Migraine help, I'm desperate - botox or topiramate?

[doingmyheadinn]

Not quite sure why I'm posting, partly for advice, partly for sympathy! I've had migraines since I was a teenager, generally only for a day or two before my period, later in my 30s also mid-cycle/ovulation time. I'm 44 now and they've now spiralled out of control and what was only 1-2 days is now 7-10 days 2x per month and I'm just in agony. Many days I manage to grit my teeth and work through but it's really affecting my quality of life, ability to parent, ability to be a spouse. I do all of the right things (good sleep, no caffeine, no alcohol, no overmedication, etc.) so I am feeling quite desperate.

I'm under the care of a neurologist who started me on candesartan which worked for a bit but is now inadequate and I couldn't tolerate high doses. Same for amitryptilline. I've been put forward for Botox but that can't start for two months due to holiday schedules. I have been considering Topirimate in the meantime but neurologist says that should also have a good trial of at least 6 months before we decide whether it works. The CGRP inhibitors will not be offered until I've tried everything else. The neurologist said the pattern of headaches fits with peri-menopause but I am absolutely at the end of my rope and can't imagine living this way (or this getting worse??) for several more years.

Suppose I"m looking for a handhold and to know whether anyone else has been through this. Also any wisdom around taking topirimate versus botox? They are supposed to be about equally effective, but I am just hoping to get it right this time. (It's already been 8 months trying to get the candesartan doseage correct).

Thank you

Sadly you have to keep trialling thru the meds.
Dd currently on daily pizotifen plus botox regime.she has one cgrp for acute. She tried cgrp injections too. Ok but constipation.
She did not get on with topiramate and had to stop after two months due side effects. But m8ght work for you.

Topiramate is awful for side effects. I just about managed to get to 50mg and was meant to build up to 100mg but I had to come off it within 6 weeks.

Do you qualify for CGRPs?

I’ve just been put on Candesartan and will qualify for CGRPs if that doesn’t work.

I have NDPH so not technically a migraine but I have permanent head pain 24/7

Not sure about for migraines, but agree with PP re side effects of Topiramate. Go up very slowly....

Thank you both! No, I don't qualify for CGRPs yet, I need to first do the medication and/or the Botox. I tend to be sensitive to medications so I'm worried about the topirimate but have heard for some people it works a treat. The past couple months have been just awful (honestly I've had headaches, aura, post-migraine symptoms) almost every day. So I'm just despearate and was hoping maybe the topirimate would be a miracle whilst I'm waiting for the Botox. And I'm equally afraid the Botox will set off an intractable migraine and then I can't "undo" it (versus just stopping a tablet that causes side effects.) @REDB99 mind my asking what side effects you had?

Any chance you grind your teeth at night? I’ve had migraines for years I never really found the trigger and had no idea I was clenching and grinding my teeth at night so much until I broke a retainer in 4 months that should have lasted a couple of years. Orthodontist made me a special retainer that prevents my top and bottom back teeth from making contact at night and touch wood I haven’t had a headache since. It’s only been a few months but really hoping this might be the long lost solution!

Touch wood Candesartan has worked wonders for me - what dosage are/were you on?

I tried Pizotifen which helped but the weight gain was horrific I had to come off.

have you tried stopping your cycle? The mini pill stopped my pre menstrual migraines.

Not sure about the drugs you mentioned but my absolute lifeline is sumatriptan. Available otc on 50mg and through a doctor at a higher dose. I take hormone migraines too and at the first niggle it’s coming on I take sumatriptan. Works within the hour to completely reverse the migraine and sickness,

I've been on Propranolol and topirimate for a few years now, I had more side effects with propanol than topirimate and had to lower my dose. They both worked a bit. I was also taking zolmitriptan for an attack and rimegepant and sometimes aspirin.

This was after previously trying pizotifen and other triptans over the years.

Then the neurologist finally put me on atogepant in February and after nearly 35 years of migraines for well over half the month , I am now pain free. I still get some of the other symptoms,like exhaustion, sore arms, legs and a bit of nausea etc, but I'm hoping to come off the topirimate and the propranolol very soon. I apologise for any spelling mistakes of medications.
Edited for clarity.

Seconding this. Similar, I get migraine/ vomiting at ovulation and before my period. Got much worse in my early 40s. Nasal sumatriptan from the GP - one squirt and it stops an attack dead in it's tracks.

I've also heard very good things about https://www.nationalmigrainecentre.org.uk/

It was nausea and fatigue which doesn’t sound bad but I could barely function some days. I couldn’t do normal activities and felt in a constant fog, eyes could not stay open. I just about managed to work as I have 3 days a week working from home. When I came off it the head pain was worse than before but that went within about 4-5 days. I do actually think I have less pain now I’m off it. My GP said he rarely puts people on it as the side effects are bad. I was put on it by my neurologist who said most people couldn’t tolerate it but to try.
I have to try 3 meds before being able to get the CRGPs.

Would you consider seeing a Chinese traditional doctor? I’ve been seeing one for a month and for the first time in years my migraines have dramatically reduced. Mine weren’t as chronic as yours are but were still debilitating and laid me low for days.
Mine seems to be related to low blood pressure combined with low circulation energy. I’m thrilled with the difference from a month of acupuncture, massage and herbs. Worth a try perhaps?

Have you tried the triptans?

sumatriptan made my neck so stiff I had to lie my head down on a table- horrible stuff

almotriptan however , brilliant.

I had migraines like yours , had an ambulance sent out twice as they thought I was a stroke

im now on candesartan , amatriptyline as prevention and almotriptan if an attack starts

Topamax nearly killed me.

I have good enough results with zomig as an abortive.
no preventative has worked for me.
I’ve tired them all. Including adjovy.

im going to try Botox next.

I’ve found topiramate really good, had to go to the top dose to totally get rid of them but started to see fewer migraines and a less severe even during the titration up. I now get maybe 2 or 3 a year and just aura, no headaches at all.
I have taken it for nearly 5 years now.
I did feel a bit brain foggy when I first started but that got less and less the longer I’ve had it. You have to keep well hydrated or you can get kidney stones. It affects my appetite and I struggle to know if I’m hungry/full but i am happy to accept that for no migraines!

Im not trying to minimise your issue with what seems like my simplistic response, but didnt want to read and run.

Have you tried drinking 1 pint of water with 1 tsp of salt added and then putting a pinch of salt under your tongue and letting it dissolve. You may be lacking sodium. Worth a try x

Try the topiramate before considering Botox...only because you want to eek out your options.
Topiramate worked well for me (but couldn't drink any fizzy drinks) but after 2 years just stopped working.
At that point we went to botox which worked for about 3 years then stopped.
Now on a monthly CRGP amd migraine free for about 3 years now.

I couldn't tolerate topiramate at ALL, it made me feel so much worse than my baseline. Very slow thinking, poor sleep, freezing cold hands and feet and sudden 'drop' sensations as if I was going to faint on the spot. I wish I'd never tried it and it took weeks to get back to my normal BUT the people who it does work for seem to have brilliant results so I can see why it's still a popular choice to be prescribed. I ended up on Pizotifen which is apparently an older med and not used so much these days but it's halved my symptom days. Do find I'm very 'snacky' and some extra weight has crept on but I'm aware of that and trying to ignore the cravings now!

@doingmyheadinn I’ve had migraine for years. 30+ now. They got really bad about 10 years ago, developed into chronic migraines. I was getting up to 20 a day at their worst, it was awful. I saw a neurologist on Harley St.
I was initially put on Pizotifen but put on 2 stone in about 6 weeks. Stopped the migraines though. I then switched to Topiramate (100mg). The only side effect I had was total loss of appetite, which was initially helpful to get rid of the 2 stones. But continued for about 3-4 months. I literally did not want to eat anything. It was actually quite odd. In time it did diminish. And most importantly my migraines have (touch wood) virtually gone. I maybe get one every few years. So I’m a big fan.
Good luck. Hope you get it sorted.

I’m finally on Atogepant after 25 years of migraines and having tried all the meds mentioned on here. It’s been life changing for me. Keep going op until you can get yourself on to the new CGRP’s.

Have you tried Propranolol op? I tried a few other meds first without success and was very sceptical that it would work as I had been taking Propranolol already on and off for anxiety which had no impact on my migraines. However, by upping the dosage my cycle related migraines are now about 90% gone. Truly life changing for me as I was exactly where you are, so please keep trying the different meds to see if you can find the right one for you. Fingers crossed for you as I know how awful it is xx

I had botox at the migraine clinic and had zero effect on me. I am demented. Sorry I can’t be of more help. I do hear success stories about it, but I wasnt one.

I'd try the medication with the least side effects until you qualify for CGRP medication. I'm on rimegepant and it's been a game changer.
Have you been on any other migraine meds before seeing this neurologist, and if so, would he count them to qualify sooner?

I am also on candesartan, it worked for a while until it didn't but I stay on it.

Have you tried magnesium glycinate or magnesium malate? I take both daily and think it helps, or at least doesn't hurt! Lots of info about magnesium and migraine if you want to do a deep dive.

Topiramate made me borderline suicidal, it was awful. I had to come off it after seven weeks.

I’ve been having Ajovy (Fremanezumab) injections for three years, and gone from 17-20 migraine days a month to, sometimes, none. Average 1-2. Yes, a bit of constipation, but I up my fibre and water and it’s fine.

Thank you everyone, and sorry to hear that so many of you are also suffering.

I do have abortives (sumatriptan, rizatriptan, eletriptan, zolmitriptan!) which have always worked well, but lately I find I need to take a second an hour or so later, and then another the next day, and the next day. The neurologist advised they can also lead to overuse headaches so I am cautious to not use them more than recommended. Essentially, that means I can use them for two days a week and then suffer the rest 😭

@fashionqueen0123 I am currently on 8mg per day, and have been since ca 7 months ago. I tried to build it up to 12mg when the headaches started back up, but couldn't function, I was literally falling asleep at my desk, dizzy, flat on the ground.

@Castlecould I can't take propanalol unfortunately due to a heart issue, the neurologist said it wouldn't be safe

I did previously try amitryptilline, that also turned me into a zombie. And I had a sort of magnet device that delivered some sort of shock to the back of my head which didn't seem to do too much.

@TimeDoesntStandStill thank you, it's not minimising, there is a theory that salt imbalance can trigger migraines! I do get excessive weeing as a prodrome symptom but am careful to drink loads of electrolyte drinks (and also crave salt during and after attacks), so have been known to just eat a pinch when I'm in pain

@Willowskyblue honestly I'm usually sceptical about chinese medicine and other alternative medicine but I'm so desperate currently that I might consider it. I've even read about a sort of ear piercing that can help? Honestly ready to march myself into a piercing shop to try...

@constantnc thank you, yes, I'm worried that I will burn through all of my options before I complete the menopause. But I also feel I can't wait any longer, I'm really suffering at the moment and the past few months have been unbearable. I can't be a good mum because I'm always asking the DC to be quiet, tiptoe around, mummy has a headache again, and I feel quite rubbish about that.

@Noshadelamp yes I'd forgotten about magnesium, this is another good thing to try whilst waiting for the next step

Sorry I've forgotten who asked about stoppign cycles, I've been on a progesterone pill for years now with the hope of stopping the fluctuations but it no longer seems to be helping :( I even looked at having my ovaries removed but apparently surgical menopause will have no effect on the migraines, only a natural menopause.

@CeeCeeDeeBee sorry to hear about your experience, I'm glad you've been able to find relief with ajovy!

Has anyone ever tried acupuncture?

I have Hemicrania Continua and have taken Topiramate for about 5 years now, I take 2 x 25mg a day.
My only side effects at the start were pins and needles in my hands and feet, but that wore off after a couple of months.
I find it really helpful and has reduced my symptoms a lot.
I initially took Indomethacin but it didn't work for me.