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

Botox has changed my life. I would have migraines/ severe headaches 4/5 times a week before it. Now I'm unlucky to get one a month. Amazing

You've tried so many different meds in really surprised your neurologist isn't prescribing CGRP meds.

The Migraine Trust say

"Your specialist may recommend a CGRP mAb to help prevent migraine attacks if:

you are having at least four migraine attacks a month and
you have tried three or more other preventive medicines at the maximum doses you can tolerate for several months each, and they haven’t worked."

Which means you should qualify unless your NHS trust has widely different criteria.

There's information on how to access CGRP medication on this link:

migrainetrust.org/live-with-migraine/healthcare/treatments/calcitonin-gene-related-peptide-monoclonal-antibodies/#page-section-6

My neurologist and my gp both said that topiramate is to be avoided because of the many side effects describing it as a serious drug.
I tried 3 medications before I was allowed Atoegepant which has has been a life changer for me. So in your situation I'd probably give the botox a try. Candersarten, amitryptiline & Propanolol were the ones I tried before that. Propanolol had no effect, same for amytriptoline & candersarten made me dizzy as my blood pressure is on the low side & it's a beta blocker so that wasn't helpful. HTH

@Noshadelamp thabk you for this; I am currently not in the UK so the prescribing guidelines are a bit different. The neurologist hinted I’d be allowed to skip one step (Botox OR topirimate) but not both, before I am eligible for the CGRp medications. He said the CGRPs are truly excellent and so many people do well with them but I don’t yet meet the reimbursement criteria. He does seem reasonably flexible so I reckon if I have an intractable migraine after my first Botox he won’t force me to have a second round, but I can’t be certain, so it could be another six months of inadequate pain control. Hence my thinking of maybe trying the topirimate for a wee while and if I have bad side effects I can at least cross it off the list (or by some miracle it works and I am manage it!)

I had three months on amitryptilline then about 6 months on anti epilepsy drugs. That combo seemed to shut up some irritated severe. They stopped then years later they flare up again and I have weird episodes. I do agree sometimes it's just trailing things. I had my first migraine in five years last week. Sounds weird but I can almost just shut them down but not getting sucked into dread and panic of what he'll is about to decend on me. But mine aren't hormone related. My are mostly strees, dehydration and weather pressure changes. I am scientist and non woo at all but I do think be open to believing a new med will work helps. Once the panic sets in, I'm then f@cked.

It's horrible. I was shaking and crying in Sainsbury's last week before I was sick as dog ten minutes after my first twinge. So basically Try everything and just belive one of them.will work. Because thinking it's hopeless is self forfillling with this I feel. Easier said than done

I'm sorry to have assumed you were in the UK.
Yes I would try the topirimate in your situation.
I had Botox injections 15 years ago in my neck. It wasn't the right treatment for me unfortunately.

I wish you the best.

Also meant to add, my migraines aren't hormone related. I am on HRT after a total hysterectomy when I was 35 due to endometriosis. So been post menopausal since then and well managed with HRT.

HRT? if available wherever you are. My hormonal migraines became more frequent and less predictable around age 47 and they eventually reduced to about one every 4 or 5 months when I was on 75mcg Evorel and 100 Utrogestan/generic equivalent (a couple of years earlier on lower oestrogen and different progesterone had no effect). I stopped taking HRT for other reasons last summer and the migraines came back so I am now back on HRT and hoping it does the trick again whilst I wait for my referral to headache clinic.

I tried loads of preventers (candesartan, amitriptyline, propranolol, Cefaly device), just finishing 6 months riboflavin, caffeine, being caffeine free, avoiding peanuts, avoiding alcohol. I don't have food triggers though, it is definitely hormones with me.

National Migraine Centre were good when I was in contact a few years ago but they are really struggling financially at the moment so not sure how long they will continue.

I’m so sorry to hear how tough it is for you right now. For what it is worth my neurologist insists on magnesium supplements regardless of anything else - I’ve met two people for whom magnesium stopped the migraines dead (not for me, sadly).

I had one neurologist put me on topiramate and I was on it for some time but when she changed jobs and I got a new neurologist he was very keen to get me off it, describing it as a “dirty drug.” I do have botox quarterly - I’m also not in the UK and for me I had to have tried a lot of other options before insurance would cover it. Botox has been pretty impressive for me - though I was warned that two or three rounds might be needed to get to maximum effectiveness. I can have a week at a time without a migraine now, which had been unthinkable before.

But if you can get a CGRP based medication too that would be ideal. As with all these medications, something can work for someone and not for the next person. It’s so hard to get it right.

Mine were not half as bad as yours but HRT was an ‘almost’ instant cure. It felt quite miraculous really. HRT also solved my insomnia so I expect that will have helped too.

I’ve tracked everything possible to see if I could find a reason for my migraines but haven’t found anything.
I still get migraines but they are much less frequent and less debilitating. I guess the fact I’m much less tired helps a lot.
Your migraines sound awful. I really hope you find something that helps.

I realised that my migraines were related to my menstrual cycle after keeping a diary and noticing that they clustered on a monthly basis and started the progesterone only pill after a GP appointment. Went from 3 migraines a week to none in seven years after a couple of months of hormones evening out. Can’t recommend enough, changed my life.

Estrogen HRT patches.

I’ve had a fucking awful 12 months of migraines getting worse to the point it was twice a week. I used sumatriptan and some anti nausea meds.

I’m 45. Only other peri menopause symptom was forgetting words and no periods for 4 months. Went to the gp who suggested the patches, and first put me on the Conti type where after a few weeks, the patch dose changes - Bam migraines back until the patch strength increased. This was a vast improvement but at my two month review she changed me to Evorel 25 patches and I’ve been nearly 2 months without a single migraine. Two months!!! It’s absolutely wonderful, I feel like a different woman and have my life back.

I’m so sorry you are suffering OP migraines are truly horrible. I used to have them around my period every month and found the contraceptive pill made them unbearable despite the Dr saying it would help. It’s also worth seeing an osteopath to make sure your back hips etc are aligned. I regret putting it off for so long because mine said my hips were out which was aggravating the nerves up into my neck and making the migraine situation worse. I definitely noticed a difference. I have tried acupuncture for an unrelated issue and it worked really well. Would definitely do it again.

I love my topiramate. The only negative for me is never forget it. If I do, I wake up with a killer headache.

I would start with a pill you can discontinue if you have really negative side effects. An injection you are stuck with waiting it out.

@HawthornLantern what dosage of magnesium does your neurologist recommend? I see the Migraine Trust suggest rubidium (B2) 400 mgs per day and Magnesium 400-600 mg per day.

Also saying hrt. I'm 42 and like you had migraines before my period since I was young but last two years I started getting them pre and post period, pre and post ovulation. Basically anytime my hormones fluctuated. After a few weeks on hrt they've gone. I only ever get one now of I forget to change my patch on time.

Botox has been amazing for me, cannot recommend it highly enough.

Topiramate worked for a while but the cognitive side effects weee horrible.

I've had my daith pierced , didn't work for me and I've had acupuncture, I was the only patient that the Dr who did it hadn't seen any improvement with.

I don't drink, smoke, have caffeine or sweetners, non of these things make a blind bit of difference. Like I said before I had no side effects at all from the topirimate, the last option given to me was between the atogepant and Botox. The atogepant has been life changing.

Years ago I took feverfew capsules and they actually worked really well, I think I got pregnant though and stopped taking them. All my migraines stopped when I was pregnant and breastfeeding, so they are obviously hormonal. They have been ramping up in perimenopause. I can still tell if I have one on the atogepant even though there is no pain.

That's what happened to me. I had no idea it was that and thought it was life circumstances (from same injury). Horrifying and lasted months.

My friend was having 2-3 migraines a week and was offered acupuncture from occupational health at work. She was amazed that she didn't have any more until a period of stress in her life but even then they have not try to the same level. Worth a try.

Sumatriptan injections were a godsend when I was battling with migraines a few years ago

I wouldn't touch topiramate with a barge pole. It's been suggested that I could go back on it and no one understands why. I couldn't stop drinking, (it wasn't that hot) everything tasted like metal including water, I had a 24 hour fever, diarrhea and I ended up with hearing loss

I'm currently on pitzotofen, GONI and rimegepant

You've had some great advice here. Everyone is different and you do just have to find the drugs that work for you - but for me, Topiramate was awful. I had it to treat my epilepsy but I ended up with the cognitive skills of a potato, and it led to me losing my job. I don't know anything about the other drugs but my god I would try them all first.

Don't forget the b vitamins esp b6.and take magnieusm as well

My DD is 15yo and topiramate has been a miracle drug for her. She was getting migraines every single day and missed so much school. She also got vestibular migraine and couldn't stand without swaying. Topiramate stopped the headaches and vestibular issues completely in 2 days with no side effects.

Im a bit concerned with people saying that topiramate is dangerous and a "dirty" drug. It was the first suggestion from her paediatrician and has worked amazingly well for her.