of immunosuppresants, anyway, to avoid rejection of kidney. Going on new med tomorrow for OAB - Betmiga 50mg - been told it will almost definitely raise blood pressure. So can't make any changes to meds until I see how that goes and the transplant.
No salt in my diet. Home cooking. On Caldwell Esselstyn diet.
To help convince the neurologist or your doctor if you live in the US that you need an opioid check out the following and refer your doctor to them if needed:
The Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment Https://mayoclinicproceedings.org/a...
I also recommend you join the Restless Legs Foundation at rls.org especially if you are in the US. An international membership is $40 and they have lots of information on their site and a monthly magazine
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