vaccine and RLS

[Canterberry]

in my late teens, I sometimes had a strange uncomfortable feeling in my legs if I sat for to long. After getting three vaccine shots, I developed severe RLS. It started with the same strange feeling and got progressively worse. I also developed a swollen lymph node in my neck, which I still have, and I was diagnosed with having mono and just recently I developed shingles. All of this since I got the vaccines. I am 74 years old and suffer from RLS every single night!

I am seriously considering not getting another booster. Feelings?

[ChrisColumbus]

In my personal experience most vaccinations have brought no adverse effects, although my recent (fourth) vaccination (which was Pfizer) seemed to briefly exacerbate RLS for a day or two. But we're all potentially different.

Lots of other things have triggered my RLS: statins, antihistamines, too much caffeine, too much sugar, sweeteners in diet drinks, too little magnesium, too much exercise, too little exercise... In some cases I've consequently had RLS every night for months. (For many others, low iron is the major factor).

Avoiding such things reduces my RLS to occasional and relatively mild - so that I could notice that a Pfizer booster triggered it for a day or two.

[ChrisColumbus in reply to ChrisColumbus]

All sorts of medications trigger/exacerbate RLS: what are you on?

[Canterberry in reply to ChrisColumbus]

For my RLS I take Gabapentin. I take Wellbutrin and blood pressure medicine Nebivolol. I only started taking Wellbutrin and Nebivolol a few months ago.

[ChrisColumbus in reply to Canterberry]

As far as I know all of those should be OK, and I can see that Sue J gave you advice on Gabapentin some 6 months ago which you've presumably followed... Hopefully you're not the diet drinks/processed food addict that I was, so I'm afraid that I'm not going to be much help: here's hoping that someone else will come up with something. Good luck!

PS: have you had a full iron panel blood test recently, and if so what was your serum ferritin level (actual number, not a doctor's uninformed 'normal')

[Canterberry in reply to ChrisColumbus]

Thank you you Chris. My ferritin is actually high and others are all good.

[SueJohnson in reply to ChrisColumbus]

Nebivolol is a beta blocker which makes RLS worse for many.

[ChrisColumbus in reply to SueJohnson]

Thanks Sue: good to know as I'd not seen negative reports against Nebivolol, but on the other hand one against Propranol. And I'd missed somehow that beta blockers in general were an issue. But you're the RLS Oracle! 😉

[SueJohnson in reply to Canterberry]

Nebivolol is a beta blocker which makes RLS worse for many. A safe substitute is propranolol (Inderal, Hemangeol, InnoPran).

[SueJohnson]

Vaccines can make RLS worse but that usually goes away after a few days. A swollen lymph node can be a result of long haul covid but unlikely a result of a vaccine and mono and shingles definitely have nothing to do with vaccines. It might just be a coincidence that your RLS got worse after the vaccine or it might have nudged it worse so it didn't get better afterwards. I would still get the vaccine. What medicines are you taking for your RLS? I'm really sorry about the shingles as that can be miserable. My cousin had it but started on antiviral medicine right away and that helped a lot so you might ask your doctor about it if you are not already taking it. And once recovered be sure to get the shot for it as you can get it again.

[Canterberry in reply to SueJohnson]

Dr told me vaccine could activate the Ebstein Barr in my body and the swollen node was due to that. I never had COVID that I know of, not even a sniffle. I’m done with the Shingles. It was a very mild case and I got in an antiviral immediately. I’m taking 1200 mg gabapentin for the RLS

[SueJohnson in reply to Canterberry]

Ah - that explains both the mono and the swollen lymph node. I'm glad you are over the shingles and it was mild. You might want to increase the gabapentin. I assume you are taking 600 mg 1 to 2 hours before bed and the other 600 mg 4 hours before bed as it is not well absorbed above 600 mg. To increase it add 100 mg every couple of days 6 hours before bed until you find the dose that controls your RLS. If that is too inconvenient you could switch to pregabalin which is basically the same thing except you don't need to divide the doses. Divide the gabapentin dose by 6 to get the pregabalin dose and increase it by 25 mg every couple of days.

[Canterberry in reply to SueJohnson]

Thank you Sue. You r a blessing to all of us!

[bookish in reply to Canterberry]

It is entirely up to you what you chose to do about vaccine/no vaccine, so I'm not offering a view on that. What I would say is that I disagree that mono and shingles can have nothing to do with the vaccine (or any vaccine). Many viruses and vaccines can reactivate EBV and shingles, and this particular vaccine seems to be triggering throiditis in some (as well as the former) and also affecting the one carbon cycle so potentially disrupting your B12/folate processing (not necessarily showing as low serum for either). (Incidentally, Gabapentin is one of several drugs which may deplete nutrients including B vits wa.kaiserpermanente.org/kba.... I was on it for approx 12 years for an incorrectly diagnosed nerve problem and am now happily off it, using magnesium and B vits and RLS free.) So my suggestion would be serum testing first, just in case of obvious deficiency, but also active B12, homocysteine and MMA. If not possible, or no one will do them, try B12 (not cyanocobalamin) but be aware that supplementing will skew the results and make future testing very difficult. Best wishes

[SueJohnson in reply to bookish]

I would be interested in the article, but when I click on it - it just takes me to their main website.

[bookish in reply to SueJohnson]

Annoying, sorry. If you search for Kaiser Gabapentin drug information you should be able to find the page. Cheers

[SueJohnson in reply to bookish]

OK - I found it. But it didn't say anything about depleting nutrients including B vitamins.

[bookish in reply to SueJohnson]

The page that I am looking at suggests that there may (emphasise may) be depletion of biotin, calcium, zinc/copper, vit A, B6, folic acid, l-carnitine, B12, D and K. Worth considering for anyone already at risk for low nutrients, if taking for some time (as I was). Cheers

[SueJohnson in reply to bookish]

Do you have the https address or is it the same as the one you posted before?

[bookish in reply to SueJohnson]

The link is the same as the one I posted before but it seems to be losing something in the HU redirect and I can't work out what, sorry. When I Google Kaiser gabapentin drug information I get two results - one the 'healthy' drug encyclopedia, about the 100mg capsule and the other the wa 'kbase' topic drug information page (which is the one you are after, and very useful as you can search for other medications, which the main site says they have no information about).

[SueJohnson in reply to bookish]

OK found it - thank you

[Munroist]

I’d have the vaccine. Of the three I’ve had, two made no difference and after the first one I had one of the best nights ever, slept straight through! Some people reported similar experiences, others reported worse sleep so maybe there’s an effect from the vaccine but we react differently. Interestingly I had 3 pretty good nights sleep when I actually caught COVID.

[Lucyliu101]

Hi, Canterberry! I'm 64 years young and I only received one vaccine 2 years ago. I have NEVER gotten the Covid-19 virus. Me, personally, will never get one of the vaccines again. I didn't feel well at all. I keep reading horrible stories from people that received the vaccines. My protection is given to me by the King of Kings...our Heavenly Father!

[Hidden]

We do know the long term effects of Covid however. mayoclinic.org/diseases-con...

[Hidden]

Time has told the long term effects of the MRNA injections. You have a nice day too.henryford.com/blog/2022/02/....

[Hidden]

Canterbury, this patient had a similar reaction to the vaccine as yourself. Her eventual treatment (that seemed to do the trick) might be something you want to discuss with your doctor. shmabstracts.org/abstract/a...

[Canterberry in reply to Hidden]

Than You. I will certainly discuss this with my doctor.