Worried about my health now

[Scattypatty]

Hi everyone, had really good advice from fellow suffers before and desperately need your help more than ever now before I go totally bonkers.

Weaned myself completely off Ropinirole about 2 months ago now which was pretty horrendous as I had been taking them for such a long time. My doctor prescribed Pregabalin and I gradually increased my dose to 1 1/2mg which I took for about 3 weeks and then stopped them. I really didn’t feel good at all while on them, terrible headaches, eyes really sore, and they didn’t seem to be helping my legs at all. I took Co Codamol for the pain but they didn’t help hardly at all either so I have had very, very little or no sleep at all for weeks now. I saw the Doctor a couple of days ago and he prescribed some sleeping tablets which he advised to take on their own which means I’m not taking any medication for my RLS. I took one tablet tonight about an hour before going to bed and guess what I was back up again legs raging after less than 1 1/2 hours sleep. So here I am now before 2 o’clock in the morning, desperately seeking help. It’s a very lonely world at that time in the morning and I am feeling so down now, it worries me what affect all this is having on my body, I’m 74 now and I really don’t need this. Unless you are a fellow sufferer people just don’t realise how bad it can get. It doesn’t help that I have a husband who is snoring away every night not having a clue what I’m going through.

I HAVE JUST HAD TO HALT THIS! Got terrible stomach cramps and had diarrhoea badly, is this because of taking the sleeping tablet?

Is my next move to try and take Gabapentin now? And what happens if that’s not successful either what do I do next?

I look back on the early days of taking Ropinirole and the sheer joy of getting such a good nights sleep after years of suffering with RLS. I feel I have gone totally back to the beginning again, some days I wonder if it was a good idea to come off them even though I was augmenting but at least I was getting some sleep.

Thank you for listening, and I appreciate any advise you can give me.

X

[Hidden]

Gosh, sorry to hear about your situation and I can appreciate your worry about your health.

I can't offer any immediate solutions, there are things you can try that may help. However they may take time to help.

It's a great shame that you had the side effects of Pregabalin. A couple of points about this. One is that the dose you mention doesn't sound right. 25mg seems to be the minimum starting dose. Usually the starting dose is insufficient to work and you have to build it up until it becomes effective.

The other point is that it does take some weeks to become effective.

It does appear that you may have stopped taking it just when it might have started working.

I do appreciate though that it may have been due mainly to the side effects. These tend to settle after a few weeks. I don't know if you tried, but co codamol might have helped with headaches.

You don't say exactly what "sleeping" tablets you've been given, so I can't confirm that what you're experiencing is a side effect of these or something else.

The usual insomnia medication associated with RLS is a benzodiazepine, Clonazepam. None of the listed side effects of.Clonazepam include your current symptoms. Sometimes a "Z" drug is used e.g. Zopiclone which leaves you less drowsy the next day. Zopiclone can cause stomach upset at first, not diarrhoea. This should wear off after a few days.

Neither will really control RLS symptoms.

Gabapentin may be your next option. This does have side effects. Headaches is not listed as a side effect.

If you do start on Gabapentin there's a few pointers.

You may get side effects which again may wear off or diminish after a few weeks. Because of these, it's better at first to take it just before going to bed.

It does take up to 3 - 4 weeks to become effective. A starting dose is 300mg, then build up the dose by 100mg every 2 days. At first to achieve effectiveness you may have to build up to 900mg or more. When you're taking more than 600 mg you can start splitting the dose taking one 3rd earlier and two 3rds later.

Do not expect an immediate effect like you probably experienced with Ropinirole. That doesn't happen with Gabapentin.

In the meantime it may be helpful to take an opioid. Over the counter Co codamol may not work as there is too little codeine in it. You can't take more tablets to get more codeine, because you would be in danger of taking too much paracetamol.

It may be difficult to get your doctor to prescribe a stronger opioid such as Tramadol, but, if you have pain you might be able to get codeine phosphate, or at least prescription strength co codamol.

The opiate will help control RLS symptoms until the Gabapentin starts working.

Unfortunately, your doctor may have misguided you. To reduce the severity of the Ropinirole withdrawal.symptoms and to prevent having these period where your RLS is completely uncontrolled, it would have been better to start Gabapentin before reducing the Ropinirole.

I'd advise then that you don't let him/her rush you into things and make sure you get a sufficient dose of Gabapentin. Don't stop taking it after 3 weeks because you think it isn't working.

I'm not completely convinced that the gastrointestinal problems you're getting are entirely due to medication. There may be something else going on. You may wish to discuss that with your doctor.

Otherwise in the short term you could consult your local pharmacist. You might be advised to take something to correct any electrolyte loss e.g. dioralyte. You can also now buy Buscopan over the counter to relieve stomach or bowel cramps.

You do have my sympathy, insomnia is horrible. My own sleeping pattern is pretty bad, partly because of the time of year. My wife also makes the most horrendous noises in her sleep. However, I'm much better than I was a year ago when I was suffering augmentation due to Pramipexole. I stopped that entirely a few months ago and now take Gabapentin with NO RLS symptoms.

[Scattypatty in reply to Hidden]

Hi Manerva, sorry I got a couple of things wrong, that’s what you get when you try doing this in the middle of the night with a lack of sleep!

I did start on the 25mg dose of Pregabalin as you said and worked it up to 125mg (I gave you the dose of Ropinirole I was on) so I had been told correctly how to take it. I also took a prescription Co Codamol of 15mg. One of the other problems I had with Pregabalin was weight gain, I have been slim all my life and couldn’t handle that. I hope Gabapentin doesn’t have this side effect as well. I’m so desperate to find a solution very soon as I fly to Australia in February and everyone that suffers from RLS will know the nightmare that lies ahead of me.

I have had one of the worst nights ever, tried everything but my legs have not quietened down at all, in fact I’ve felt worse by taking the sleeping tablet, which is called Promethazine hydrochloride 10mg.

Did you suffer many side affects from taking Gabapentin? You seem very knowledgeable about all of this, did you ever try controlling your RLS without taking these drugs.

Thanks again for all your advice, much appreciated. It looks like you were up pretty early yourself to reply so quickly 😵

[Hidden in reply to Scattypatty]

Sorry to hear you had such a bad night. I sleep fairly well at the moment averaging at least 6 hours a night, or I should say day. The problem, if it is one, is that at this time of year I can't get all the sleep at the same time. I have 2 sleep periods, not one. I woke at 2am last night, later went to sleep again until my wife woke me at 9.30.

This time last year I was lucky if I got 3 hours sleep a night.

Sleep patterns are regulated by daylight (and dark), so in the longer nights my sleep pattern changes. I am very much influenced by how much daylight I get.

It remains a shame about the pregabalin causing you weight gain. doubt if that particular side effects does wear off. I also don't know why it affects some people and not others.

As Madlegs says, the sleeping tablet you've been given, Promethazine, is known to make RLS worse. I'm afraid your doctor isn't particularly well informed about RLS,. This is not unusual and GPs can't know everything. So you will have to check everything he/she suggests.

A short acting sleeping tablet would be better than Clonazepam, but Zopidem should be avoided as it can cause sleepwalking and is therefore a little risky. Zopidem is also known as Ambien. Zopiclone would be better.

I do suffer side effects from Gabapentin. I take it 2 - 3 hours before bedtime so don't notice the side effects too much. It can make you drowsy soon after you take it, at first, this tends to wear off. Sometimes I feel a but groggy in the morning. Sometimes I feel a bit dizzy, but never nauseous. It does affect my balance a little, but I've never fallen over. It can also affect walking, but this has never caused me a problem. Overall, for me the benefits of Gabapentin far outweigh the side effects.

Some people gain weight taking Gabapentin, I haven't. Since starting on it, I decided to diet and lost 10 Kg.

Quite a few people say that Cannabis helps their RLS. This may be true, but they take it illegally.

CBD oil is claimed to help with RLS, but the CBD oil you can get in the UK, legally that is, is very variable and there's no evidence that it works for RLS, or anything in fact. A newspaper article I recently read described CBD oil in the UK as a scam.

If Gabapentin fails, then your next option is an opiate. I hope it doesn't come to that since it might not be easy or possible to get a prescription. You'd probably have to see a nuerologist specialist.

As I previously wrote, you might be able to get your doctor to prescribe codeine phosphate.

Tramadol is known to cause augmentation, so really shouldn't be used regularly.

The opiate licensed for RLS in the UK is called Targinact.

[BLUES60]

So sorry to hear you are in such a bad Way, I know exactly how you feel, crawling the walls is not nice, and unless you have been through it I don't think people really understand, but I promise you things will get better, I went through a lot of of pain to be free of that drug, trouble is all drugs in the end turn round from helping then attacking you worse than before, it's 6 o'clock in the morning and I have hardly slept, trying to wean myself off pregabalin on 125g weaned myself down 175mg but I've been so bad last 2 nights I think I will go back to 2oo for a bit then try again, as the band the verve said The Drugs don't work, they all ways turn round on you, good luck and keep at it things will get better, just be careful with any drug you take

[Scattypatty in reply to BLUES60]

Thank you for replying. Sounds like you are going through a bad patch as well. Once you have weaned yourself off Pregabalin have you got anything else lined up to take. X

[rkatt]

Until September this year I was in a terrible state, not only due to sleeplessness but acute RLS pain. I now take 20/10 mg Targinact and 100mg Gabapentin. This has massively helped. I supplement this when necessary with cannabis and kratom (both illegal in the U.K.) I previously took Pramipexole for two years before it augmented badly and made my RLS 100 percent worse permanently.

What you’re going through is horrible. I suggest you try Tramadol and Gabapentin. If that fails ask for Targinact. If you’re okay with cannabis though, or it’s legal where you live, I’d recommend it highly too, as a stopgap at least.

Hope you get help!

[Scattypatty in reply to rkatt]

Thanks for that. I will take note of what everybody has said so I can make sure I have enough info when I see the doctor next. It’s heartening to hear that people have found their own solution to this horrible condition.

[Madlegs1]

Sorry for all your troubles.

You have got good advice.

Just some small additions.

Sleeping pills should be shortacting-- zolpidem, Ambien, Halcyon, Stilnoct are all good. Won't leave you groggy next day, if taken at least 6 hrs before getting up time.

Avoid taking magnesium within 2 hrs of medications, especially Gabapentin or Pregabalin. It binds with them so the body doesn't get the good.

Can't add much to what the others have said.

Good luck.

[Scattypatty in reply to Madlegs1]

Thanks for your reply, I’ve taken note of what you have said.

[Tamaroy]

Hi, I started Gabapentin just over 3 weeks ago, now it has kicked in, I am a long term sufferer, I am hoping that I can stay on it long term. If you can put up with 3 weeks of sleeping little and often until it kicks in proper.

I have also stopped caffeine, and take Iron, B12, B6, Vit D in the morning and a SMALL amount of Sanatogen before going to bed, seems to be working.

Some sufferers are trying CBD oil with success I would recommend a reputable supplier such as Infilife CBD, they have various strengths, and is the real deal, they are very helpful, unfortunately I could not afford the prices.

Wishing you luck.

[Scattypatty in reply to Tamaroy]

Thanks, that’s encouraging and I’m glad you are reaping the rewards now. Good luck .

[Jelbea]

Hi Patty. So sorry to hear of the distress you are in at present. I can really feel for you as I have been there on more than one occasion. I am not sure what planet your doctor is from but promethazine hydrochloride (Phenergan) will make RLS worse.

I note what you say about Pregabalin and take on board the fact of increased weight as a side effect. Some of the others here are saying that the side effects often ease as time goes on and I am sure this is the case. However one has to keep in mind any other health problems and in my case I have macular degeneration and just would not be willing to risk the side effects of Pregabalin which can affect sight. You may also be like me and be super-sensitive to medication in which case you will suffer every side effect mentioned! Lots of people on this site seem to be OK on gabapentin or Pregabalin but I was unable to take either.

For years I took Codeine 30 mg. at night which kept things bearable but in the last two or three years this did not work any longer. I now take an opiate Longtec (long-acting oxycodone) 5 mg in morning and 10 mg. bedtime. Whilst this is not the complete answer it means I am a lot more settled and getting much better sleep. I was lucky that my husband was very understanding of the RLS but it is so hard when someone next to you is sleeping like a baby and you are ready to scream. However, this is preferable to being all alone in the middle of the night. I always knew that I could have wakened him if things got too much for me and he would have supported me.

I see you have received lots of replies and I wish you well in sorting your treatment and hope you can get some peace again. I will be thinking of you.

[Scattypatty in reply to Jelbea]

Thank you Jelbea, it’s so comforting knowing there will always be good advise and support here. It makes sense to me now after you said about the sleeping tablets not agreeing with RLS. From 1:0clock last night until mid day today my legs were raging, even a hot bath at 4 this morning didn’t help to settle them.

I’m now wondering whether it’s worth me trying Gabapentin, as you rightly said I do seem to be super-sensitive to medicines. If I start taking them and they don’t work out it would be about the time I go to Australia. Why is life so complicated!!

Thank you for your support x

[Shumbah in reply to Scattypatty]

Will you only be visiting Australia ?

I tried a lot of things and have recently gone on to buprenorphine which is an opioid I was prescribed to 2 mg nightly , last 2 nights I have only needed a quarter of that dose 0.5 mg half the size of a grain of rice . It has changed my world all positive , I actually feel normal 🙂

[Joolsg]

You have received excellent advice so there isn’t much I can add. You have been taking pregabalin for about 2 months & slowly titrating up. When I started pregabalin the side effects worried me- leg swelling, weight gain, dizziness, double vision BUT they all disappeared after about 3/4 months ( I realised the weight gain was because pregabalin increases your appetite). If you can’t bear to stick with pregabalin for another month or so, you will need to take another med as your RLS is causing you lack of sleep and distress.

As others have suggested, low dose opioids may suit you better.

Also check your serum ferritin ( above 100) and serum iron( above 60) as RLS can be greatly reduced for 50% of sufferers by raising levels.

In the meantime, codeine in Solpadeine Max from Boots or pharmacies may give some respite.

[Scattypatty in reply to Joolsg]

Thanks Joolsg, I’m making a note of what everyone has told me and will take it with me next time I see the doctors.

[pilateskid]

You have my sympathy. Hubby moved to another bedroom, one to get peace and as he said .....frightened to move in case he awakened me , he knows I don't get a lot of sleep.

I suppose I'm lucky as we went private to see a neurologist, he has taken me off all dopamine meds. I'm on different meds , can't remember the name, getting to get relief during the day, still the get Rls a little at night.

[Scattypatty in reply to pilateskid]

Hi pilateskid, well done for getting off all the dopamine meds, it’s not easy is it? X

[Pippins2]

Hi as your Codamol is only 15 mg Codeine you could ask for 30 mg Codeine alone without the Paracetamol added in Co Codamol so you would be doubling the Codeine strength and the Paracetamol won't for RLS anyway. X

[Scattypatty in reply to Pippins2]

That’s a very good idea I will definitely be asking him about that.

I did have my iron levels checked a while ago and it read just over 100 which he said was fine.

[Pippins2]

Has your GP tested your ferritin iron levels? If so ask for your actual number even if he says normal and post it on here x

[Bks429]

Hi Scattypatty: I am 70, just retired and got so depressed thinking - I absolutely cannot live like this! No sleep, etc! Righy now, for whatever reason I am almost symptom free! I tale .25 pamipexole (½ at 5pm and the other half at 7:30pm). At bedtime I take 300mg of gabapentin. What I think was my life saver, though, is drinking ‘Natural Calm’ around 5pm. It is a magnesium powder drink. I get it at the health food store but I’m sure you could find it online. Since I started drinking the magnesium I’ve been pretty good. The downside is stomach gas, looser stools, but I’ll take it! Good luck!!

[Scattypatty in reply to Bks429]

Well done you for finding something that seems to suit you. I have taken on board what you have said. I do take magnesium tablets but I will definitely look out for Natural Calm. Stay well

[long-legs]

Maybe you should see a sleep specialist, as well as a neurologist or RLS specialist. For my recent trip to East Africa I got a prescription from my neurologist for Carbidopa-Levodopa, 25-100 tablets, just for the trip, and it was great. I've never been able to sleep well on airplanes, even before RLS, but I slept some, and I wasn't uncomfortable, though my legs occasionally tingled a little. On a flight to New Zealand 5 years ago I was wandering the plane, looking for a spot to sit on the floor and stretch my legs. I'm 6 feet tall, so I got the seats beside the exit with extra leg room.

For what it's worth, I consider it an advantage that my husband sleeps through the night, since if I woke him when my legs got bad, or when I moved around or got up, and then he couldn't get back to sleep, he'd probably keep me awake. Mine doesn't snore, unless he has a cold, and snoring could be part of what keeps you awake. If he has sleep apnea, that could be dangerous for him. If he's just got post nasal drip, maybe he'd take a decongestant before bed, or an antihistamine or a saline nasal spray?

My own experience has been that if I take my meds in time for them to kick in before I go to bed, and stretch my calves at least 30 or 40 seconds right before bed, and if I can get to sleep soon, I'm okay. If I can't get to sleep the RLS starts to come on, and I'm doomed. It's also a problem if I wake in the night and can't get back to sleep. So I recommend pursuing everything anyone does to get themselves to sleep: white noise machine, ear plugs, aspirin or ibuprofen, dark curtains and shades, camomile tea, oil of peppermint, relaxation techniques, anything. If you wake to use the bathroom, that's another area to look into. Kegels, urologist, etc.

[Scattypatty in reply to long-legs]

I’ve taken notes of all the advice I get, I’m so grateful to everyone who takes the time and makes an effort to be helpful.

I’ve exaggerated about my husband storing, I’m just so jealous that he can be asleep about 5 mins after getting into bed and not wake up till morning. I have asked him if he would like to keep me company through the long night but he has declined the offer!!

I’m like you when going to bed, I must be really tired, if not I lay awake convincing myself that my legs will play up and they never cease to disappoint me.😱

Thanks for the recommendations

[long-legs]

I'll be thinking of you. I really hope you find something that helps.

[Scattypatty in reply to long-legs]

Thank you x

[long-legs]

I forgot to recommend a topical cream called Ropinerole. A friend with multiple autoimmune diseases, who has to use a mobility scooter recommended it to me, and it's herbal, if that matters to you. It's for pain, but it seems to help sometimes for RLS. I got it at Whole Foods, and Wegmans has it a little cheaper. I put it on my calves, sometimes my feet, when I've taken Ropinerole, but RLS is still bothering me. I also stretch my calves, sitting on the floor or bed with my legs spread at least 45 degrees, I lean forward and grab my feet, or use a belt to pull each foot toward me. I never stretch less than 30 seconds, and sometimes have to stretch as long as 2 minutes. Good luck.

[Poisonbabe27]

I take gabapentin 300mg at night and it stopped the RLS I was having. I had no side effects from the gabapentin except for a really good night sleep LOL. Try to have your doctor put you on gabapentin. If you are having issues with your doctor not listening to what you're suffering through then I suggest finding a doctor who gives a damn. Unfortunately I had to fire my doctor in order to find a good one who cared enough to stop my suffering. I know quite a few people who take gabapentin for RLS and it works amazingly for them. I hope this helps. I am so sorry you are suffering with this I know what a nightmare it can be.

[Scattypatty in reply to Poisonbabe27]

Thank you for your kind reply. That sounds promising,. I'm due to see the doctor soon, I think I need to try the Gabapentin it really seems to be my last resort so fingers crossed ......