Botox for Migraines

[bellinique]

Apologies if this isn’t of interest but when I was researching this I would have liked to ask some questions before going ahead with it.

I’ve had Botox 3 times now due to migraines and do feel that it helps. I’ve paid privately and don’t have the full set of injections that NHS patients have (neck, shoulder etc).

So my experience is limited but if you would like to ask any questions then I’m happy to answer.

I know it's been a month but I hope it's ok.

Background:
I'm diagnosed chronic migraine and chronic cluster headache. The CCH is under control with gammaCore device, but the device has mostly "just" reduced migraine rather than preventing them. I'm a Frequent flyer with the NHS headache team (2 headache nurses who operate under their neurologist and then my own neurologist as well). No drugs have been tolerable for preventing migraine so far, excepting Prostap+Livial to get rid of the hormonal trigger.

I'm going to be trying another blood pressure medication that has a one-in-five chance of helping migraine. Then the plan is to try Botox if that doesn't work, and honestly I think I'll likely be going in for Botox. Pharmaceuticals usually are intolerable and then have a poor response rate for me. (On the NHS you have to fail out of 3 types of preventatives before they'll pay for Botox).

So I guess my questions are generalized.

What's it like? What happens? Is it at all like occipital nerve block? Does it do anything to your face (I heard the medical use goes deeper than the cosmetic which is superficial)? Is the injection site sore after? Anything you wish you'd known going into this?

hi @bellinique I've been told today I have to try occipital nerve injections, other triptans and an epilpesy drug, and a blood pressure tablet before they'll consider prescribing botox injections. Am considering going private, because with my previous history of medications (like @1ToughCookie ) I just know the pharmaceutical options won't help much.

I hope you've been feeling the benefits of your treatment since last summer and would love it if you could post again and answer some of the questions @1ToughCookie asked

@PeninsulaPanic that sounds about right in regards to the meds, ect. Botox is usually not a First line treatment. But I think it would very quickly be worth the money of going private.

My experience (as an update of sorts) is that it's probably the most beneficial treatment I've had so far. As I'm only a few months in I don't want to jinx it.

Getting 30+ injections all over the face and neck is a nuisance but worth it. Apparently stiffness in the neck for a month or two is a common side effect. My expression has changed above the brows. I used to have deep expression wrinkles and they've smoothed out. It used to bother me, because it's part of my expressions not what I thought of as wrinkles. But I'm used to it now. Apparently, after an unknown amount of time after ending Botox, the wrinkles will return again as the nerves unparalyze and begin retraining the muscles.

It was pretty straightforward to get done. A consultation with the neurologist, then to the clinic in the adjacent wing of the hospital, where I think they did an alcohol swab on the injection sites for sterilization and then it was small amounts in the neck, behind the ear, across the brows, between the eyes. I can't remember exactly but it's available online if you Google injection sites Botox for migraine. The needle was the thin one for diabetics. It took about ten minutes in total for the actual procedure. Afterwards it felt like I had small lumps like acne under the skin for a couple days. You're not to scrub or rub them for a week, because obviously if they've been carefully placed them you don't want to move the toxin or force it back out again. So I guess do your big skincare routine prior to the injections.

I'm still getting migraines but they're milder and frequency reduced by 33%. I think that I have a wisdom tooth trying to push another molar out of the way to come in. So February will see another round of Botox and probably an extraction. Then we'll see where the migraines stand.

Hello PeninsulaPanic and 1ToughCookie

I’m sorry I didn’t see your earlier post 1ToughCookie. I’m glad to hear that the Botox has helped you so far, migraines are such awful things.

I was also advised I’d have to try lots of different medications before Botox would be considered. As that seems to be purely due to cost and not benefit/risk considerations, I decided to pay for Botox myself rather than suffer the side effects of the various meds. Even low doses of propranolol (blood pressure med) seem to make me feel depressed and I’ve heard of nasty side effects from the antidepressant and epilepsy drugs which are usually recommended.

I was nervous about having so many injections in one go in case I had a bad reaction, so I found a former GP who now offers Botox mainly as a beauty treatment and asked for a small amount in my forehead and temples. Apparently she treats quite a few women for headache/migraine even though she doesn’t do the full set of injections which are recommended (in the scalp/neck etc).

I keep a migraine diary and in the three months after I had the Botox I had half the number of migraines as I did in the three months before. I’ve been back every 3-4 months and have now had it done four times.

I do think it helps but it hasn’t been a magical cure unfortunately and I still get migraines. So it’s an expensive treatment given that it hasn’t fully fixed the problem and I am wondering whether I should either find someone to give the full set of injections or try a daily medication (currently getting by on triptans).

I was worried the Botox would have nasty side effects or make me look strange but for me it’s been absolutely fine. I don’t find the needles too painful and don’t look any different, aside from not being able to move my eyebrows quite as freely.

I was surprised by how gradually it takes effect. I don’t feel anything for the first few days and then over the next week I get a heavy feeling in my forehead. It isn’t pleasant, a bit like sinus pressure, but it’s nothing compared to a migraine. Once that’s faded I’m just left with a stiffer forehead and fewer migraines.

I think that I now sometimes get migraines without the head pain, which feels bizarre. I’ll realise that I have the other symptoms (dizziness, tiredness, brain not computing properly) but because I don’t have the throbbing head it takes me a while to realise what’s going on.

If you do decide to try it I would just make sure that you see a fully licensed doctor who is qualified to prescribe Botox and not a beautician who relies on a doctor to prescribe for them.

Best of luck and let me know if you have any other questions.

I think that I now sometimes get migraines without the head pain, which feels bizarre. I’ll realise that I have the other symptoms (dizziness, tiredness, brain not computing properly) but because I don’t have the throbbing head it takes me a while to realise what’s going .

I get these too. Mine comes with dizziness and vertigo, which the doc confirmed were likely vestibular migraines. I find prochlorperazine (a strong motion sickness and antisickness med) helps with these.

You're absolutely right about the drugs being a cost saving endeavor. Antidepressants ect are considered beneficial if there's a 25% improvement in symptoms. Funnily enough the placebo effect is about 20%.

So no promises on this next idea, but maybe it'll help before you try antidepressants. Exogenous ketone salts. I have a hard time being low carb enough to get full ketosis to produce enough of my own ketones. BHB salts is what they're sold as and I bought mine from peaksupps.co.uk . I got a monthly daily dose for about £20. It's best done if you keep your carbs low (let's say less than 50g/day, about the equivalent of three slices of bread) otherwise I don't know how well they'll work. But it's better than full keto. Admittedly I've been having a high carb spree about 200g/day and simply stop eating by 7pm and start again at noon, so there's a fast interrupted only by ketones with coffee and cream and sugar substitute sweetener.

I don't know. I guess you can look into the BHB salts idea. Being on antidepressants really hit me hard with side effects and I'm not keen on others sharing the misery. But who knows. Maybe you'll feel fantastic on antidepressants. Lots of people do.

I have botox for migraines on the NHS, but done at a private hospital. My Consultant does all 30 injections in about 5 minutes. It feels a bit crunchy after the first few injections (I think the needle blunts a bit) but isn't terrible. I'm a bit of a blender, so they always have to gently clean me up before I scare the masses!

I'm glad that others get the migraine but no headache thing. It's only when I start lurching, garbling my words, dropping things, etc., that it all clicks. Until then I think I just feel grouchy because everything is too loud, etc.

Thanks so much for the suggestions 1ToughCookie. I stupidly hadn’t even thought of trying a motion sickness tablet and yet dizziness can be one of my worst symptoms. I’ll definitely try that next time!

I’m a bit confused by the ketone suggestion though. My understanding was that a low carb diet/high ketone levels was a headache trigger for many people? I once had to fast for a few days for a medical test and got a terrible headache, which the doctors told me was due to my high ketone levels.

I will look into those salts though. I’m willing to try pretty much anything more natural before getting on the antidepressant train.

Migraine is funny like that. What helps one person can trigger another. But my neurologist stressed that if it happens once, it's a single event. Twice is a coincidence. Three times or more is a pattern.

Ketones might be a trigger, especially initially if you're not accustomed to fasting or low carb. Ketones also are anti-inflammatory and help balance glucose spikes. There's study after study after study of using keto diet to control migraine. Some people always drop out or fail to benefit, but here's the results of one:
Abstract
Background and purpose
Ketogenesis is a physiological phenomenon due to starvation or a ketogenic diet (KD), a drastic restricted carbohydrate dietary regimen that induces lipid metabolism and ketone body synthesis. Two patients whose migraines disappeared only during, and not outside, cycles of very‐low‐calorie KD performed to reduce their weight were recently observed. To confirm our observation, in a dietitian clinical setting two parallel groups of migraineurs, one receiving a 1‐month very‐low‐calorie KD prescription followed by a 5‐month standard low‐calorie diet (SD) and the other a 6‐month SD, were followed.

Methods
Ninety‐six overweight female migraineurs were enrolled in a diet clinic and blindly received a KD (n = 45) or an SD (n = 51) prescription. Mean monthly attack frequency, number of days with headaches and tablet intake were assessed before and 1, 2, 3 and 6 months after diet initiation.

Results
In the KD group, the baseline attack frequency (2.9 attacks per month), number of days with headaches (5.11 days per month) and tablet intake (4.91 doses per month) were significantly reduced after the first month of diet (respectively 0.71, 0.91, 0.51; overall, KD versus baseline, P < 0.0001). During the transition period (first versus second month), the KD group showed a transient worsening of each clinical headache variable (respectively 2.60, 3.60, 3.07), despite being improved compared with baseline, with continuous improvement up to month 6 (respectively 2.16, 2.78, 3.71). In the SD group, significant decreases in the number of days with headaches and tablet intake were observed only from month 3 (P < 0.0001), and in attack frequency at month 6 (P < 0.0001).

Conclusions
The underlying mechanisms of KD efficacy could be related to its ability to enhance mitochondrial energy metabolism and counteract neural inflammation.

So yeah that's just a random study I found. There's lots to go read up on it you care to do it. Personally it does help me as much as Botox. It's just hard for me to maintain without supplementing.

Thank you, that’s really interesting.

Funnily enough, my last migraine went on for days and it was only when I decided to starve myself for a while that it finally broke.

My stomach is always affected too and I felt like it had become a vicious cycle with my stomach issues then contributing to my head. So in desperation I spent 48 hours on just water and fruit smoothies and it did seem to work.

I thought it worked because it gave my stomach a rest but maybe ketones had something to do with it, who knows?! I’ll definitely try fasting sooner next time I get one which won’t shift.

Might as well try it. Not like you're feeling much like eating during a migraine anyway, right? That's my mentality whenever I have a migraine that sticks. So long as you're drinking plenty of water, you're fine for a few days.

Best of luck with your headaches! Whatever works is totally worth it.

Thank you - best of luck with yours too!