CGRP Inhibitors and RLS

[coldfeet7]

I am looking for a migraine prophylactic that will not aggravate RLS. I can't handle the side-effects of Topamax and bradycardia keeps the Dr. from increasing my beta blocker dosage. Several here have pointed out how anti-depressants typical make RLS worse and I've read some articles that indicate they are only marginally helpful for preventing migraines.

So.... has anyone read anything or have personal experience using CGRP Inhibitors to see what it does to RLS? The costs are going to be an issue, I know, but I don't even need to consider them if RLS is made worse with them.

[Cat00]

Do you mean Restless Leg Syndrome? I was on a couple of different CGRP's for 3 years and they did not give me RLS but I've only had when it when I was pregnant in the past so I'm not a normal sufferer. What about Botox, I would have thought that would be very unlikely to provoke RLS?

[coldfeet7 in reply to Cat00]

Sorry, I thought I posted this in the RLS (Restless Leg Syndrome) forum. My Dr. didn't mention Botox.

[Cat00 in reply to coldfeet7]

If you're really worried about aggravating your RLS, which as a lifelong insomniac I would totally understand, botox is absorbed locally and so I'm sure would not effect your RLS. I had botox before the CGRP and now the CGRP has failed I'm back on again. The CGRP really aggravated my IBS unfortunately.

[coldfeet7 in reply to Cat00]

When you say CGRPO failed, do you mean it failed to reduce migraines or it failed because you couldn't take it due to the effects on your IBS?

Do you find substantial relief from botox?

[Cat00 in reply to coldfeet7]

I'm normally chronic so I have migraine generally between 15 and 20 days a month. When I eventually got Botox it halved my migraine severity and reduced the frequency to about 10 days a month. When Covid came along they had to stop the Botox because it involved close contact so they rushed through our access to the CGRP because we could self inject. The first year was fantastic, it worked better than Botox, but some of us were starting to notice our IBS was worsening. Initially we were told there was no connection, but now they accept that this is a side effect. The second year my CGRP started not working, I just had more and more migraines and the triptans were failing too so when my second year was up they switched me to a different CGRP but this failed also, so after 3 months on that one I'm back on the Botox now.

Although it ultimately didn't work for me I know for some people it has been a miracle drug, their migraines just vanished.

I don't know how bad your migraines are but for me it was worth the risk.

[coldfeet7 in reply to Cat00]

Your frequency is higher than mine by quite a bit. I take propanolol (10-mg bid) as a prophylactic but they can't up it due to my bradycardia.

What are some of the downsides of botox for you? How does the cost compare to CGRP?

[Cat00 in reply to coldfeet7]

I'd say the only downside of Botox is that you can get neck pain if they don't spread the injections out more in that area but since they've adapted my injection sites I've never had that problem. You can get dropey eyelids but that's only happened once to me in years and years of having Botox so I think the risk is pretty low.I find that the efficacy of Botox and CGRP to be roughly the same if you look at it over time. They both wax and wane.

I suspect the CGRP would always be worth trying just incase you happened to be one of those people it can be miraculous for. However I also think Botox is probably safer just because its not as complex.

I'm NHS so I dont pay for either of them but they would cost me thousands a year otherwise.

[Headache123]

well I don’t have rls…so don’t know on that one. I was on Botox for year and half and it helped to an extent but then I got droopy eye from the Botox and a now have long term probs with eyes muscles…. Very annoying and debilitating …

I then went onto a CGRP and saw little improvement after one month… and then suffered acute stomach pains and vomiting…. Was told go A&E…. It’s taken me over a year to start eating more again after losing masses weight… and now I am on daily laxatives due to consequences of severe constipation which has been put down to the CGRP…. I have IBS and was given different advice by different doctors as to whether start laxatives at same time as CGRP.. which I so wish I had done…..so now afraid todo Botox or CGRP… I have daily migraine and the only thing that is keeping the pain ata more tolerable level is medicinal cannabis…

Good Luck!