Hello,
My name is Sarah and I feel guilty for having to ask this question. I in no way want to belittle anyone's condition because I have seen this beast in action.  (you can skip to the questions at the end if you don't want the whole history)

First a little background. My father had CH, he committed suicide (don't know for certain if it was the CH or something else--I'm sure they didn't help). My brother has sometimes chronic/sometimes episodic CH and my heart breaks for him and his family every day.  Both my brother and father would have unexplained bleeding on their heads. The same dr. has seen this on both of them. (he worked so hard to help my father--but this was over 20 yrs ago--the fact that this dr. even came up with CH is amazing)  When I as in my 20's, I had one episode of this bleeding that was pointed out to me by a co-worker. As you can imagine, I freaked. I did not get a headache and placed it in the back of mind. (never forgot it) Looking back, I have a vague memory of having some very bad "allergy" related headaches that no amount of medication would alleviate. I do remember it was in Oct-Nov. because I couldn't understand why allergies (which I'd never had before) would be so bad that time of year. I also ended up at a neuro when I had a headache so bad that no amount of prescription pain killers would help. And anyone who looked at me knew I had to have a really bad headache. (I think the eye may have been drooping a bit) I was told it was because my neck muscles were so tense and went to PT.  It never helped. One day the pain was gone.

Fast forward 20 years. I come home from my son's soccer game and am so weak I can't stand or stay awake. I have a history of low BP (as do my father and brother) so I took my BP. It was 96 over 53,(which is close to normal for me, however my heart rate was 46 (not good). (I'm a good 60 lbs overweight) I called my dr. who told me to go the ER right away. I had a friend take me. Shortly after arriving I was blindsided by this pain on the left side of my head. My friend looked at me and went to the nurses station immediately because not only was my face droopy on the left side, but my speech went to this east Texas drawl she had never heard from me before. By this time I was rocking in my seat. The ER care was the worst, and hours later I was taken back.  By this time the pain had come and gone several times. My BP and HR were "high normal", and when I tried to point out to the dr. that I was in the worst pain in my life, and that my BP is normally very low, so it was high for me, she blew me off. You can guess the rest--I was tested for all sorts of heart conditions, given a CT, told it was a migrain (nevermind I was in the HALLWAY, next to the nurses station, of a very busy ER and the noise and light were not bothering me one bit, but the pillow was killing me and I couldn't lay still) was given a shot of something and told to go home and rest. Two days later I was woken out of a deep sleep with at least a kip8. I paced and rocked and it finally subsided. I had a couple more episodes after that. This was last November.

I am very fortunate that my GP knew of my family history, was familiar with CH and did not say any of the many stupid things most of you have heard. She sent me to a neuro who amazingly not only dx me with CH, but gave me a name of the specific CH he thought I had. (for the life of me I can't remember the name). He prescribed indomethacian and it really seems to work. (he had me take it every day for 2 weeks, then as needed) Strangely I feel guilty about his because I know so many who suffer for years with no relief, so I questioned the neuro about the dx. He said that since it was caught early, that the pain pathways didn't really have time to form a memory on the nerves, so the medication works.

This makes sense to me, but I feel guilty for even saying I have CH because I don't have to suffer for as long, or as in much pain, as my brother does. (or many of you)

So, that was a very long way of asking--has anyone else been dx early on and had similiar results?  (maybe because of family history) Does anyone else know if they have low BP when not in a cycle? Also, has anyone else had the unexplained bleeding?

I had a CH last night. I happen to be up late, so I was able to take my meds early.  I'll stay on the indo for a week to hopefully keep it at bay.

Thanks for any help you can give. :)

Hey Sarah!  Having seen and now felt them for yourself, be thankful for every pain free moment.  No need for guilt to be involved!

However that being said, I must admit I feel similar guilt.  I have had CH for 5 years, but did not see a doctor until just 2 years ago.  My primary care physician diagnosed me correctly the first time, even prescribed me verapimil, imitrex, and said that if trex didn't work he would get me 02.  I was so lucky!  

Unfortunately subsequent visits to supposedly more qualified doctors resulted in incorrect rediagnoses and I was taken off the verapimil.  Not to mention the fact that my own aloofness prevented me from getting further attention.

Plus, my CH seem mild compared to a lot of people.  I haven't had more than a few Kip 10, and I've managed to construct a regimen of abortives that keep me below kip 8 about 95% of the time.  My chronics have traditionally been 5-10/week max, not usually having more than 1 per day and not usually more than a week or so without a day of respite.

So I can relate to feeling unjustified saying I share a condition with people who are clearly suffering much more than myself and in some cases have been for many years.

From what I hear indomethacin is a common treatment for a similar but functionally different condition.  Other people have written that doctors often prescribe indomethacin before confirming a CH diagnosis, the reasoning being if it works, it's not CH.

Can anyone confirm or expand on this for Sarah?

Hope you pain free days continue!

Brian

Dear Sarah

I am sorry you and your family suffer as you do, but as you already know, there is a genetic element of CH and probably other headache types too and it can run in families.

There are studies currently underway to try and identify the rogue gene for CH, but as far as I am aware, that hasn't been achieved yet.

As for quick dx- I was one of the very lucky ones, diagnosed 3 weeks into my first cycle, for the same reasons as you. Great GP who knew it wasn't migraine and sent me to a neuro who knew his stuff.

As for the Indomethacin- as Brian says, it is usually used as a diagnostic rule OUT for CH, i.e. given as a diagnostic drug and  if it works, you have one of the indomethacin responsive one-sided headaches not CH (there are quite a few of these types which mimic Ch in some symptoms but are not CH)

I don't think this is absolute though, it works for almost no CH'ers, but there might be a small number it helps, and if it helps you- wonderful! I just wouldn't want new people here thinking it is the answer, it probably isn't but well worth a try because if it is going to work, it works bloody fast as it did for you- literally days only.

r.e. the BP- I don't know but I have low BP naturally and it rises during cycle and attacks, then reverts

Wendy

ADDED
P.S. If your neuro says you have a "specific type" of cluster headache, my guess would be that he is a little confused as CH is CH. What he probably meant was that you have a specific type of unilateral headache- maybe paroxysmal hemicrania which is indomethacin responsive or one of the others such as SUNCT.