Hello everyone,

I know you can not do any diagnosing here, but I am so fustrated and have some questions that i hope you all can answer so I can help my doctor better by understanding what is going on with me better.

Here is my HA story.

Normal migraines started age 35 after total hysterectomy. Two yr. ago, age 38 they changed.  Out of the blue i started having what i call "peaks and valleys". I have had a constant daily HA for two years now. Usually with a low level pain, say a 3 for my "valleys", then i will "peak" 2-3 times a day.. The peaks can range tho, from a 6-10. I will say i have only been at a 10 twice if I am being totally honest in relation to a pain scale of 10 being "i litterally want to shoot myself" to end the suffering. Usually tho, my peaks are more on the 6-8 level.  My pain is ALWAYS on my left side, behind my eye, just above my eye, and into my temple. Sometimes it is stabbing, burring pain, sometimes it is severe throbbing pain w/ like electrical jolts. My left eye and eyebrow droop remarkably during my peaks. My nose becomes stuffy. I DO have aura with these (tho i have read it is possible to have aura w/ CH).

I have tried a host of preventives, and am also using imitrex stat dose, which really helps most of the time. Sometimes tho, i will have days where the max pains of 8 are hitting me everyday for two weeks, which is when i can no longer take it and i go to the ER. I seem to respond quite well to ER treatment, FLUIDS, MAG, STEROIDS, OXYGEN, PAIN, NAUSEA, DHE. It will bring me back down to my low level of pain or i will even get a day or two with NO HA, which is very rare these last two yrs.

My questions are:

1. Do I have to have a max pain of 10 every time to qualify for CH?

2. Do you have daily low level pain, or do you go completely pain free between your attacks?

3.Has anyone even become manic during a cluster period?  I  have not slept more than 3 hrs a night the last two weeks and i am compulsed to get up and clean, to the point of tearing apart closets, scrubbing bathroom floors, ect in the middle of the night. This is NOT normal behavior for me.

4. Any other thoughts would be helpful. My neuro had suggested Hemicrania continua, but i failed the Indotest, so i want to gather as much info as i can to ask him outright if I fit the criteria for CH.

Chuh, thank you for the link. I have read so much on the TACs but with so many of them responding to Indocin, it rules many out for me since I already did the Indo test......

Thanks for ur reply!

Bob, thank u for the links! The first link u gave me shows the only HA Specialist I know of in Miami, which is so hard to imaging being that its such a big city with pretty good medical care. I am actually trying to get in with that woman....the second link did not have anyone in miami, closest was Hollywood. Of course I would be willing to travel but it listed him as "not certified".....

I actually have to be very careful of how many oral meds I take as I have ulcerative colitis, so I do not self treat. I was just hoping to get my questions answered to see if I sounded like a CH or not......it's been a long and fustrating journey. Thanks again for ur time.

wimsey, THANK YOU!!!! I am so thankful you answered my questions.

To me it seems fairly clear, to either be CH or SUNCT, tho I don't believe it SUNCT as my HA can last longer than the 180minutes.

Between the cycling HA's, the left eye droop, tearing, stuffy nose, and strange fluid filled bumps that i get on my forehead during bad attacks, I would think this might be enough. Maybe i need to keep a better type of headache diary, the one my neuro gives me just has you put a x on the day u have HA and the level of pain. Of course, EVERYDAY last month had an x on it, with the exception of the two days directly after an ER visit that warrented OXYGEN, mag, and steroids. Those two days after I was completely HA free!!!!  I don't know, so fustrated and over this.

I just had my first round of Botox today, so i am excited that maybe that will help. And yesterday I was switched to yet another med, Neuronton, starting at 300mg, moving to 600 in 5 days. I hope it helps!

anyways, thank you so much for explaining things, and taking the time to answer my questions. I know this board looks very strict on the whole "self diagnose " thing, and so I understand that some things shouldn't be answered, but I just feel like Im really stuck in a bind and have been at this for two yrs now, doctor after doctor, med after med. My husband and my young children suffer in all of this also, which is my biggest modivating factor.

Miamigirl, you're welcome, and I second what Jerry (Callico) said above. In addition you ought to know a couple of things. First, botox may work but it isn't a standard treatment for CHs, nor a firstline treatment. The same is true of neurontin. It has helped some, but for the majority of those reporting here, it is an old line intervention for migraines that some neuros tried on clusters. In my opinion, and that's all this is, the standard treatments should be tried first. That's the advantage you have with a headache specialist over a general neuro. And even then, treatment must be driven by your own knowledge and experience in consultation with your doc. Keep us informed, and God bless. lance