What an awful last 5 months of daily migraines! Thanks to these daily migraines that started in February, where I had migraines for over 100 (!!!) excruciating consecutive days, I qualified through my insurance to get Botox. I probably would have been approved sooner, but I neurologist kept messing up the paperwork for my MRI and MRA (negative), and then messed up the Botox paperwork, too. This same neuro's office has a new neuro who is has been doing Botox for migraine for about 10 years.
I've had migraines for 20 or more years. Some times I'd only have 5-6 per month but twice I had them that lasted 6 weeks and were related to barometric pressure. My go-to med for the last 20 years has been sumatriptan (Imitrex). It usually works. I've tried rizatriptan and frovatriptan, but they don't do much of anything for my migraines.
Prior to February I was getting 4-9 migraines a month, which is pretty normal for me. I was diagnosed with menstrual migraines when I was 38 and was on lowestrin for 8 months. My menstrual migraines lessened after that. Through my 40's my migraines ranged from 4-15 per month, and twice I had them for over a month.
In February I lightly bumped the back of my head when I was crouched down doing something and went to stand up. I did not see stars or get a headache. I was totally fine. Two days later I bent down turned my head and suddenly started to get a weird migraine with aura. I was dizzy and nauseated. I suddenly became very very cold. I took my temperature. It was 96.1. I have never ever had a temperature drop when I've had a migraine. I immediately wondered about my pituitary gland and hypothalamus. The migraine raged on and lasted about 48 hours.
I have Hashimoto's and week later I tested all of my thyroid hormones. Well. My TSH (pituitary hormone) had dropped from 0.062 to <0.008. In other words, it was lower than the lab could test. My FT3 and FT4 were a little low, so I increased my T4 by 12.5 mcg. Then, my period was suddenly late. My normal monthly cycle averages 26 days. This one was suddenly 43. I decided to test my FSH (pituitary hormone - Follicle Stimulating Hormone) on the correct day of the month that this should be tested. Well! It was also much lower than it had been. It went from the previous 15.1, down to 5.2. I have now retested my thyroid hormones every month since this started and each time my TSH has been <0.008. That makes two pituitary hormones that are abnormally low. According to the neurologist, my pituitary gland and hypothalamus were normal on my scans.
So now I am wondering if these new migraines might be caused by a pituitary malfunction which has lead to my menstrual cycle being messed up and possible low hormones. My sudden menstrual problems could be strictly coincidental, but it's very strange how it coincided with head bump, the sudden daily migraines, suddenly undetectable TSH, and FSH decreasing by 2/3. I will be 52 in a couple of months. My period was very regular until it suddenly changed in February.
I saw a GYN last week. I asked her about hormones causing migraines. She said not possible. I said really? I'd just read many studies and article about this, plus I was diagnosed with menstrual migraines 14 years ago. I asked her about my weird FSH levels and how they dropped. She said they fluctuate all of the time and they didn't matter. I said well then why are they ever tested and how can you possibly ever make a diagnosis? She prescribed progesterone for me to take the last 15 days of my cycle for three straight months. Of course I went home to read more articles and studies about how migraines can be caused by low hormones, particularly progesterone.
I just saw a new doctor this week. He is and MD but is a functional medicine MD. He agrees and thinks that I might be on to something with my pituitary causing problems and also having low progesterone. He said that progesterone is neuroprotective. He recommended that I take daily progesterone for the next week until I see him next Friday. I admitted that I had already decided the day before to take progesterone. I took one 200 mg pill. My plan was to take it three days and stop, hoping that my late period would then start. I said that I felt more mentally clear and more energetic; could it work that quickly? He said yes. So I'm going to take it until I see him next week.
Now back to the Botox. I had it Tuesday. 200 units in three places on the front of my head, on the sides, occiput, upper trapezius where it meets the occiput, and both lateral sides of my trapezius. It is supposed to take up to two weeks to fully work. I think it is already working. I have barely had a headache, dizziness or nausea since the day after I got injected. Last week I had a throbbing migraine every day ranging from mild to almost severe. So far, so good four days after Botox injection.
I'd love to hear from other migraine sufferers. What, if anything has worked for you? If you've tried Botox, I'd love to hear how the experience was for you.
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Botox takes a couple of weeks to work on paralyzing the muscles. Also it generally works much better on the second round ie the second three month block. This is my experience in the UK though. I don't know how much Botox they put in I just know it's about 30 injections. It's the only thing that has much impact on my migraines. They are still chronic though. I had mine 11 days ago realistically I'm not expecting it to work yet.
Hi Cat00. How many times have you had Botox? So when do you personally start to experience positive effects? Not even until two weeks or more? The reason it will work better on consecutive months is that Botox has a cumulative effect. First time around you're atrophying spasmed or tight muscles for the first time. Second time around, those muscles have been completely relaxed and allowed to atrophy relaxed for about two months.
The warnings of negative effects of improperly applied botox can occur as soon as 36. Did your injector inject your corregulator muscle right above your brow? On day four I started to feel one eye having a change in vision. Now my brows look a little different. It can only be from the Botox. On the same day I also noticed that I have a burning sensation and a knot on my right later edge of my trapezius, right near where I was injected. Full cosmetic results from Botox are said to take 7-10 days. I've had minor cosmetic Botox in the past. I start to see and feel results by day 4-5. This is probably because I've done it several times. I've also had other therapeutic Botox in the same spot several times. The last time I got it the injector injected the muscle too medially. I saw the negative effects of that mistake starting by about day two. It took that muscle 4-5 months to recover and to become normal again. My Botox for migraine injector told me up to two weeks for it to take effect. Since I'm already feeling and seeing some negative effects on day four, positive effects are probably occurring too.
What medications do you use for migraines that occur before your Botox starts working or as it starts to wear off and you start to get migraines again?
I've probably had about 20 rounds of Botox, I've had to stop twice for pregnancy and breastfeeding. The only negative effects I have had are when the first round was given years ago where my neck hurt so much for months I almost refused to have the second round but I'm very glad they convinced me otherwise because nothing has had such a positive effect on my migraines. I Since the first time hurt so much they have always spread the injections further around my neck and so I haven't had any problems again. I also have a martial arts class I usually do every week which I cancel after Botox for one night so I don't aggravate me neck as it involves a lot of boxing.
Other than that I take Amitriptyline everyday supposedly for my migraines which it seems to have no effect on but I'm a bad insomniac and really helps me sleep! I'm allowed 6 Triptan days a month and 2 days conventional painkiller days a month and thats it. I've tried 13 different meds, G.O.N injections, anaesthetic injections in my neck, acupuncture, transcranial stimulation devices, tens machines you name it, botox halved my migraines where nothing else has helped so I'm quite a fan!
Hi Cat00. 20 rounds?! Well, you are the Botox expert for sure! Are they only injecting the back and sides of your neck, your trapezius?
With all of the Botox I've had before (a cosmetic injections on occasion but mostly therapeutic into muscle) I've been told no strenuous activity for at least 24 hours. This time I was told 48 hours. This is because exercise can make it spread from it's injection site, just like laying down in the first four hours would. This time I made it to 37 hours before I walked on my treadmill than decided to do a sprint for 10. It was not very strenuous, but still. It wasn't the 48 recommended hours.
I've taken low dose duloxetine for muscle soreness. It does nothing for my migraines. Which triptan do you use? I've got sumatriptan, rizatriptan and frovatriptan. Sumatriptan is the only one that does anything, but lately that doesn't even work. I also can only get a certain brand of the suma that works for me. Maybe it's same with the other triptans; need to find a brand that works. Which type of conventional pain killers work? No OTC NSAID works for me. What are anaesthetic injections?
Oh! Which transcranial stimulation device did you try. My neuro's office has one I'm wondering about. I can't recall the name right now.
My PCP has said she has other patients who do Botox for migraine and they don't have a migraine for 2-3 months. I cannot even imagine what life would be like if I was migraine free for a few days at this point, for get about a week, can't even process the possibility of no migraine for a month or more!
Yeah I think 10 days is the longest I ever made it without a migraine!
I use Zomig Nasal sprays, Sumatriptan does work sometimes but it hurt my stomach for days afterwards so I stopped using it, Rizatriptan didn't work at all, Almotriptan didn't work and Frovatriptan didn't work, but Zomig workd more than 50% of the time. Although I can technically have two "normal" painkillers a month I don't bother because they have no effect.
I think ideally they want the botox to bring you out of a chronic stage so normally they wouldn't give you so many rounds but because I've had to keep stopping it never really got proper chance to get going. Although my neurologist did stop them after two rounds a couple of months ago because I only had 13 migraines that month which takes me below the threshold for the NHS to give you Botox but I got so much worse in the next month they've started them again.
They give the injections all over my scalp and bottom of my neck, a couple on the temples and in my forehead. I can't remember the name of the anaesthetic they put in my back, the machine was called a Cephaly not sure if its technically "transcranial" though, it had no effect.
God I wish I could have 3 months without migraine!! Don't think thats going to happen though boooooooo.
So i can only answer from my own perspective as we all different. I have chronic hemicrania continua and so take a daily preventative meds. I have tried nerve blocks, gammacore, 3 other preventives and so far no change. From a non medical perspective i have tried various elimination food plans, supplements and accupunture which has not made any difference. I do find chiropractic beneficial. So i was approved on an exceptional basis for botox and just had my 3rd set. The 1st set of injections quantity were mid 30s and my 2nd and 3rd set of injections were around early 40s. For me i have seen no change but have been told by my neurologist that it is a cumulative effect and wont see any difference until by 3rd or 4th set. So next set is August. As i said at the beginning we are all different so i keep everything crossed it helps you, it has helped others (and me soon🤞)best of luck that it brings you relief x
Hi Kzwalls. I'm crossing my fingers too for you that you'll have relief soon! What do you take as daily preventative meds? I tried the recommended non script 400 mg B2/riboflavin and magnesium. It did seem to help a bit for awhile, then it stopped helping.
What does approved on an exceptional basis mean? Can you please explain?
Yes, from my experience it has a cumulative effect. The injector will have to make sure they are injecting into the same location for you to have maximum benefit. Otherwise injecting in different locations will not have cumulative effect. Even if it's the same muscle but a different part, you can have different effects.
As an update on my first ever Botox for migraine last Tuesday morning, this has been my experience so far:
Tuesday following injections: Felt ok. No major throbbing migraine. Minor one. You cannot lay down for at least 4 hours following Botox. I was also told not to workout or to wash my hair for 48 hours.
Tuesday night: My head was a bit uncomfortable to lay on to sleep.
Wednesday: Felt better. Had the tinniest of migraines. This is night and day compared to just four days before.
Thursday: No morning migraine. I was fine until I went to a dentist. He messed with moving my jaw around to see how my teeth fit together. Half hour after leaving his office I started to get a migraine from the jaw manipulation. I took 1/4 of a 50 mg prednisone and that stopped my migraine it it's tracks. This is the day my left eye and left vision started to feel weird.
Friday: I woke up with a throbbing migraine, just like I had done every day for weeks and months before I got Botox. It was from the dentist. I took one Frovatriptan. Did nothing. Followed it up with a second Frova. Did nothing. (this was the second time I'd tried Frovatriptan. First time I had the same lack of results). I felt awful all day long. I was so bummed out that my throbbing migraine was back. The same thing happened 6 weeks ago when I saw the same dentist and he did the same things to my jaw, but that time it flare up even worse and I felt awful for multiple days. Yes. For sure my left eye has had negative side effects from where she placed the Botox over my brow. Not happy with this feeling or look! It's not like my brow has drastically dropped or anything, thank goodness. It's lowered a tiny bit and it's effected how it feels and my vision. I had an injury to that brow, so that might be why. The neuro should have been aware of my eye injury, as it's in my chart. Hmm.
Saturday: Again, woke with a throbbing headache. I did not sleep well due to the throbbing. I took my go-to migraine med, sumatriptan. It did nothing. I later took 1/4 of a 50 mg prednisone and it stopped my migraine. It started to come back a few hours later. Again, took same prednisone. It worked again! I then cut all of my 50 mg prednisone pills into quarters 12.5 mg each.
Sunday, today: I slept great last night. No migraine this morning. Burning in the right lateral edge of my right trapezius near where the Botox was injected. I also have a big spasmed knot there. My left eye still feels weird and my vision is mildly obstructed as if the brow is lowered on the inner half, but the outer half looks a little higher than the other side. Great. I'll have this for the next 2-3 months. I am not letting her inject that exact same area next time.
I am an 80 year old man who has had migraines for 70 years or more. They became much more frequent after I retired and now I have them on two days out of three.
I have not knowledge of hormonal headaches!
I use Imigran/Sumatriptan/Imitrex and if taken on an empty stomach is effect sometimes in as little as 40 minutes but usually within an hour. On a full stomach, recovery takes longer and occasionally not at all.
I've tried virtually all treatments available that four neurologists have tried with me, including Botox (twice!), and I've tried numerous alternative therapies, all without success. Nothing stops the migraines from attacking me.
I had my first Botox treatment in March this year and have had no improvement to date .
In the 3 months since treatment I have averaged 16-17 attacks per month.
In my first week after Botox I had 5 migraine s but they have dropped to 4 a week since .
I have read that some people respond better to the second lot of injections , so I am hoping that this is the case for me as I have my next treatment on 24th June .
I had my third round of Botox in early April and I'm now having reduced pain levels and fewer auras overall. No single day without at least a half or 2/3rds of it without headache/aura. But hey... a few hours off is amazing!
My first round of Botox last November kicked in after 8 weeks - slowly at first (i.e. one or two hours of relief at a time which increased to a half day). It then lasted about 2-3 weeks before wearing off.
My second round was more successful - kicked in sooner (10 days) and lasted till week 10 (of 12 weekly jabs).
This third one caused me a lot of pain and disrupted me significantly. For the first 6 weeks I was in constant migraine with aura (visual, motor and couldn't bend over, etc.). But I've since got better and I think the Botox is working now.
I've had 3 rounds and am scheduled for my 4th in a couple of weeks. The first round was okay-ish, kicking in after a couple of weeks, and taking me from 5-7 migraines/hemiegic migraines per week down to about 4. I had crazy pain for two days after the injection, in my ear and jaw. It seemed like the botox wore off about a month before the next round. Second round also took a couple weeks, but the results were much better. Third round improved even more, but they are more frequent/constant now, during this last couple week stretch, as it was with the 2nd round. Emgality was kind of helping with that in between time, but I developed an allergy to it. I never thought I'd look forward to 31 shots in my head, neck a shoulders, but I genuinely do because I know relief will eventually follow. Oh- and OF COURSE hormones cause migraines! My goodness, that doc must have missed a whole month of school or something. Menstrual migraines, pregnancy migraines, menopause migraines, migraines caused by puberty... I mean, has she looked at the side effect warnings on most hormonal birth control methods? Can cause migraines. Oi vey.
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