Has anyone had Botox for NDPH? - National Migraine...

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Has anyone had Botox for NDPH?

Bobb_XO profile image
11 Replies

Hi everyone,

I'm trying to get a bit of info & I'm new here so please bare with me.

I've got what's being called a Daily Persistent Headache - Diagnosed January 2017, but suffering since February 2016. I also have a migraine abut once a month or so, as well as 'ice pick' headaches.

I've been on umpteen different medications, I've had pyshio on my back & neck, I've had acupuncture as well. But I'm what my neurologist calls a 'coper'.

I'm able to manage my headache, I know my triggers, so I can continue with everyday life.

Rather than try more medications however, I've been recommended Botox injections.

Any research I've been doing seems to be people having the injections who suffer from migraines continually.

I'm hoping some one, somewhere can share some insight into the effects of botox on NDPH

Thanks

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Bobb_XO profile image
Bobb_XO
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11 Replies
Cat00 profile image
Cat00

My neurologists doesn't think there is a distinction between headache and migraine. She would say it is all migraine and that some are mild and some are strong. She would count you as a chronic migraineur. She's the best neurologist I've ever had and I've had a lot!

BOTOX has been life changing for my migraines none of the meds made any difference including morphine.

mmaya profile image
mmaya in reply to Cat00

Lol!!!

Jaysus, I am actually in shock!!!

Change neurologist quick, stop feeding money to that parasite.

Joke aside, I agree that the word migraine is probably misused a lot.

I come across people everyday telling me that they have a horrible migraine while eating a pack of crisps, or checking fb...I find it amusing.

There are multiple types of migraines and in all of them the headache is only one of the symptoms.

On my case for example, I'll end up with the head in the toilet for hours, violently vomiting before a migraine. I've never seen a headache doing that.

There are studies now that actually identify the mutation on the chromosome that causes the migraines.

Your neurologist is rubbish...

Cat00 profile image
Cat00 in reply to mmaya

I don't think you understand what I'm saying, she's not saying all migraine is a small thing like a headache. I have chronic migraines, I have migraines over 60% of the time, on average, these migraines fluctuate in intensity from horrific to weird neck jaw line things to a headache. We tend to separate these things, partly so we can work out if its going to get nasty and I'm going to have to change my plans or if it just going to ebb on like this, like a headache. My neurologist explains that none of these painful sensations are separate from migraine, they are all migraine, they are all manifestations of the neurological response of an overexcitable brain stem.

And they've only identified one mutation there will be more its not a one mutation kind of problem. And I don't pay her.

mmaya profile image
mmaya in reply to Cat00

OK I apologize, I didn't read your post properly :(

I suppose I'm so sick of listening to people saying that migraines are headaches that I just blew up! Sincere apologies!

mmaya profile image
mmaya in reply to Cat00

Cat00 , you obviously know your stuff, my migraines are changing pattern over the last 2 months and I'm starting to think its estrogen levels...do you know any natural way yo control this? Thanks a mill!

Cat00 profile image
Cat00 in reply to mmaya

Female hormone migraines are generally, in my experience, the most persistent and respond the least to medications, I suspect there isn't much that can be done. Unless of course you have a thyroid problem which is making them worse because I think once the thyroid problem is correctly diagnosed and treated sufferers can see dramatic reduction in their migraines. I do know that women who have menstrual migraines have had hysterectomies and still have the migraines, but the study did not specify whether the ovaries were also removed which makes quite a difference!

I was put on the pill for 6 months non stop to see if having no periods would reduce my migraines as my worst migraines are always the menstrual ones but it made no difference. They also looked into giving me the the implant but when they trialled me on the Progesterone pill to see I would be suitable my migraines went ballistic. Even during both my pregnancies I had bad migraines although my migraines were much much worse when I was carrying my son than my daughter.

You could always try the usual hormonal remedies like Evening Primrose Oil but I personally haven't found anything that works, even things like magnesium don't have good evidence of efficacy. I think one reasonably good study found that many migraineurs have low magnesium levels but when they tested supplementing these people their migraines did not reduce. Sorry thats a bit of an essay either way we're screwed!

mmaya profile image
mmaya in reply to Cat00

That's unfortunately precisely what I've concluded myself too :( I managed to control the hemiplegic migraines with the botox, but this is new for me...I am also too young for this, I'm 43 ...I thought the estrogen levels only start dropping much later.

I suppose, the only good thing is that this migraines last for 2/3 hrs, they don't respond to painkillers but they do go away quick enough.

My normal migraine lasts for 2.5 days on the clock, plus following day to recover...

Thanks for the info.

mmaya profile image
mmaya

Hi ya,

I suffer from migraines since I remember myself, I've been stuffed with different medicine at different times of my life but always on a lot of drugs.

I am now on botox since sept or Oct 2 years ago and I am pleased to say it works wonders.

They are not completely gone, I still get the odd nasty one mostly caused by hormonal imbalance... But there's certainly at least 80% reduction.

It doesn't work for everyone, it is extremely important to know your triggers and use natural supplements every day - b complex,magnesium and co enzyme q10.

I hope it works for you, best wishes :)

Kzwalls profile image
Kzwalls

Hi

There are many different primary headache disorders and some of the rarer ones or newer types do not have a-lot of data on how effective certain treatments are.

We are all different and what works for each of us may not work for the next.

Ive just had my first set of botox jabs and although for about a week it didn’t help (but already in a bad spell) it so far and 🤞🤞seems to have started to take down the intensity even though (still there every day) and some pick axes every day but not as many.

Good luck with whatever decision you make 🤞

K

Bobb_XO profile image
Bobb_XO

So my insurance company will cover the first 2 sessions & I can transfer to the NHS afterwards if I can't afford to keep up treatments if they work.

I'm opting to go for it, purely to see if it works. I'm starting out pessimistic, as all other treatments have either done nothing or made it worse. So, I' figure this can't really do much more harm - fingers crossed anyway!

Here's hoping in 6 months I'll have gone at least 1 day headache free!

GcrewDirector profile image
GcrewDirector

I tried Botox a few years ago after enduring nearly 20 years of migraines. It was painful and unsuccessful. My neurologist had no other treatment options. Then I finally listened to a sister (who I thought was nuts) about MTHFR -- and I finally found the reason why I was suffering so much!

The discovery of the genetic variant, methylenetetrahydrofolate reductase (MTHFR), changed the lives of seven family members who lived with massive, debilitating migraines.

My siblings, our children and an uncle (aging in range from 12 to 77) are now nearly 90% migraine-free by supplementing with a vitamin B complex that includes L-methylfolate. MTHFR limits your ability to convert folic acid (synthetic vitamin B9) into folate (natural vitamin B9). The B vitamin complex compensates for the slow MTHFR gene. Eating foods with real folate (leafy greens) and avoiding folic acid in your diet is also critical to success, but the vitamin supplement plays a major role in the elimination of migraines.

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