Migraine /Managing chronic pain docum... - National Migraine...

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Migraine /Managing chronic pain documentary

Francesca21 profile image

Does everyone interested in migraines know that on channel 5 at 10 pm Thursday 27.5.21 is a docu about living with chronic pain and Im so excited as botox and cgrp inhibitors havnt worked for me, a man is being given implants to help block the pain receptors. I need to know what the criteria is for this, my next neuro appt is july. Just thought people may like to watch it.

23 Replies

Here is a link to the program webpage:

channel5.com/show/how-to-li...

Thanks for sharing, I'll be sure to tune in tomorrow!

Thanks for letting us know, will definitely be watching that.

Thanks for sharing this, and the link, as I couldn't find it on the Channel 5 or My5 search.

I cant find it on the my 5 link either 😩

I eventually found it simply going through the tvguide menu for tonight (Thursday 27th May 21).

Check out journal speak with Nicole Sachs, check out unlearnyourpain.com by Howard shubiner, get the book the great pain deception by Steve ozanich, the book the divided mind by dr John sarno.

This is your beginning of healing, good luck.

Thanku for this!

Scottlondon thanku so much for this

Botox and CGRP inhibitors no good for me either . I've also tried GON block and 9 oral preventatives without success .

Spoke to my neurologist last week and he's given up on prescribing me medication .

Went vegetarian , stopped drinking alcohol , cut out caffeine , none of it makes a hot of difference and migraines have progressed to daily.

What to do next eh ?

Francesca21 profile image
Francesca21 in reply to purge63

Oh no ! Im not sure what G o n is ! Will google.occipital nerve stimulation may be an option but surgery id rather avoid.78% success rate alledgedly.amitriptyline/nortriptyline alongside propranolol worked well for me fpr ten years.then stopped.have u tried 31 botox injections also? I have x 2 .no joy. Mines been permanent for 14 months now. And unfortunately some of my triggers are unavoidable, but i do have some kind of life , not the one id choose but lots people qorse than me. I gave up sugar/processed foods/alcohol/dairy/carbs. Its a tall order, didnt help. Am keeping to some of those things now but not all. Good Luck

Ah sorry re read that, u did try botox alsoDifficult to see in the sunlight- ive retired early and came to sit on a beach alone for wks to see if that helps.see neuro again in july.

GON stands for greater occipital nerve . They inject an anaesthetic such as lidocaine along with a steroid into the nerves .I can't take beta blockers as I'm asthmatic , but I've tried anticonvulsants , antidepressants , pizotifen , candesartan , erenumab , fremanezumab , Botox , all to no avail .

Hope the peace and quiet of the beach is helping .

Good luck with your consultation

Francesca21 profile image
Francesca21 in reply to purge63

Wow sorry that didnt help u , but am hopeful its something i have tried yet thats not as invasive as the implant as really dont fancy that. Youre the first person ive came across similar to me that botox and fremenuzab havnt helped at all. Are u male or female if u dont mind me asking ? And rough age? I had acute 24 hr ones but now just constant / along with nausea and tingling face. Cant bear elec light and noise. But any stress at all rockets the score which at best is a 4 and worst 9.5 Have to lie down if its above an 8.5

Good luck and keep hopeful and trying to live the best life u can xx

Sorry am useless and no concentration at all i see your male. Is the 63 referring to year you were born? 21 is my house number and this year 😂born ‘62

Yes I was born in '63 . My migraines started becoming a problem in my late 40s and I started preventatives when I was 48 .

Ever since then they have become more and more frequent and I now get them daily except for the odd day here and there .

I don't have constant pain but it can come several times a day .

Fremanezumab actually made things worse - more frequent and harder to treat.

The best treatment I discovered was full fat coca cola . I read about it on the internet and thought I'd try it .

It gives me relief more often than not if taken at the first signs of migraine. I use Coke and espresso to keep my medication use down , so as to avoid MOH . Also I use a cold compress and a spiked massage ball.

Don't know how you bear them constantly with no respite it must be awful!

Good luck and hope your time on the beach helps

Francesca21 profile image
Francesca21 in reply to purge63

I dont use any meds at all since October 2020 as in may 2020 was guilty of rebound headaches from analgesic abuse. I was a nurse and obv never overdosed and astounded to learn and be accused of abuse! I now know its a term for health professionals to realise how desperate u were. I too went on prophylactic meds as 48. Ive never heard of coca cola for headaches and will try it?! Is it the caffeine that is the active ingredient do u think?Ive tried magnesium/peppermint oil/cefaly machine/

I refuse utterly to cut out caffeine and in england have one cup coffee a day and one of tea . 5 pints of water.

In greece at moment im having maybe 2 frappe a day. And wine in evenings .

I score pain 3 times a day and at moment im a 4-5 all time . Which is better than the 7-8-9 i was in england. acceptance washed over me now , its not a life id choose, but, i do have a life. I read swim and walk - require peace and calmness . Dont get much facial tingling (an upset trigeminal nerve)

Or nausea these days. In 2020 i had anti emetics every day. Throu reading other peoples stories on migraine trust website

I realise so many worse than me

purge63 profile image
purge63 in reply to Francesca21

I don't think it's the caffeine alone in Coke that helps , as a standard 330ml can only contains 32mg of caffeine ; you get more than that in a cup of tea . Diet coke triggers my migraines due to aspartame artificial sweetener . I've been using Coke since 2018 and it's been a lifesaver.

I have always drunk s lot of tea but now only drink decaf . I use caffeine as a medicine only via Coke and espresso .

I've tried magnesium and also B2 but not cefaly or other devices .

I use sumatriptan nasal spray alongside prochlorperazine antiemetic and either ibuprofen or more often dispersible aspirin in Coke .

I managed to avoid MOH as I learned about it whilst still episodic .

None of the preventatives I've mentioned before has helped one bit - just given me some unpleasant side effects.

Where is your consultant based ? Mine is in Birmingham. He is running out of ideas to treat me but I am constantly trawling the internet for any information that could help .

What hospital were you based at during your nursing years ( if you don't mind me asking) ?

Francesca21 profile image
Francesca21 in reply to purge63

I worked 26 yr north tees general hospital Stockton upon Tees. (Maternity) Neurologist is Dr Paul Dorman of royal victoria infirmary newcastle upon tyne. My triggers are light and noise. Small children. And having to shout loudly at my elderly parents one of whom refuses to wear a hearing aid! Score tends to rise when get heart rate going during brisk walks but i do them anyway as addicted to exercise and pools been closed a lot during covid. Local hospitals to me declined referrals due to covid, hence having to go private with Dr Dorman. He told me about cefaly. Its 363£ but u get 280£ back if not work for u in 60 days. Google and fone them- theyre so so helpful! Dorman has a specialist interest in headaches , he wouldnt discuss next option til i gave 3 x fremenuzab and 2 x botox a chance. Good to hear your thoughts, keep researching! I used to research every day , ive kinda stopped since the acceptance washed over me.

Have u bn on migraine trust website?

Keep in touch .

Francesca21 profile image
Francesca21 in reply to purge63

Also, I only use occasionally when desperate to alleviate pain , but diclofenac suppository can reduce a score of 9 to a manageable 6 for me. Not pleasant , but when your desperate.....

purge63 profile image
purge63 in reply to Francesca21

Definitely ! Whatever it takes ! Coke is supposed to be bad for you with all the sugar but I don't care , I'd be lost without it !Yes I've been on migraine trust , I get the magazine that they put out every 6 months . I've also been to one of there 'Manage Your Migraine' events in Birmingham 4 years ago .

I also go on American sites ; migraine.com and migraineagain.com.

Have you ever watched the migraine world summit ? It's on every year around March . They show around 30 interviews with experts from all over the world on different migraine related topics . They're free to watch for 24 hours and it runs for 8 days . You can also buy the whole package and watch it at your leisure. I've learned a lot from watching it these past few years and in the US they use a lot more drugs off label for prevention.

On migraine.com I think they have a list of around 100 !

I've failed 9 oral preventatives and the consultant in Brum thinks he's exhausted all avenues.

I'm waiting to start another preventative that I suggested myself. My GP won't give it to me until he gets the letter from the consultant though as it's off label .

I've failed 13 in total (9 oral and 4 injectables ).

How many and what preventatives have you tried ?

Also have you heard of or tried the daith ear piercing ?

Francesca21 profile image
Francesca21 in reply to purge63

Yes had daith pierced a month ago!My preventative for when i had the acute was propranolol and amitriptyline. Worked well 10 yr then stopped. Tried all the triptans. Duloxetine- awful drug- took months to ramp up to max dose and months to wean off. Nortriptyline less nasty than amitriptyline but all docs use cheapest first in all cases of any illness.now ive bn off all drugs for months n months and i can see how sluggish they made me. Even tho i am the busiest person i know. Ive even wondered if its burnout! Then tried fremen and cefaly and botox. Have u considered the implant ? Docu on channel 5 last wk. Managing chronic pain.

purge63 profile image
purge63 in reply to Francesca21

I presume the daith piercing was no help ?I've been considering getting mine done but I'm dubious about it having any effect . I'm willing to try anything if there's a reasonable chance it will help.

I saw the doc on 5 last week. I think that procedure is for people who get no respite so maybe you're a candidate.

I hope it never gets to that stage , but my migraines have been going in one direction and it's downhill all the way .

Duloxetine has never been offered to me but I see that it's an antidepressant.

I've tried amitriptyline , venlafaxine and mirtazapine from that category with zero benefit.

I know exactly what you mean when you say the drugs make you lethargic .

It's not until you stop them that you realise how zombified you've become . I had it recently with pregabalin : another waste of time . Just saps your energy and constipates you.

Maybe we'll get there one day

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