4 weeks since first taking it, I'm on 300mg per day and with no real effect of stopping my symptoms. I have Rls all the time and even with this new med when I rest the symptom starts within 5 to 10 mins. I have put on weight since taking it and because my colestral was high I started to diet and have since joined a gym. I also have noticed my libido has not functioned well and I have suffered with a real balance issue.
My question is I can not get to see my doctor for 3 months if there a solution to my misery health at the moment?
Yours desperately
Veneer
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VENEER
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Cannabis which Joolsg can tell you how to get but it will take a month. DickJones mentioned CBD oil but don't know how you get that. I believe there is a low dose codeine OTC. Others will chime in on these I am sure.
Or you could go private to get an appointment sooner for a low dose opioid,
Has it been at least 3 weeks since you started the pregabalin? Also if I remember you are still on ropinirole and it won't work fully until you have been off it for a few weeks. After that you can increase the pregabalin up to 450 mg but if that gives you side effects or doesn't work after you have been off ropinirole and your symptoms have settled then you will need to come off it. To avoid withdrawal effects reduce by 25 mg every 2 weeks and you won't have any. You may be able to reduce faster since you haven't been on it very long.
I've never heard of a 3 month wait to see a GP in the UK. Where are you?If you can afford it, pay to see a Neurologist or Sleep doctor. It sounds as though you may need a switch to low dose opioids.
Pregabalin causes dizziness and weight gain. Watch what you're eating as it increases appetite. The dizziness and brain fog issues tend to settle after 2 or 3 months.
If you can afford it, medical cannabis is available from several private cannabis clinics but it will take around a month to go through the screening process and get the prescription sent to you. Try Lyphe or Sapphire clinics..Sapphire is fastest.
hello veneer, I had exactly the same side effects on 300 pregabalin - the weight piled on and I am still carrying it - my balance was shot away - I didn’t eat any more because I log all my food - so I don’t believe it was increased appetite - more my whole body slowed down.
I have since been on 150 mg pregabalin and combined it with other medication - initially cocodamol which worked well for quite a while and then a small amount of clonozapan as well - that combination worked for about a year so could give you some relief. Also your Dr is more likely to let you try cocodomol before other opiates.
Also if you still have withdrawal from the roprinirole that’s probably why you have constant symptoms - you may have come off of it too quickly - these things take ages to settle down and the pregabalin won’t work whilst your body is still reacting to not getting the roprinirole.
Anyway good luck! I agree go back to your Dr and ask for something else or another combination of drugs. Having symptoms all the time is horrific and I think most of us who have been there would agree you need some relief
I have just started taking Pregabalin so I’m going to tell you my experience with all this and hopefully the army of experts (they saved my sanity) will comment and you can take some pointers away.
I’m about a week in and only take 75mg. I am finding that I need to experiment with the time I take the medication because that will determine how effective it is with me. Despite the medication truly being wonderful for RLS, insomnia is still hanging around.
When chronic, I take low dose opioids. I haven’t noticed any immediate side effects other than early morning grogginess but that soon disappeared.
I agree with others about iron checks. I had a full iron test in UK looking at ferritin level and TSAT levels. My results were really low. According to the information provided on this forum, ferritin levels should be 100 and I’m at 54.
Iron infusions are hard to come by in UK. GP Will probably advise oral iron supplements which may or may not work. Ask for another check in 3 months. I have been referred to the sleep disorder clinic in Leicester. If you go on the sleep apnea website, there is a list of sleep clinics. Some focus on respiratory issues but others look at a range of sleep disorders including RLS.
I am in the UK, on the advice of a private consultation my GP agreed to an iron infusion and a low dose opiod. Pregabalin did nothing for me. You will probably have to be firm. Oxycontin, slow release works very well.
Sorry to hear about your situation, it's hell, I know.I had the same problems with Pregablon and Gabapentin. I was given oxycodone for pain for another illness. I needed an increase to cope with RL, but still low dose. Up to 30mg per day. 5mg, as recommended by Mayo Algorithm. It helps a lot.
This doesn't help you now, I know. I started to take Gentle iron, 40mg with Vitamin C at night before bed, on an empty stomach. It also helps. I use Magnesium oil too, but a few hours before Iron supplements.
Sue's suggestion to try opioids is probably your best bet, if you can see a doctor earlier than three months.
I also avoid sugar, and refined carbs, as much as I can. They are both triggers for me, especially sugar later in the day. I'm not always able to resist, being human, but I pay for it.
I hope you can get something soon. My best to you.
I'm on pregabalin combined with codeine phosphate which gives a little relief and fully understand all your side effects the combination isn't great by no means but I'm not climbing the wallscas I once was
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