Diagnosed with Hemicrania Continua...

[Sticks95]

So.. I had my appointment on Saturday and i feel like it went well. He said the Indometacin did what it should have and he 99% diagnosed me with Hemicrania Continua. He then offered me different pills with various side effects and I decided to go for the Botox treatment. So far so good! I feel like a human and I think the future is looking bright. For those of you who are having a bad time with your migraines, if you are offered botox as treatment i really recommend it. Any of you also have Hemicrania Continua? Let me know how things are for you with this condition. X

[Cally01]

That's what i was diagnosed with by one neurologist, vestibular migraines with another and TMJD migraines - by max fac specialist.

Headache everyday which escalated to migraine. Some had aura but those would come in the middle of the night.

Indemeticin was my first med,didn't help at all. Botox over my skull twice - didn't help. All prevention meds were brutal. Nerve blocks didnt hurt and didn't help. I was in a nightmare for 4yrs, spent a fortune!!

NOW- getting my life back slowly 😁 the only thing i take is sumatriptan injections / rizatriptan melts , 10mg amytriptalene at bedtime or a half of a kirkland sleep aid. No prevention meds at alland no OTC painkillers.

Been wearing green migralenses for about 6wks and had 2 aura migraines !! Major accomplishment for me!! The pain behind my eyes is about a level3/4 when i wake instead of 7/8 and escalating to migraine in 10mins - everyday!!

When i get up i put one drop of CBD oil under my tongue and it helps prevent my head escalating and my jaw pain.

I was getting botox into my tmj every 3mths which stopped the jaw migraines - morphine didn't even reduce the pain.

Now i don't need botox👍 feel like I'm winning this battle at last. The first step was changing my diet- no sugar, equal amounts of carbs, protiens and fats, was tough but 2mths in i feel way better.

No more than 2 triptans a wk but i have got to 8 days without needing it so expect that to extend😁.

Good luck 👍 wish you all the best in your journey 😘

[sjwhitfield in reply to Cally01]

Hi I'm takin about twenty Triptans a month, how many were you taking? Botox and preventative meds didn't help. What's cbd oil?

[Cally01 in reply to sjwhitfield]

Hi sj 😁 i was taking a mix everyday of 100mg sumatriptan , a rizatriptan melt and a sumatriptan injection. I was in bed 4-5 days at a time. The world was very black. I had 24 x 100mg sumatriptan and 24 rizatriptan melts and 8 injections from the gp every month!!!

I was aware of overuse issues but just couldn't function at all on any level.

I decided to remove everything. It wasn't easy and took 2wks of terrible pain with nothing but ice wrapped around my head and 12hr volterol rubbed into my temples.

I spent another couple of wks tracking exactly where my pain started. My jaw/ my neck/ my temples and behind my eyes. Botox into my jaw muscles and most pain was gone.

CBD oil is the medical side of cannabis i got it from my herbal gp. Nothing neurology gave me helped at all.

I still get aura migraines but maybe 2 a month. I still get jaw migraines trying to build up so i take a drop of cbd under my tongue and if it's determined to get me i use a sumatriptan injection.

4yrs of daily headaches which escalated to migraine with no relief - today...this june I've had 12 migraines which lasted 18 days total. Thats massive for me. Normally the whole month is wiped out.

Be well 😘

[sjwhitfield in reply to Cally01]

Thanks, at least I'm not abnormal takin so many Triptans

[Cally01 in reply to sjwhitfield]

Nope 😀 not abnormal but it's really not good. Wee all know they say no more than 8 a month but easier said than done when your struggling to live any kind of life.

Good luck 👍

[mle134]

Hemicrainia continua since 2007. My pain is cluster headache strength. Have occipital stimulator. Indomethacin helped. Cannot tolerate it. Benadryl and promethazine help taken in combo. Trying cbd. Not sure of benefit yet. Narcotics don't help mine in fact make it worse. Sigh. You wont find a lot of us out there. Some do find benefit in narcotics.

[Sticks95 in reply to mle134]

I wasn’t able to tolerate Indometacin either but it did take away the headache. I’m curious about CBD but i dont know anything about it. My botox keeps me headache free for the majority of the time, I have 40 injections every 12 weeks. I still get around 2-3 Hemiplegic Migraines a month which are unbearable but its miles away from where i was last year.

[mle134 in reply to Sticks95]

Sticks95, that is fantastic. Can't do the botox either but glad it helps. The cbd is helping so far with facial nerve pain associated with my headache. Haven't used it long enough to really tell if it will help long term