Hi I’m new here and feeling desperate been on Pregabalin for 15 years symptoms breaking through 4 years ago I was virtually on top dose. My GP was unsupportive when I asked to see a consultant again was rude and basically blamed me for my condition for not being responsive to mindfulness!! Took me 2 more years to go back to a different GP got referral for nhs consultant who only sent letter back saying come off Pregabalin with no advice how I was going to do that. Went private saw London neorologisy August last year 2021 who basically said same, but put me on Pregabalin to help. Withdrawing over nearly a year been dreadful with crisis of sleeplessness and tormented feeling happening every tablet I went down until I stopped last one was so bad I went back on 2 tablets again symptoms persisted till April this year when I was asked to come off last two Pregabalin tablets. Now on Rotigotine patches first 1 mg 2mg then top dose 3mg within few weeks. Still on Pregabalin 150 mg.
After all this found out I was very low in iron only 19! Consultand wants me to go for iron infusion I’m waiting but been told likely September in meantime I’m on iron tablets. He suggests I come of Pregabalin completely and lowered patches to 2 mg. This has sent me into another crisis and I feel so lonely and hopeless as I feel no one understands how this can be worse than pain tbe torment and feeling there is nothing that will help that doesn’t cause horrible side effects. I have always had a fear of nausea and sickness as I usually pass out. I’m not sure how much my neorologist is up on RLS he’s in Top Doctors and it mentions he has RLS as a specialism. I’m beginning to think I’m going to be left like this. I’m nearly 72 a stained glass artist who previously loved life but it’s pretty miserable now and like others have said feel like life like this is not worth living.
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Pookie100
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Your doctor was remiss in not telling you to withdraw the pregabalin slowly. If you had done that you would have had no withdrawal symptoms. The only reason to reduce the Rotigotine patch is if it did not control your symptoms, or they came earlier in the day or they spread to other parts of the body. In that case you were suffering augmentation and need to come completely off the patch. To do that you want to get 1 mg patches, cut them in quarters and reduce your total dose by one quarter every two weeks or so, letting the increased symptoms settle before reducing more. You will suffer and towards the end may need a low dose opioid temporarily. In fact if the pregabalin didn't work, you may want to take a low dose opioid to control your symptoms. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at
Https://mayoclinicproceedings.org/a... the iron If your doctor doesn't want to prescribe opioids, print out the section of that article on it and show it to him/her. On the iron take 2 tablets of 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron.
Oh Pookie,Like most people with RLS, you have been treated abysmally and negligently by both your GP and your neurologist. It's clear that neither know anything about RLS or they would be familiar with the Mayo algorithm.
An iron infusion should have been given before you were prescribed Rotigitone.
Pregabalin should be reduced by one quarter of a 25mg pill every 2 weeks. That way you don't get withdrawal symptoms.
150mg is not the top dose for RLS. 300mg is.
So first get the infusion ( Injectafer is the best formula for RLS). In the meantime stay on pregabalin but reduce the Rotigitone patch as advised by Sue.
I suspect your RLS will improve quickly after the infusion and the pregabalin will then continue to be effective at 150mg.
Did the neurologist warn you about Impulse Control Disorder and Augmentation before prescribing the patch? If not, you could consider legal action.
I second Joolsg. First wait for the iron infusion. And then slowly reduce. Rotigotine first, then pregabalin. Both slowly. If the combi of pregabalin and rotigotine is working more or less now, don't yet start the reduction. It may be far easier once you've got the iron infusion.
Read the paper with the updated guidelines in the link provided by Sue. You'll learn a lit about RLS and its treatment. This will help you to make better informed decision with your doctors. I really hope the iron will do the trick for you. Make sure your levels are retested some 2-3 months after the infusion. And again half to one year later to see whether they remain at their post-infusion level.
All advice above is good. Pregabalin doesn't always work and can have side effects but it may be better to stay on a reasonable dose while looking at alternatives and it should help with the anxiety and stress. Iron is simplest and most straightforward therapy, normally with fewest complications although not everyone benefits (~60% success rate). Dopamine agonists help initially but often reduce in effectiveness which leads to increased doses and eventually augmentation which is worse, plus there is evidence that they have long lasting effects which reduce the ability of other treatments to help. However for short term relief as above it may also be worth continuing DAs while you get other treatments. Making changes slowly is very important to avoid negative withdrawal symptoms which can make it very difficult to decide on the right path and undermine your decision making. Good luck.
So sorry to read about your suffering and the gross neglect by these “ professionals.” The advice provided here is excellent. You are not alone. Most of us on this site can relate to your misery. I just want to reiterate what was suggested above. Take your time reducing and go very slow!! If your withdraw symptoms are too severe, it’s ok to go back to the prior dose for awhile. An iron infusion most likely will help you. Try to be good to yourself. Good luck and please keep us posted!
Your story is similar to mine. I even told the neurologist I was diagnosed anemic! He still didn't check my iron. I ended up getting an infusion, it made everything 100 times better. That would be my priority. It was the best damn thing for my RLS ever. It saved me.
I was on pregabalin for a couple years after my infusion. The infusion helps tremendously, it does not cure RLS. It also will give you a running start on taking oral iron. You would have to supplement for years to get the amount of iron in an infusion. I maintain my iron with supplements. Coming off of pregablin was difficult, controlling my body temperature and sleep issues.
The good news I no longer take pregabalin, gabapentin or any DA drug. I do take Dipyridamole. It is a blood thinner, but it is also an ent1/ent2 inhibitor. It makes the feelings of RLS go away almost 100%, some nights it is 100%. Long term low iron stores like you have created issues in our brains. The Dipyridamole blocks the ent1 receptors and increases intercellular adenosine. That stops the feelings of RLS and the jerks/tics/spasms that come with it.
I take 225mg a night. The side effects of Dipyridamole are nothing compared to pregabalin and don't even get me started on Dopamine Agonist Drugs. Since Dipyridamole was initially used as a blood thinner, this maybe a benefit or not.
Congratulations, they have found the cause of your RLS. Did your doctors do a morning fasted full iron panel? There are 4 numbers, ferritin, Serum Iron, TIBC and Transferrin Saturation Percentage. Ferritin should be above 100. TSP should be above 20%. I think it is important to know both numbers.
At least the Doctors will be treating the cause and not the symptoms. Good Luck!
Thank you so much for all the kind and knowledgeable reply’s from everybody, when I’m feeling better I will reply to you all. I hope you are all coping and keeping well you have made me feel I’m not alone love Sandy
You are not alone, Sandy, and you will find a way through this to enjoy life again. The advice you have received in the replies is spot on. It is the wonderful thing about this site that posts like yours and the responses they elicit make us all feel connected and supported.
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