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
Written by
shivermytimbers
To view profiles and participate in discussions please or .
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
For the surgery for your transplant - Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you.
Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea.
Although I don't normally suggest you take a DA like ropinirole or pramipexole you will probably be unable to get up and walk around so you might want to talk to your doctor about this. A small dose should work. but you want to come off it as soon as possible. Don't be tempted to stay on it as up to 70% of people will suffer augmentation which believe me you won't want. Or better yet the opioid they give you for the surgery might be enough if they let you continue it while you are unable to get up.
You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"
After your surgery your RLS may get worse for several reasons - inflammation from the surgery, withdrawal from any opioid they gave you and if there was blood loss your ferritin may have gone down. All of these are temporary but may take awhile to go away.
Sue, I'm not on any meds for RLS since I came off the Pregabilin.
Will probably stay like that until after the kidney transplant. Most likely, after the operation, I will wake up on a morphine drip.
I will have to go back 3 times a week after the transplant so, hopefully, there will be plenty of opportunities to discuss things. I might ask for an opioid then if the RLS is back.
My main aim is to avoid rejection of the kidney and that means lots of immunosuppressants which means trying to avoid infection, at all costs. So, I'll take whatever meds they give me and worry about the RLS later. It's simply about survival. Later I'll deal with quality of life.
Hi SurvivorD (great name!), I appreciate the post but I don't use instagram or tweet stuff or facebook or any of them things so I have no idea what that instagram thingy says. I'd much prefer if you just wrote stuff so we can empathize with each others situation. You have an interesting bio. Lots of support here. Have a go.
Looks like you are not on dialysis yet and are shooting for a preemptive transplant?
I have been on dialysis for 3 years and suffer from severe RLS. I was also not able to tolerate Pregabalin and/or Dopamine Agonists.
imo, you have three choices:
1) Do nothing and hope RLS goes away after transplant - there is a good chance for that if your RLS started recently. Drawback is that you will have to suffer until the transplant but no side effects to worry about.
2) Give Dopamine Agonists a try and see how you feel - taking it for a short time until your transplant is not an issue and your Nephrologist should be able to prescribe it. You might have a hard time tolerating that as well.
3) Start the process of finding an opioid that works for you. You'll need to find a doctor to prescribe it, your Nephrologist won't do it.
Personally I ended up taking Percocet 5mg, it works really well and I have no side effects, but I tried many other opioids before that. I also take Clonidine at night to help me relax and fall asleep.
Hi bumblebee, that's very useful to see the options listed like that.
Yep. Hoping to avoid dialysis. Having a preemptive kidney transplant (for those who don't know and want to know that's a transplant where you've never had dialysis. It's thought to have the best prognosis) in March. Hopefully. No definite date yet but they're talking about March.
I'll be choosing two options: 1& 3. Hoping for 1 but preparing for 3. I hadn't known that my nephrologist won't prescribe an opioid. That could be a problem.
I'll be reading up on Percocet and Clonidine.
You have a very impressive Bio there. Hope you pat yourself on the back frequently. A friend of mine actually reaches round and pats himself on the back, saying "Well done, Nathan"!
Thanks again. Sorry to hear about your "severe" restless legs. Can be a right pain in the proverbial.
s/he might prescribe an opioid but a neurologist is the usual one to recommend it to your GP who if it is not red listed in your area will prescribe it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How to manage depression and other side effects from methadone/clonazepam for RLS
RLS and methadone tolerance
pregabalin side effects
Lyrica ocular side effects and more
Medication side-effects 
