Pregabalin and Lyrica

[Mary1959]

Hi I've got a phone appointment with my g.p tomorrow to change my preventative medication. I've been on 75mg amitriptyline and propanolol for 30 years and they don't work anymore. I can't take topiramate, but I've read that Pregabalin and Lyrica tablets have given some sufferers, good results. I'd be grateful for any info on these. Thanks x

[Everywhere]

I’ve never had Lyrica / Pregabalin but had good results with Gabapentin 300 mg three times a day.

[Mary1959 in reply to Everywhere]

Thankyou for the info, I'll ask my g.p about that.

[Chleo11]

Hi. I was on Pregabalin for 2 years but had to come off because of fluid retention in the legs. It was the only medication that seemed to help, at least noticeably. The issue most people have is hair loss and weight gain. Never really put on weight throughout my life but I did with Pregabalin. Took me several months after stopping to start shedding some weight and have my hair getting thicker again. But then again, if it helps, go for it. It would be worth it.

[Mary1959 in reply to Chleo11]

Hi thankyou for your reply, if my g.p does give it me, I guess the weight gain is a lot better than migrane. x

[Bobherts]

Hello Mary Combination of propranolol 40mg and Pregabalin started at 75mg now 200mg have worked for the the last 4 years.

Still get the odd migraine with auru, but these definitely help.

Weight gain yes but I do use them as the excuse for my weight .

[Mary1959 in reply to Bobherts]

Thankyou for your reply. Glad you are finding relief from them, I hope I do too.

[ChrissieMons]

Pregabalin and gabapentin are much the same, but people often prefer one to the other. I think the side effects vary and depend on the amount you take. I take them for anxiety, but I'm trying to wean myself off them. My migraines are usually triggered by stress, and I have to find other ways of managing it, I think.

[Mary1959 in reply to ChrissieMons]

Thankyou for your reply, I'm a very anxious person and have just come off fluoxitine. I'm struggling to get anywhere with my g.p, it's just hopeless trying to get a face to face appointment, it's all text message s and email. Hope you're soon feeling better x

[Cat00]

I've been all of the drugs mentioned, Amitriptyline, Pregablin, Gabapentin, Propranolol, Fluoxitine and Topirimate. Pregablin made me put on weight incredibly quickly and didn't really help pain, Gabapentin was more effective than Pregablin for pain and had less effect on my weight so I stayed on that for longer. Propranolol and Topirimate didn't do much and I've been on Amitriptyline for 15 years, doesn't help pain but really helps my sleep. I was on fluoxitine for years didn't think it was helping so took myself off it and then more or less had a nervous breakdown but didn't go back on it for reasons i cant fathom now. Often wonder if I should go back on it. Ultimately I've been on Botox and the CGRP injections for the last 7ish years for chronic migraines and now Hemicrania Continua.

[Mary1959 in reply to Cat00]

Sorry to hear all you've suffered. I'm in the middle of an argument with my g.p. The amitryptiline and propanolol don't work anymore, but my g.p says he won't prescribe anything else, until I've seen neurologist, but that's 32 week wait, and I can't afford to go private. He also said, he's cutting down my naratryptan and sumatryptan, as I take too many, but I told him, that's why I want to try another preventative!! He's talking to me through text message as I don't warrant a face to face appointment. I've told him, unless you suffer with this pain, you just don't understand. As you say, it causes depression, anxiety and makes you want to just stay in bed hugging a bit water bottle. take care x

[Cat00 in reply to Mary1959]

It took me over 10 years to get a doctor that even believed in chronic migraine so I completely understand your pain. I would, if I were you, write a letter to the surgery manager and complain about your lack of treatment. I've been driven mad by migraine pain, I've had them for 30 years and they come in cycles of bad and good. I finally have a wonderful neurologist but sadly my migraines seem to be quite untreatable at the moment. However knowing someone takes them seriously makes a huge difference. At least I know I'm having access to the latest treatments and that all could be done is being done. I couldn't afford to go private either, my treatment costs thousands a month and I'm unable to work.I'm not good on phones and really struggle with zoom, I hate what covid has done to GP practice. Write a letter they can't ignore letters.

[Mary1959 in reply to Cat00]

I feel for you Cat, I've also had them for 30 years or more, I'm just hoping the neurologist is more sympathetic towards me. The g.p just isn't interested, but I will do as you suggested and write to practice manager. I get tongue tied on the phone and never say what I'm feeling, only my family know what I've suffered over the years. I thought the menopause might make it better but it hasnt. I hope you manage to get some good days x

[Cat00 in reply to Mary1959]

You sound just like me, I can't convey the gravitas of the situation on a phone or advocate for myself really. I was told things might improve for me after the menopause but so far this has been one of the worst years I've had, I'm 46. Women in my family tend to hit menopause late as we hit puberty late but I've heard perimenopause can gone on for a decade so who knows. I have a lot of other things wrong with me so it all gets lost in the noise really.Although yesterday I was given an urgent neurology appointment which they then cancelled this morning before phoning me at 4 giving me another urgent appointment so bit of an emotional roller coaster migraine wise the last couple of days...

[Mary1959 in reply to Cat00]

On fear cat, hope you get sorted. I'm 63 but I went through menopause at 47. It's hard to stick up for yourself when you're feeling low and in pain. Let me know how you get on with neurology. I've sent an email of complaint to practice manager at g.ps. Good luck and take care x

[Cat00 in reply to Mary1959]

Will do, good luck with the letter!

[Mary1959 in reply to Cat00]

Thanks

[Cat00 in reply to Mary1959]

By the way the neurologist said she might try a nerve block ontop of the botox even though it has never worked on me in the past just bc it's worth a try.She also said in the autumn NICE will be looking at 2 CGRP drugs, an infusion and a small molecule CGRP. The Rimegepant is the small molecule one, it can leave your body in 2 days. So if NICE ok it for use with chronic migraine she could try me on that and if my bladder doesn't get worse she could give me the infusion. But obviously that's all months away at the moment but there's hope at least.

[Mary1959 in reply to Cat00]

Good luck, hope the world has started to notice us migraine sufferers at last!

[Maryking in reply to Cat00]

how long have you been on CGRP injections? I have been on them a year with fantastic success and mistakenly thought that that I could come off them and the migraine would be gone. My neurologist said that’s isn’t the case and there isn’t enough of a data base to ascertain how long people have stayed on them.

[Cat00 in reply to Maryking]

I was on Aimovig for 2 years and Ajovy for 2 months. My neurologists always make me go without afterwards to see if they return, it's their policy with botox too. It drives me crazy bc I always nosedive afterwards. So I'd be happier with your neurologist than mine in that respect! My first year was also great but the second year didn't work that well so she tried the Ajovy but that also failed so I went back Botox. Then I've had the worst 6 months I've ever had, in June I had migraine every single day. I've had 3 rounds of botox and I was steadily getting worse. It maybe a reaction to not having the CGRP in my system as it takes 5 months to leave your body and it was at that point I started getting worse.

The trouble is the CGRP made my IBS worse and may have given me the bladder problems I starting having. I'd be very nervous about going back on the CGRP now for that reason.

I asked my neurologist about whether there was any data around CGRP and bladder problems bc the USA has had CGRP'S for years before us and she said there wasn't any data she knew of and that they only know what they look for. I've never heard that once you started you have to remain on it though?

[Maryking in reply to Cat00]

I need to find out more about this - Perhaps I'll enquire with the migraine trust. I'm so happy that Ajovy is working for me with no adverse side effects after 35 years of misery. I'm living my best life at the minute. But I don't know how long I can stay on it before it stops being effective . Thank you for your reply. I moved to Wales and have for the first time ever been treated seriously by a GP and I have a brilliant neurologist. He assures me that there are plenty other treatments (including botox) if in the future I need them. I wonder is your reaction to coming off the CGRP worse than the bladder problems....Sounds horrendous.

[Cat00 in reply to Maryking]

I've been on at least 15 different drugs/treatments over the years. As far as I know there are 4 CGRP's available at the moment and 2 pending review from NICE. Gepants are apparently available for acute treatments for episodic migraines, although I haven't seen them available on the NHS yet. There are more in the works, I hope some of them will help me! I'm so glad you are having a good time on them, a break for you maybe the new normal. My neurologist said that for some of her patients they have been miraculous so fingers crossed for the future!

[Cetkat]

I found that the SNRI Prestiq (updated Effexor) helped my migraines - it was the only psych med that did, and it made a big difference to mine. Lyrica is considered stronger than Gabapentin, but both are more for neuropathic pain. I'm on Lyrica.. as far as I can tell, it has no affect on my migraines. Still, it couldn't hurt to try. My migraine management now is Botox injections and the subcutaneous injection (think epi-pen) Aimovig. I HIGHLY recommend the Aimovig if you can get it.

[Cara71 in reply to Cetkat]

hi are you referring to venlaflaxine when you mention Effexor? I tried it a few days but had side effects of nausea and insomnia but think I need to try it again as nothing else has helped not even the CGRPs. I'm chronic.

[Cetkat in reply to Cara71]

Yes, venlaflaxine is Effexor's generic name. Prestiq is also called Desvenlafaxine. When the patent for psych drugs run out, the company often uses the active part of the drug, reformulates it, and puts out an updated version - which is then patented and generics cannot be made until it runs out.

It often does create different responses/side effects/etc. Effexor didn't do anything at all for my migraines whereas, surprisingly, the Pristiq did. That's why I recommended it. It also doesn't have the brain zaps many people report having with Effexor. Personally, I didn't get them.. but I'm in the minority.

When you try a psych drug, you should definitely expect start up side effects like you mentioned. Often, they go away after a few weeks to a month.

If the nausea is bad, you could ask for Zofran (odansateon) to help get you through it.

Here's some more info. One way to tell that this is reformulated Effexor is that it mentions not to take it if you are allergic to that med specifically.

(drugs.com/pristiq.html)

[Tazman23]

I’d suggest go for the latest drugs designed specifically for migraine like newly NICE licensed Rimegepant , a CGPT blocker that has been transformative for many sufferers ! Pressure your GP to prescribe it you deserve some relief

I believe you can also go through migraine trust private consultation to get it if you have the funds , not sure if pricing but may be a good investment!

Good luck !

[Mary1959 in reply to Tazman23]

I'm speaking to my g.p tomorrow and I'm going to ask about other preventatives, as I've been on same 2 for 30 years and they don't work anymore. It's like getting blood out of a stone, getting stuff from my g.p, so I doubt she will try me on the new wonder drugs.Thanks for your advice, take care

[Tazman23 in reply to Mary1959]

thanks and remember who is in charge is YOU , the patient , and if necessary you can make a complaint to your gp practice manager if he / she will not assist you ! You can also complain to the Gen Medical Council as a last resort, I’m sure your GP will assist immediately if you ask ‘how do I file a complaint’ as you are not helping me … or just change your GP

Otherwise consult a gp migraine specialist privately, you deserve better

Good luck !

[Mary1959 in reply to Tazman23]

Thankyou x