Pregablin

[Whymelord]

Hi everyone, I'm hoping for help and guidance please I've been suffering from RLS for years,I've been prescribed different meds.with no great help or ease from any of them.A few months ago I was prescribed 75mgs pregablin, I take this a few hours before bedtime,I also take half dose of Pramipexole,my RLS is definitely eased which is great ,but, and this is a BIG but,I have terrible panic or anxiety attacks for the past month,feelings of dread and sadness. Never had these overwhelming of anxieties before,I took Pregablin reluctantly out of sheer desperation as my RLS was terrible.I want to go off it so want to know if any other sufferers having similar feelings taking Pregablin and what is the alternative, thankyou in anticipation.

[SueJohnson]

I believe I suggested you might want to try switching to gabapentin as some people find that the side effects that bother them on one don't bother them on the other. You can switch directly to 450 mg without weaning off the pregabalin. It's certainly worth a try since the pregabalin helps your RLS. HOWEVER although panic attacks can be a side effect of pregabalin usually side effects would occur soon after you started pregabalin, not after you had been on it a few months. Panic attacks and anxiety can occur from DAWS and anxiety can also be a side effect of pramipexole.

[SueJohnson]

Did you ever find out what your ferritin was since you were only told it was satisfactory?

[Whymelord in reply to SueJohnson]

Hi SueJohnson, thankyou soo much for replying, I just feel that something I'm taking has made me feel this way,I find it scary to be truthful. I'm taking nothing different recently .I have been reading up on information re.Pregabalin and while I'm aware of the Mayo clinic information, I can't find anywhere which says that this medication helps RLS but I read about side effects. I'm just feeling hopeless and despairing of finding anything suitable or even helpful.I haven't found out about my Ferritin level but I definitely intend to.

[SueJohnson in reply to Whymelord]

The Mayo Clinic Updated Algorithm on RLS says "Treatment should start with an alpha2-delta ligand (gabapentin, pregabalin, or gabapentin enacarbil)"

And it sure helps me and many others on this forum.

[Whymelord in reply to SueJohnson]

Thankyou Sue,I suppose I'm just doing a process of illumination hoping I can discover what and why am I feeling this Anxiety/Panic feeling. I have tried to stop the Pramipexole, I have halved the prescribed dose,now taking 0.09mg.at night.i will try to get off this as I know the damage it has done.I will take your advice and talk to my gp soon.The very fact that I can find advice and help so quickly on this forum helps me greatly.

[ChrisColumbus in reply to Whymelord]

While the NHS still largely clings on to dopamine agonists as treatments for RLS, even NICE now acknowledges that pregabalin and gabapentin can be used for RLS (if off label):

cks.nice.org.uk/topics/rest...

cks.nice.org.uk/topics/rest...

But like all treatments for almost anything, nothing works for everyone - and again, there can be side effects with almost all drugs, particularly in the early stages of taking.

[Whymelord in reply to ChrisColumbus]

Thankyou ChrisColumbus for replying, as I've said to SueJohnson I'm doing a process of elimination in the hope I will find if it is a med.thats causing these Anxiety/Panic episodes, will speak to my gp.👍

[BAK524]

I had horrible anxiety, panic attacks, and insomnia while on pregabalin. These symptoms all were worse as I slowly tapered off . Also tapering resulted in an increase in RLS, 24/7. I recommend that if you make adjustments with this medication, do it very gradually. I now take gabapentin and do not experience these extreme side effects.

[Whymelord in reply to BAK524]

Hi Fatniss thankyou for replying, oh I'm very glad you have found something that works without the awful side effects, I'm going to wean off Pregabalin, I was glad to hear that other sufferers besides me had these side effects and that getting of this med.helped,like all meds,it's finding the right one .

[TheDoDahMan]

Just my 2 cents: after experiencing feelings like yours, I was put on a low-dose opioid therapy and life is good again, sleeping 8-9 hours every night. Keep it in mind if all else fails.

[LFIT]

I also take pregabalin for RLS , started at 50mg now at 175 mg .I also had some of what you described , strangely mainly in the afternoon! I also founded it exarcerbated my most vulnerable feelings each time . In my case it takes six weeks for these side effects to wear off each time I alter the dose and it was much tougher on the earlier doses ie 50 to 100 . I went up very slow ie 25 mg every 6-7 weeks , hope it sorts it’s sorts itself out.

All the best

[Wiggler]

hi, I’ll also add my 10p! I take 50mg Pregabalin morning and lunch time, then 175mg at bed time. My psychiatrist is great and also put me on diazepam which I take low doses of. 2mg morning and lunch & 5mg with bedtime dose. Works a treat for the last 1.5yrs with minimal side effects. My be worth seeing if you can get something low level to counter the anxiety and stick to the Pregabalin.

[Whymelord in reply to Wiggler]

Hi Wiggler thankyou for replying, it's great that you are getting ease and a normal life with this medication, my gp prescribed an anxiety tab.Buspirone Hydrochloride 5mg.which I take twice a day,only began taking these yesterday so not sure if they will help.im hoping my gp will advise me as I'm on other meds.for other things.

[CYF66]

Hi Whymelord, hi all of you, I also have RLS since years, but before the end last year, it was something that happened once in a while, and as I know, there is no cure really for it, I had never before looked for a doctor to talk about that.

Since Dezember 2022 I started to have terrible attacks of the legs in the night, which did not let me sleep at all. Then, this attacks got worse, they appeared also during the day and sometimes in the arms. I had no energy anymore for whatever. I asked then my doctor for some medicament and she gave me Pregabalin. I also made a blood test and my iron is perfect, BUT, the amount of VITAMIN D in my blood was TOO MUCH HIGH. Because of the pandemie, I increased the quantity of vitamin D I use to take to improve the imunity. For sure it helped. Since then, I did not get cold or grippe anymore. I decided NOT TO TAKE WHAT THEY CALL A VACINE. The pandemie worst time passed, but I fid not stop having a higher quantity of vitamin D. I am telling you this story, because, too much vitamis, without breaks for the bodies, can make something bad. I SUSPECT, that maybe, the excess of the vitamin D in my body, triggered this ‚latent RLS problem‘ to get worse. Maybe.

Well, I stopped having any vitamin D since I saw my blood test and started having 25 mg of Pregabalin. It did not help abd I increased it to 50 mg. Ut also did not help at all, and I doubled it to 100 mg. I could finally get some sleep, but with some interruptions in the night.

My doctor said, I should also take 25 mg. in the morning, extra the 100 mg. in the night ‚to balance‘ (I don‘t what). But I followed her orientation. I started to feel deasy every day, but really very much deasy. Whenever I lifted from a chair, I had that feeling, that I had to hold myself first at the table, wait a minute to then lift the head. Horrible. I also felt very tired and sleepy during the day. In other words, the following days continued to be completely unproductive. I decided to cut this ‚extra 25 mg. in the morning and now it‘s better. I feel more awake, much less deasy and I can sleep with the 100 mg. of Pregabalin. Some nights, maybe because of stress, my legs jump a bit during the night, and wake me up, but it‘s far of being, what it was before.

I am the time that thinks, the less mecicaments we take, the better. So maybe, you could really try to get rid of this second medicament, Pramipexoli. Two differents medicaments to sleep, to control the spontaneous movement of the legs, does not seem to be good.

Paralel to the Pregabalin, I started to make a treatment with Acupunctur. I had now about 6 sessions and in the last one, I did not feel good. Now I am starting to have a prescribed tea with especial herbs abd this ‚should also help‘ after 1 week. The result, if the treatment helps my RLS, I can tell you later in this Forum.

I wish good health and all the best,

Cynthia

[Whymelord in reply to CYF66]

Hi CYF66,thankyou for replying, I do agree that two meds.are not helping with my RLS,especially the Pramipexole.i did halve the prescribed dose intending to stop it completely but it is hard.I don't want to increase the doses of any meds if I can help it,I'm going to find out what my Ferritin level is and if necessary take some Gentle Iron,also ask for Gababentin in the hope that it won't have the side effects that I'm experiencing with Pregabalin, thanks again for your good information.

[SueJohnson in reply to Whymelord]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, 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, 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, using a standing desk, playing and listening to music, meditation, creative hobbies and yoga.

[mkbroomy in reply to SueJohnson]

Fibrofog would prevent me from remembering this healthy list! 🙃

[SueJohnson in reply to mkbroomy]

Then print it out.

😀

[SueJohnson in reply to mkbroomy]

Do you have RLS as well as Fibromyalgia?

[CYF66 in reply to Whymelord]

Hi Whymelord, I think, that when we want to fix a problem as the RLS we all here suffer of, we can‘t expect to fix it immediately with these drugs. We should try ONE medicament (Pregabalin OR Gebapentin) and start with a low dose. The way I did. If it does not help, increase slowly the dose. But try at least two or three nights with the lower doses, that your body recognizes, that it should react to something new you are putting in. Maybe your bad reactions fo not come from the Pregabalin, but from the Pramipexole. As I suggested, try to not take this second medicament for at least one week and see if your bad symptons persist. After all, what is this second medicament for, according to your doctor?

Another thing that has been helping to sleep better is a simple water rubber bag, which can be bought in a supermarket. Before I go to the bed, I fill it out with hot water and put it down the bec, under the blankets, to put my leg on. Whenever I feel that one of my legs has the impulse of moving, I put it on the water bag and it releases this sympton. It helps a lot. I am thinking of buying a second water bag. Try it out.

Wishing you good luck with the new tryings. In the case of RLS, we have to be the doctors of ourselves and primarely observe our bodied, how does it react with any change we do.

Have a nice day.

[SueJohnson in reply to CYF66]

It is ridiculous that the doctor wanted to take it in the daytime, as there is no reason unless you have symptoms during the day as well. If you are only taking 100 mg which is a low dose and you sometimes have RLS, you could increase it by 25 mg every couple of days to find the dose that works for you, and probably just one increase will do it. According to the Mayo Clinic Updated Algorithm for RLS the usual effective dose is 200 to 300 mg.

[CYF66 in reply to SueJohnson]

Good morning Sue, I was having also RLS during the day, especially in the morning, but in fact, I am not sure if I commented that to my doctor. Well, it passed quite soon the attaques during the day and now, after a while, either because the 100 mg of Pregabalin, or because the acupuntur, I have been slleeping better. This night I slept like an angel, I neither woke up because of the legs. I am not going to increase the dose. I will continue like that for some weeks more and then I will try to sleep without any medicament. Maybe my body re-learnt in between that everything is all right and my legs should be calm during the night. 😊

[SueJohnson in reply to CYF66]

If you try to sleep without medication, you need to reduce the pregabalin very slowly like about 25 mg every 2 weeks or you will have withdrawal symptoms.

[SueJohnson in reply to CYF66]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

[CYF66 in reply to SueJohnson]

Yes, my iron (ferritin) is perfect. In fact, the general result of my blood test was perfect, except for the vitamin D, that it was (or still is) very much high. The next blood test I will do it will be in about 2 weeks. I will pay attention to not have any single vitamin two or three days before to see if the result changes. Thank you for the tips!

Have a nice day.

Cynthia

[SueJohnson in reply to CYF66]

When you say perfect, I assume you mean it is over 100?

[CYF66 in reply to SueJohnson]

Yes, much above! Exactly 229

[BocaMom]

For me, Gabapentin has way less side effects than pregabalin. And pregabalin was a bear to come off of too, even at a relatively low dose of 75 mgs.

[Whymelord in reply to BocaMom]

Hi BocaMom,thankyou for your reply, good to know that other sufferers have experienced similar effects and to know that there maybe an alternative med.Isnt it unbelievable that the medical world doesn't realise how this horrendous syndrome is affecting sufferers world wide,my gp's reaction is something like,"oh I know it must be terrible".whatever would we do without this forum.