Hemicrania Continua

[Captain Deb]

The doc has me on Indomethacine as a diagnostic tool.  If it works, I have hemicrania continua or  paroxysmal hemicrania.  If it doesn't, I have a form of cluster headache. Both are forms of Trigeminal Autonomic Cephalgia. A paper I'm trying to read describes these as "an excrutiating syndrome and is probably one of the most painful conditions known to humans. Female patients describe each attack as being worse than childbirth." Lucky me!

Captain Deb

[Captain Deb]

OK folks--my hemicrania is continuing!  Woke up feeling like someone was poking an icepick into the back of my head! Janet, my new best friend, gave me a link to a medical paper on these and it said most migraine meds don't work on these cuz they aren't really migraines, but injectable sumatriptan(Imitrex) works pretty well. My doc had given me a sample a while ago and I stumbled to the head and shot myself up--OUCH!!! I had decided I was NOT going to have a repeat of the crap I went through 2 weeks ago with one of these whoppers. Well, the stuff worked pretty well, actually and I went back to bed for a couple hours.  Janet called me mid-morning and we talked about 45 minutes.  Boy--we have so many of the same symptoms--finally found someone who's been going though the same stuff!

Anyway that's my story and............you know

Gotta get off the puter--my head's startin' ta hurt--don't know if I'll be on the call tonight--I think I need ta be in bed!
Love you all
Capt Deb

[Gennysmom]

I'm sorry Deb!!!  Hope you get better soon!!!

[Janet]

Deb,

See if you can get your doses of Indomethacin changed to 25mg three times a day and 75mg extended release at bedtime. Take your first morning dose 1/2 hour before you get out of bed with a little food left at the bedside. I think the Indomethacin has worn off when you need it the most, when getting out of bed. It might be that you need more even coverage and a whole night is too long a time between doses. Or, you could try and take your last 50mg dose of the day as late as you can and your first dose in the morning as I mentioned above.

When you get this last headache under control, regroup and see if more even coverage helps. Use the warm pack when your medication is starting to wear off and your new medication hasn't taken effect. Sounds like a lot of work but I honestly feel you can get these headaches under control. 

Call me anytime and I can call you right back to save you the phone charge if you have any questions.

Also, I have been reading some info on melatonin to help with hemicrania continua.  They claim that the moleculer structure is the same as Indomethacin.  I don't know if it works but there seems to be more and more info out there on the subject.

Janet

[Windsong]

Janet,

Hi. Are you perchance a doctor or a  pharmacologist? i only ask this as i was wondering from your assured take this do that post that you might be. I haven't been reading all, so forgive me that I don't know your history re An.

perhaps you were only relating your own experience...

In any case, sounds like Deb needs some help for her head pain. I figure her doctors might have an answer? So Deb what do they say?

be well,
Windsong

[Janet]

Hi windsong.

I'm a RN (labor & delivery, recovery room and the operating room) and I had an AN removed 2 years ago followed by severe daily headaches.  Even though I had lots of experience with helping patients with pain control and have given birth to 6 of my own kids, nothing prepared me for the severity of pain of AN headaches. I never knew such pain existed. The lack of answers regarding AN headaches and how to treat them was distressing. Headache specialists and neurosurgeons don't seem communicate much. I still can't find any headache studies that address AN headache patients as a unique population.  I really felt I was on my own. Finally found a headache neurologist that gave me a diagnosis of hemicrania continua which is not specific to AN patients. Still not many answers to the cause only that Indomethacin works for this type of headache. She was the first and only doctor that gave me useful information on treating the headaches. 

I started Indomethacin 1 year ago and found that tweeking the times really helped. Morning was really a problem because it wears off before you wake up unless you take the extended release that works longer. I get Botox injections in the back of my head, shoulders and neck and that allows me to go longer between doses so I don't need the extended release anymore.  I'd hate to see Deb give up on the trial if timing was an issue. I hope it works for her. Pain control is an art.

I am thankful for the treatment but still looking for a cure.  As always, I appreciate any info anybody finds out there.

Janet

[Windsong]

Thanks Janet. You're quite right about how headaches can be a real puzzle, not only what kind they are but how to manage them.  I had  a period of bad ones post treatment with fsr (about 3 months later) and didn't really get fast action to handle them myself, but fortunately mine settled down and if i get any now(cross fingers) tylenol works. You are right about not too much being out there about An headaches. That's another reason why sharing and posting on a forum like this is so very helpful. And I hope Deb finds relief soon.
Best wishes,
Windsong

[Captain Deb]

AAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hemicrania continua continued.  I'm going to forward Janet's post to my Neuro doc if I can figger out how! Woke up with severe pulsatile tinitus and an elephant sitting on my head. I had to get up and make myself something to eat before I took the Indomethacine, which really got it going.  (Dr. Loves gone fishin') Weepy eye and runny nose, too. Trying to wean myself offa the hydrocodone, too, so I can see if the Indomethacine is really working--not yet apparantly!  Pain bad so I took one (hydrocodone).

This paper I'm reading says cluster attacks can be triggered by exposure to oil-based paints! I use odorless (expensive) mediums and brushcleaners and you really can't smell anything in my studio, but that doesn't mean there are no fumes I think--maybe I need to go back to being a watercolorist! Paper is from jnnp.bmjjournals.com and is titled "Trigeminal Autonomic Cephalgias" by Manjit and Goadsby if you are interested. I sure appreciate all the support I get here--I love you all!

Capt Deb

[Gennysmom]

Boy, when you google it, there's a lot of stuff out there about this.  Very interesting.  I emailed my aunt a couple of the posts, but she was very non-specific as to what she was taking.  Her neurologist has her exercising for an hour 6-7 days a week, and she said that that, as well as adjusting her medication is helping.  I'm still not sure what she has as she just calls them migraines, but I can tell they're much more than that.  I hope to talk to her more when we're on our trip.  I'm sure glad that I don't get many migraines anymore, and I hope my surgery doesn't trigger anything. 

Good luck in getting it regulated Deb!!!  I hope you can keep your oils....although I really like painting in watercolor too.  For the last 10 or so years though, I've been working with chalk pastels.  I love the way they layer.

[Larry]

Gee Captain Deb,

Did ya hurt the elephant???

My sympathy, empathy and other thy's go out to ya. If the anti inflams help ya, I reckon ya should talk to ya neuro who flung dung about cortizone injections in ya head - its ok, they work for parrots as well. The injections don't hurt coz they give ya anaesthetic first (very small sting). Might help ya.

Either that or the good ship PBW goes round the little island called Australia and docks a bit north west at Papua New Giuinea. The local 60 minutes did a thing on this cannibal tribe there. This 6 year old boys parents died suddenly, now they think he's the devil so they gunnu kill and then eat him (warts and all). One way to get reid of the headache!

Laz

[Captain Deb]

Woke up with another whomping headache --will try to take the Indomethacine just before bed this time. Went back to bed after getting up and eating a bowl of shredded wheat and takin' pill. Slept till 2:30!  Good thing it's a holiday or I'd feel like a lazy slug! Gettin' a little perturbed with not goin' out and havin' fun outside like most folks. I was doing a lot better a few months ago, but was taking a few pain meds, too. The literature I've read on both cluster and paroxysal headache say they can be remittant, which means they go into remission for a few days to a few months.

 No pain meds today, only 1 yesterday and 1/2 the day before! Yay me! I gotta get rid of the every morning headache so I can go back to the gym in the morning(and not have to take pain med afterward!)
This stuff is irritating my tummy badly--I'll probably pack on a few pounds cuz my tummy hurts when it's empty and I don't think chips and my favorite chipotle salsa is the thing to eat--thank God for shredded wheat!

Anyway, thanks for all your support, Wenches and Blokes! Gunnu (great Lazword)call my doc tomorrow about the timed release Indomethacrap. Phyll called this AM and I was kinda out of it and coudln't talk--she's such a positive force of nature!!

Talk to ya later
Love, Capt Deb

[Captain Deb]

Gee Captain Deb,

Did ya hurt the elephant???

My sympathy, empathy and other thy's go out to ya. If the anti inflams help ya, I reckon ya should talk to ya neuro who flung dung about cortizone injections in ya head - its ok, they work for parrots as well. The injections don't hurt coz they give ya anaesthetic first (very small sting). Might help ya.

Either that or the good ship PBW goes round the little island called Australia and docks a bit north west at Papua New Giuinea. The local 60 minutes did a thing on this cannibal tribe there. This 6 year old boys parents died suddenly, now they think he's the devil so they gunnu kill and then eat him (warts and all). One way to get reid of the headache!

Laz

Well, I'm ready to flippin' filet and fry up this flippin' elephant that insists on takin' it's flippin' NAPS on my flippin' cranium! AAAAAAARRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have had several cortizone injections in trigger points in my neck/shoulder are, but the doc said he don't do heads! Do they have headhunters there?  My last headache I begged Dr. Love to cut off my head, but he wouldn't do it!

Capt Deb

[Obita]

I feel real bad about all the headaches I have been reading about on this board.  As if the trauma of a tumor isn't bad enough, dealing with balance, deafness, facial paralysis etc... then on top of it, pain?  For years?  My heart goes out to all of you.  Kathy

[Rayinpa37]

after deb posted a reply to a question i made.. i googled the term and as i read it .. i felt this was like a light on my situation.. i am calling my neuro tomorrow.. as i was anyway.. they started me on medrin/midrin (spelling?)   i sleep, pain comes back, take pill.  sleep more...   nice way to live.. so i tend to just suffer thru the week..

but this last 2 weeks have been horrid...

starts with severe tinnitus, stiff neck, pulsing pain in the right temple (AN Side), feeling of swollen eye.. nausea, sensitivty to light & sound.. severe balance problems.. similar to that i had week of the surgery... and depending on severity.. stumbling and falling.. have missed 3 days of work in last 2 weeks from these damn things.. i hate living on meds.. i did it for 11 months post surgery but feel i am heading back...

still having bad facial ticks (i feel . no one says they see)  i find if i take whatever pain med i am on, with skelaxin (muslce relaxer) and HOT shower on neck.. helps some.. but limits life a bit.. so i am hoping the meds listed here on thie discussion work.. kepping fingers crossed

[Larry]

Hey el capitarnee,

I'm surprised they don't give you cortizone in the head - ask other neuro who dee whatsits.

I find that ice packs relieve the tension a little but it gets too cold.




Laz