Has anybody who suffers from fibro a... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Has anybody who suffers from fibro and chronic migraines had botox for migraines?

headingforretirement profile image

I am about to have botox for my chronic migraine but am concerned that the treatment might make my fibromyalgia worse. I'd like to hear what your experience is if you have both migraine and fibro and have had botox.

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25 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

worth having a look at this. works for chronic but not episodic migraines which I suffer from..

migrainetrust.org/living-wi...

in reply to desquinn

Ive read it briefly desquinn do you know if NHS will provide this? I am on sumtriptine and the leaflet states not advisable over age64. So I was wondering what I would have to hand next year- maybe this will sort it out?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

as it is licensed by the MHRA its available to the doctor but I think you would have to ask if its ok for you as a patient.

I was only vaguely aware of it, but as I have less than 14 days a month with migraines (thank god) then I would not get it.

in reply to desquinn

dont think I would qualify either!

LadyBarb profile image
LadyBarb

I can only ever speak very personally, and I'd be concerned about botox, although I have heard that it's successful in treating migraines.

I've cleaned my system up re diet etc., and have found that Imigran, by Glaxo works for me (I get 'cluster migraines'), but no other manufacturer does, as the generics all make me feel sick, but then I'm very 'sensitive' to countless meds.

From the link desquinn put up, it seems that the incidence of pain occurring elsewhere is very low, but I obviously haven't the slightest idea how that pain ratio would work with someone with Fibro.

I think it's a matter of very personal choice, and hope someone can come forward who has had experience of the Botox Migraine treatment and having Fibro and offer you hope.

Migraines are a real curse and to have been offered the treatment, you must suffer very badly indeed. ❤️️ Love, Barbara xx

headingforretirement profile image
headingforretirement in reply to LadyBarb

Thanks for your reply, Barbara. Unfortunately Imigran doesn't work for me and I seem to be at the end of a very long journey through all possible medication, leaving just botox. Having read all about it, I have severe misgivings about it.

jennifermccune99 profile image
jennifermccune99 in reply to headingforretirement

I have migraines on a daily basis. I've had nerve blocks done twice only one worked the other one didn't. I've had Botox if you have asthma do not do Botox. It only made mine worse

Thanks for your comments

LadyBarb profile image
LadyBarb

Hi HFR ~ all I can do is assure you that having relief from Migraines is like heaven on earth! ❤️️😊

Given what you must go through, untreated, as I did for countless (!blank, blankety, blank!) years, I'd go for Botox under these circumstances. It has been proven to work and the Botox only lasts for 12 weeks or so.

Ask yourself: Could you take a chance on 12 weeks of being migraine free, against 12 weeks of what "seems" like a low chance of aggravated Fibro? Again, it's always your very personal decision to make. ❤️️

Apart from Fibro, do you have any other medical conditions that you feel your GP/Consultant hasn't considered sufficiently seriously, in your personal opinion, or questions that haven't been answered entirely to your satisfaction..?

Feel free to share any concerns, as you do sound worried ~ BUT, I must state that in the end, you MUST get the answers you need from a professional, if you can't find someone on here who can share having a Fibro/Botox experience. Blessed Be, love, Barbara xx

kellythomas profile image
kellythomas

A lady told me it worked for migraines but I’m sure about with both. I had chronic migraines with also fibromyalgia and Multiple Sclerosis . I had a Daith piercing done and Migraines been gone 4 months now . Had a slight headache 2 times in the last 4 months . Hope you find your relief also

LadyBarb profile image
LadyBarb in reply to kellythomas

Hi Kelly, just a query? Did you mean you're 'not' sure about with both Fibro and Chronic Migraines? B xx

kellythomas profile image
kellythomas in reply to LadyBarb

I’m not sure if the Botox works for migraines caused by fibromyalgia . I was looking into until I did the piercing and now I don’t have the need to .

LadyBarb profile image
LadyBarb in reply to kellythomas

That's a very interesting point Kelly ~ I'd never had migraines before I got ME/Fibro!

I didn't associate the two, or the Fibro causing the migraines, because I'd had headaches for as long as I can remember, and was on adult OTC medications for headaches from an early age.

Funnily enough, when a migraine is coming on, one of the signs I get is pain where the piercing is done, and tend to rub it, and it actually makes a cracking sound!

Must think a bit more about the piercing as it'd be a benefit to get off of my ever increasing need for Imigran with the Migraines increasing.

Thank you ❤️️ for helping me see things rather differently! B xx

kellythomas profile image
kellythomas in reply to LadyBarb

Before My migrains would increase when my fibromyalgia was worse. But to go from the extreme of pain and dysfunctional periods I was having to slight discomfort I can tolerate is a blessing. . I hope I was able to help . When I feel like a migraine would be coming I get a little ear ache and that it’s gone away rather quick .

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to kellythomas

my personal experience is that migraines are more likely when I am feeling run down or stressed. So fibro being worse would probably contribute.

in reply to kellythomas

kellythomas can I ask you what Daith piercing entails?

kellythomas profile image
kellythomas in reply to

Sterilization of jewelry for an hour at least then they clean the area on your ear, mark where the needle will enter and exit . Watch them open clean supplies (needle). Then then they push needle through the cartilage / pressure point . It’s rather quick and it’s more pressure then pain that you’ll experience.

kellythomas profile image
kellythomas in reply to

An hour of jewelry sterization

Then they mark the area and unpackaged fresh needle and supplies . They then pierce through the cartilage and pressure point . When the needle goes in there is a lot of pressure on that side but it goes away when they put the jewelry in. It is pretty quick. Takes about 6 months to completely heal. They will only do one side at a time . Because you can’t sleep on that side to assist the healing and prevent infection. You clean with saline water.

Nicollet profile image
Nicollet

Yes, and it made me much, much worse! It didnt get rid of the migraines and kicked my fibro into full flares for 2 months till it wore off.

headingforretirement profile image
headingforretirement in reply to Nicollet

Nightmare. My first botox session is supposed to be tomorrow so I have to make a decision or not whether to have the treatment!

Nicollet profile image
Nicollet in reply to headingforretirement

The bad part is if you have a bad reaction there is NOTHING they can do. Look up botox reactions,they arent pretty. Migraine botox they use 5xs more then cosmetic too.

How bad are your migraines? How often? Your drinking enough water? Keeping a food diary..for triggers?

Have you tried the herbal vitamin cocktail?

seren1970 profile image
seren1970 in reply to headingforretirement

I’ve had it for vanity lol didn’t aggravate my fibromyalgia if I had migraines every day I would definitely have it xx

Nicollet profile image
Nicollet

My pain management dr. Prescribed oxygen and it works!!! I have suffered for 30 plus years trying EVERYthing!!! The botox keep in mind isnt like a couple shots either...its a LOT. I had over 20 injections. They start at the top of your head 3 or 4 across and work down to your shoulders.

headingforretirement profile image
headingforretirement in reply to Nicollet

Oxygen? Does that work for both the migraines and fibro? Could you tell me more?

Nicollet profile image
Nicollet in reply to headingforretirement

I had to pay out of pocket for tge machine it was around 1,500 but it makes its own oxygen. When i feel a migraine coming on I wear it about 20 minutes and there gone!!! No more migraine meds. Bad thing is you have to be at home and its not for fibromyalgia, only migraines.

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