hi
i have visited this site many times over the past 7 years ( as long as i've lived with CH's), but never posted on your message board before.

i am 36 years old, a mother of 3 and an RN. i live in ontario, canada and got married 2 weeks ago.
i began having CH's 7 years ago,  and used to get them every fall, for about 6-10 weeks. the cycle then changed a few years back, and now i get them in the late spring/ early summer, and depending on the drugs that i use to treat/ prevent them,  they last anywhere from 4-8 weeks.

my pattern has typically been that i get a CH within 1 hour of waking up, which fluctuates since i work shift work ( 12 hour days and nights). i go from pain free to 10/10 pain, in/around my right eye within 10 minutes. Honest to God, when i discovered Zomig, i wanted to write a letter to astra Zeneca and thank them from the bottom of my heart. this drug changed my life. the problem was, i ended up needing to take it twice a day, because the CH's began happening 12 hours apart every day. I was also on an SSRI antidepressant and being on both, developed serotonin syndrome, which landed me in the ER.

I went to see a pain/ headache specialist, who put me on high dose prednisone, DHE shots and isoptin (verapamil), which worked well to abort the cycle, but the side effects of the prednisone were terrible, and i hated injecting myself in the thigh with the DHE, especially since i could never get proper needles for it and had to use subcutaneous needles. hurt like hell.

soooooooooooooooooooo, this winter, in preparation for my wedding in the spring, i started taking isoptin, 260 mg to try and
prevent them from starting, BUT, got my first CH on June 8th.
they have no pattern at all this time, they come at random times and the zomig does not work as well as it normally does.
I have rolled the dice by taking the zomig out of desperation a few times, but am taking my SSRI only every other day to lessen the odds
of getting serotonin syndrome again.

my MD started me on topamax on wednesday, and i have weaned myself up to 100 mg so far. feel pretty confused, dizzy, tired and clumsy, but the CH this am was no where near as bad as the others
thus far, so here's hoping it's gonna work. if not, i'll be back here looking for advice about occipital nerve blocks.

anyhow, sorry this was so long. glad to have a plce to share and hope i can be of help and support to others here as well.

Congradulations and welcome home to CH.com

try the DHE nasal spray it works better for me , its two sprays in each nostrail at night and when you wake up, its better then the shot, the med name for it is magrainal its DHE  wish you the best, also sence yours are seasonal , its better to get through it with med then do something earreversitial to your body !!!!!!!

A number of us have had excellent response from this abortive and it would allow you to continue your SSRI. Other advantages: cost per dose less than the triptans and the pill form makes it easy to take when on duty.
--------------
Headache 2001 Sep;41(8):813-6  

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.



--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

thanks so much for your replies. i did not know that A) DHE was available in a nasal spray or B) zyprexa was used for CH's.
considering my drug company is giving me a hard time about covering the topamax since i don't have seizures, i can just see trying to get zyprexa covered!!!!! i think i am gonna become psychotic from the pain....... ;) ;) ;) ;) ;)

i think it is really interesting that psych and seizure meds are used interchangably for headaches/migraines/CH's. anyone know more about this?

Kika,
I don't see 02 in your arsenal..please read to the left. Also, Verap is something that is not one-size-fits all.what is your dosage, and how long have you been using it? It needs time to load up in your system in order to be effective. CH is a per-person affliction. It's best you work closely for awhile with your Neuro till you get the right mix.
Consider melatonin at night.............and-and I know this can be touchy........know thatmany here find the other name for Topamax to be "dopeymax", as in, it will make you a space cadet!
MOST  of all, I want to welcome you here........sorry you need this place, but Clusterville will help you learn to keep the Beast at bay.

Huge congratulations on your wedding, Kika, I wish you MANY years of happiness.........and PF(that's pain-free).....

Please let us know how it goes for you, don't be a stranger!

Cathi :-*

The cross-over use of meds from various categories tells you that we have VERY little understanding about the physiology of CH.

If you had been searching the med literature 15-20 years ago you would have seen an endless round of crap shoots going on, trying this and then that. The introduction of the triptans has been one of the wonders for CH folk!!
---------

Even if you have to pay out of pocket for Zyprexa it's affordable and I found that it gave me total, instant relief in 20-minutes.

Hi Kika,

welcome here and congratulations on your wedding.

I am one of those that found Melatonin to be effective - for this and my last cycle - 9mgs at night and usually within two to five days I am either PF, shadows or very minor short lasting hits.

Melatonin makes my life liveable with CH - Not a drug so no side effects and cheap too - well worth a try.

regards & PF days,

Melvyn :)

Cathi_Pierce wrote on Jun 24^th, 2008 at 10:19am:

Kika, I don't see 02 in your arsenal..please read to the left. Also, Verap is something that is not one-size-fits all.what is your dosage, and how long have you been using it? It needs time to load up in your system in order to be effective.

hi cathi

i used to work in ER, and when one would start, i would hide in a patient room and slap O2 on, but it never worked for me.
also, re: verapamil, i have been on 240 mg SR since Feb. my BP and heart rate are pretty low as a result, but hopefully with the "dopey max" ( i think people think i am high all the time now, cause i look TOTALLY zoned out), the combo will work.

thanks for the warm welcome all.

Kika - welcome from another Canadian!  You'll get a ton of information and loads of help and support from this place.

What part of Ontario are you in?  There are a few of us out and about (as only a Canadian would say it! ;) ) and perhaps we could arrange to get together.  

Carol

hi

i am in durham region. whitby specifically.
how bout you?