Migraines and botox

[Claudeminh]

Hi all, how are you going with Botox injections? I started March 2015 and it's been really good. Took 6 months to really kick in bit then had good control with a few major relapses. Had 6 weeks of migraines after all night flight from Asia. Then steroid injections and that settled again. Often at end of 3 months before next round get migraines again but after a week or 2 after Botox is settles again. Exercise does not make it worse but eating bad sugary food makes it bad. How are you finding it? Does it wear off at times? I am overall able to cope much better and can now work except for those relapses. I know how my life depends on the Botox, I want to know how else you all are. Best wishes and let me know

[Cally01]

Hey 😆 unfortunately botox didn't help me at all but i do believe it's because my migraines are mainly jaw migraines. My usual aura migraines can last 5/7 days straight and triptans don't help much anymore. I'm also feeling hormones are playing a part in this ( peri menopause).

Tried 2 sessions of botox and really had no impact on severity/frequency.

Cut out all sugar and eat healthy just can't run much due to constant headache.

Glad your doing better. Take care 😆

[Phonecase]

Hi Claudeminh

Your post gives me hope.

I had my first round of Botox on 8/8/16 but as of yet have had no relief, I fact if anything it is worse.

I have had the same amount of days with migraine as usual & these last two weeks have been awful, I am on my 12th day of being in bed ! Last week was all migraine, this week has been a chest infection & of course accompanied with migraine !

Is there anyone else who has had Botox that has taken a while to ' kick in ' ?

[Cally01 in reply to Phonecase]

Hey phonecase...i do know a few people who have had results. Some took a month to feel a difference and other's it was the 2nd round that nailed it.

Hang in there 😆 fingers crossed for you x

[Claudeminh in reply to Cally01]

And for some cases there was hardly an difference in 6 months and then it began to improve.

[Cally01 in reply to Claudeminh]

I never went further than 2 rounds maybe i should have kept going 😣

[sentinel in reply to Phonecase]

My nuerologist explained to me that some people don't have any relief at all until the second round. He said to try at least 2 rounds before deciding they didn't work x

Hope you find relief xx

[Claudeminh in reply to Phonecase]

Ok early days still for you. The first month had small effect if any so you still have time where it might work. Hang in there, pray for deliverance and keep in touch . It's good to talk to people who know how hard life can be. At least we an talk to each other.

[Phonecase in reply to Claudeminh]

Thankyou.

Yes I agree, life is hard a lot of the time, waking up so much of the time in pain & having to battle through your day. People who are healthy don't know how lucky they are ! X

[Claudeminh in reply to Phonecase]

Yeah, I relish my pain free days as I know how precious they are.

[sardine in reply to Phonecase]

Hi, had my first round of botox in july. The next 6 weeks were hell, more frequent and more severe migraines, that the triptan didn't help. Nothing would relieve the pain. I am not sure i will go for the second round. I am dreading it. It was such an awful experience, i passed out towards the end. My face felt very uncomfortable for weeks on end and it made the migraines worse. Don't know what to do anymore. Still getting the migraines nearly daily.

[PattiJay in reply to sardine]

Hi sardine!

It's so strange how the 6 weeks AFTER your injections were hell! I get it, I've had some VERY strange bad instances as well, including throwing up and feeling weak and nauseous, and yes getting headaches. I even went to the ER on Tues. Always dizzy, always nauseous since the Botox. Don't know. I will go for the second round to see if that second round is the passport to better days...I didn't come this far to give up...but, I don't know. All this suffering for everyone? I'll do it for you sardine. I'll keep you posted.

[sentinel in reply to PattiJay]

I suffer with the nausea and vomiting for 3 weeks after the injections along with the flu like symptoms and weakness. I was told to expect this as a side effect and it was noted on my consent form of my first lot of injections. Apparently it's your body reacting to the botox. Botox is poison after all. This subsided after the first 3 weeks the first round and I'm 2 weeks into it 2nd time around, so still waiting it out. I do get migraines in the first few weeks and they are quiet intense but again I accept that as for the rest of the 3months they aren't as bad as they were and I now have clear days.

I can't exercise for about a month after the injections as even the kettle feels heavy. Normally I lift 10kg dumbbells per arm.

[Claudeminh in reply to sardine]

wow god thats awful for you. I have heard of people having terrible time of it and its very disappointing for you. Hopefully they can help you gain control of it with other measures. dont give up, keep searching for a control as there is most likely one out there but you are being forced to find it. I really hope something helps you because its no good trying to live like this. I had 170 straight days of migraine so I know what it can do to you.

[Claudeminh in reply to Phonecase]

Hang in there. The best results I have had have been in year 2 of the treatment! It started like wow, I had 5 days of migraine free time in the last month of the first treatment! Now I have 25 days or more a month. This time round, I had 12 or 13 weeks free of migraine altogether!! OMG! A miracle and then it started to wear off and now Im back to daily until next week when i get another injection round. Its funny though, while I had the migraine free weeks, I was unemployed and really stressed about money and completely freaked out so I was not able to really love it. Now I found a job and so initially it will be stressful in the way new things are so I am hoping i will have some control over the migraines soon in time for the job start. Overall, I think having control over finances will help a bit, however, migraines for me seem to occur with and without stress and there is no hard and fast rule about when they come. Stress exacerbates the migraines feeling bad, but not always creates them. Overall, its the drugs and the botox that have the best control over the migraines rather than the environment. Its very sobering for me to realise that this is the case, as i am very dependent on the medicine to help me live. Lifestyle is part of it, but its not enough on its own to control the condition. So all the ' new age natural lifestyle stuff ' is just not enough for me! It helps to eat clean and low inflammation but alone, natural medicine cannot combat this serious neurological condition. I had viral meningitis and the shock to the central nervous system precipitated the condition. Only equally strong drugs can help control it. Having said that, I am determined to eat really clean and low inflammation to aid the drugs and control the weight problems and associated cardio vascular conditions that come with it.

[sentinel]

Botox has saved me!

I've just had my second round. My migraines are a mix of hymepligic, prolonged aura, jaw and shoulder migraines.

Flying does impact on them. I've flown twice in the first lot of injections and looking at the pattern in my migraine diary, it did increase the frequency for a few weeks after.

Not eating regularly also effects me. Again I don't eat sugar or processed foods. I also stick to a high fat, low carb, no sugar diet. I was given information about this from a very trusted neurologist source that it helps many conditions. I drink an amount of caffeine as this also helps in my case. I know if I've not had enough or had too much ( everyone is different) I don't eat wheat as I'm intolerant.

I have slowly started exercising again since Botox. But still find more than 20 mins cardio kicks a migraine off ( even though they are more easily controlled) I'd rather stick to HITT with weights.

For the first time in over 18 years I've had 5 days the first month, 10 days month 2 and 8 days month 3 completely headache and migraine free! Which is amazing! I was working on 0 days prior to Botox and having weeks of migraines and cluster headaches. Although there are days where I know I should have migraines as I have the aura, numbness, vertigo, eye blindness etc there isn't any pain.

For me Botox is a life changer. I can work constantly. I can plan to go out with my kids and majority of the time go with little pain or controllable pain.

Plus if I do get a migraine it seems now to take less mess to get rid of and it definitely lasts for a lesser amount of time.

[babs1234 in reply to sentinel]

I would love to try the low carb high fat diet but until I find out whether the gut problem is due to gall bladder problems it a no go for me. I need a low fat high carb but wheatabix absolutely cripples me so now wondering if I've suddenly become intolerant to that. Cluster headaches not as intense as they used to be and I'm determined to come off the Triptans as I don't think they help my gut problem. Glad you're feeling better

[sentinel in reply to babs1234]

If you're struggling with things like wheat try quiona, green veg and salads or rice rather than wheat/ grain based carbs. Also nuts etc you can get your carbs from better sources than grains X

I can wait to come of my preventative meds as my hair is now so thin it's falling out handfuls a day topiramate is bad for making your hair falling out

[Claudeminh in reply to sentinel]

O no that's no good. Then preventatives I'm on have created weight gain and fatigue.

[Claudeminh in reply to sentinel]

oh thats good news. Its had excellent effect for me but I have to do what you are doing and clean up my diet act.

[Phonecase]

Thanks for the replies , I will keep hoping. X

[timj]

Hi, been using botox for about a year and it certainly helps, more in control of my life now, but as you say you can tell when you need the next lot - about 12 weeks for me. Just to comment, you say the migraines are worse with sugary food - I've found it's not the food at all but I do get cravings for chocolate etc, then have a bad headache the next day - I've worked out that the craving is a warning sign that the migraine is coming rather than the sugar contributing. But back to botox, it's halved my intake of cocodamol and zolmitriptan.

[Claudeminh in reply to timj]

That's interesting actually. As you say, the cravings indicate the arrival of a migraine. I'm not sure if I'm the same, but I've been reading about the ketone diet and low inflammation diet. I think I should try it as well cause the sugary foods playing havoc with me across a number of fronts, gut headaches and weight gain, glad to hear Botox is working for you too,

[PattiJay]

Hi Claudeminh!

I had my first injections about a month ago....and the migraines that used to kill me are a little better. I have a lot of other circumstances that cause headaches so it's hard for me to sort it out! I think the "OW IT HURTS TO TOUCH MY HEAD" headaches are better, so I guess that's a start! I am glad to hear that your injections have worked for you! Bravo!!! Cheers to you!

[Claudeminh in reply to PattiJay]

Hi pattijay, good you are getting results so soon that's a really good sign! I'm going to try the low carb diet to see if that helps as well as since being on endep and proprananol I am 14 kilos fatter! So really have a few reasons to get onto it.

[PattiJay]

Funny I was feeling miserable for weeks...headaches, nausea, and fatigue and I was sort of NOT getting it that my Cymbalta dose was inadvertently cut in half because the pharmacy kept calling the wrong doctor, and I went to my shrink (because she is managing it now and not my neurologist anymore and she said I was having a full-blown withdrawal syndrome effect!) for a routine medication update today, feeling better. So I don't Claudeminh, just make sure all your meds and diet and everything is in order. I just had my Carvedilol cut in half by my Cardiologist (beta blocker) and was not getting my Cymbalta so I was screwed up with my meds from the get-go, so I'm going to keep giving the old Botox a chance over here in Chicago! Don't worry, I've gotten a bit fatter as well, and hoping to lose a few! We can work together! Keep me posted on how you do! I will keep you posted as well! Good luck, chin up, and I will be pulling for you!!!

[Claudeminh in reply to PattiJay]

thanks a lot. Its good we are not going through it all alone, there are many of us fighting brain related conditions it appears. Im in Australia Melbourne and lets keep in touch.

[PattiJay]

You are most welcome! And the fight is real! It seems to get better, then BAM, something happens! Just try to get through it a day at a time! I think I'm recovering from all the meds I took this past Friday to fight a breakout left temple migraine that sprung suddenly out of nowhere that I was one inch away from going to the ER for...when that happens it feel like a dagger and I think the Relpax is the only choice! And I'm the girl with Botox and Topamax and Cymbalta and muscle relaxers too (geez I forget what I'm saying....Flexiril! That's it!) So I am literally on everything, you would think I would be just FINE! I am NOT! So I Have to sometimes get through this and hope that the very next minute will be better! I do hope the very same for you Claudeminh!!!

[luley]

Did you get the botox on the NHS or privately

Because grandaughter has been waiting since May for urgent referral as 10/10 post traumatic chronic migraine 24/7 no let up and today told it will be well into 2017 before she gets botox on NHS

Its criminal at such an important year in her life and education

[Claudeminh in reply to luley]

I'm in Australia and if you pay for a neurologist to inject it privately then Medicare covers the $1000 Botox . The fee is about $350 with 250 refunded to me from Medicare. So every 3 on this price it's a 150 to 200. Can you see if it can be done privately? Worth paying for. Regards and best wishes claudeminh

[Shelby3]

I have 2 major brain surgeries for AVMs that have bleed with one leaving in metal clips & the other Gamma Knife & have headaches worse than ever. I am on control patches to combat pain which makes my quality of life horrible. Will Botox help or make it worse. I need help anyway I can get it'

[Claudeminh in reply to Shelby3]

As far as I know Botox helps migraines and also constrictures of muscles. So if you're having migraines from the surgery it's worth asking your doctor about it. Definitely look into it although I'm not qualified to tell you if it will work. That sounds very full on for you and I send my best wishes for recovery. Keep looking for answers to help the pain.

[Di-a-monds]

Botox freed me

Tried all the meds you can think of, nothing worked for me until I stopped treating my head through the stomach! I've been having Botox every 3 months for 2 and half years, it's changed my life. Instead of having more migraine days than pain free days per month, I now only have 1 - 2 migraines a month, even had some months pain free. I also do regular yoga and mindfulness, which I could not have done previously. I know it doesn't work for everyone, but Botox is definitely wirth a try, I don't take any other medication now.