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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Greetings
        
(Message started by: Darsynia on Sep 1^st, 2005, 4:45am)

Title: Greetings
Post by Darsynia on Sep 1^st, 2005, 4:45am

Hi I'm ~~Jessica~~ Darsy (hate my name, bleh), and I've just found this excellent site through Google. I was diagnosed with these headaches in August, and have been having them for about three months now. In fact, they're so new that I am going to abstain from filling out your survey until I know more about my specific episodes--I want to provide helpful information, not rush to fill something out incompletely.

Let me just say now that I'm nearly in tears to find out the number of people who share this affliction--tears of happiness and sadness. I'd gladly be the only one in the world with it if I could spare anyone from this.

So far, I've been lucky--as far as luck goes, with these things. Which is to say that right now, tylenol does the trick. Of course, now that I'm getting nearly four a day, I'm going to have to start trying something else, or suffering through a couple, because I'm verging on the maximum dosage according to the bottle...

The main question I have is twofold:
1) I have been advised by my family that it is quite possible that I have sleep apnea. I have a great aversion to doctors, and have managed to avoid bothering with getting checked out for the past year--but I hear that apnea can bring on/aggravate the nasty monster of mine. Is this true?
2) I cannot seem to cure myself of my skewed sleep schedule. Try as I might, I end up awake all night and asleep during the day (and so far, I don't get headaches ~~at night~~ when I sleep). I thought I'd ask if anyone else has had a similar experience. It is quite possible that this is a personal quirk, but I seem to recall it starting around the same time as the headaches.

My symptoms so far have been relatively 'mild' (which is to say, I have only had them for three months, and I can still function pretty well), from what I've read. Left side, directly over my eye, watery eye and runny nose, ~~kill me now~~ incredible pain. In the past two weeks I've started to get more than one attack per day--which means they are escalating at an alarming rate, considering I'm up to 4 now. I also have only just begun to feel almost a phantom pain, which I believe is a direct result of my fear that I'll get an attack. Coming from someone for whom tylenol works, the 'premonition' that I'll get an attack shortly is a godsend, although lately (the past couple of days) they've been faulty--a warning 5-10 minutes before they hit isn't all too terribly helpful.

I admit it. I'm scared. When my doc diagnosed these, he told me that the longest run of them would be three months. Now, he's a family doctor in the backwoods of Western Pennsylvania, but it seemed comforting at the time. From what I've read, it's also unrealistic. Knowing there are more of us is saddening, but incredibly helpful.

Title: Re: Greetings
Post by jcmquix on Sep 1^st, 2005, 5:52am

Hi Darsynia...

Welcome.. Sorry you have to be here under these conditions...

You are in the right place for CH.. this site has the BEST supporter's and the most information that you will ever find on CH....

The Best advise about this site is to Read, Read and Read more, check the links to the left also...

Print out all of this information that you can and take it to your Dr... the collective information here is more than any Dr has learned in Med School about CH..

Did your Dr put you on any Med's ? There are many different threads here on Preventives and Abortive med's.. Some are Alternate and some are Script meds...
Consult your Dr before you make any decisions !!

Check the Threads on Melatonin... Its a Dietary Supplement that might help you get to sleep at night, it also helps to relive the night time hits if you are getting them. Its an OTC that alot of people have found relief with.

More CHer's will be along shortly to help also...

Just remember that you are not alone, the lights are on here 24/7/365, if you need to Rant, Rave or just Talk to someone...

Hope you get some PF time Soon !!!
Charlie

Title: Re: Greetings
Post by Bob_Johnson on Sep 1^st, 2005, 6:41am

There is sufficient evidence of a link between apnea and clusters that, if your doc is suspicious, it's worth considering a sleep evaluation study.

: Headache. 2004 Jun;44(6):607-10.

Obstructive sleep apnea and cluster headache.

Graff-Radford SB, Newman A.

The Pain Center, Cedars Sinai Medical Center and UCLA School of Dentistry, Los Angeles, CA 90048, USA.

A patient with cluster headache often wakes from sleep. The relationship to sleep apnea has been described. This study sought to confirm the relationship cluster may have with sleep apnea. METHODS: Thirty-nine consecutive patients diagnosed with episodic cluster headache according to the International Headache Society (IHS) criteria were sent for polysomnographic studies. All patients were in an active phase when they were in the study. Patients were told of the proposed relationship and were allowed to choose a sleep laboratory close to their home. RESULTS: Thirty-one patients with episodic cluster headache completed an overnight polysomnographic study. Twenty-three were male and eight female. The average age was 51 years (range 33 to 78 years). The average weight was 173 pounds (range 117 to 260 pounds). A total of 80.64% had sleep apnea (25/31). Average respiratory depression index (RDI) was 19.0 (SD 14.6) with 6 patients having no apnea, 10 having mild, 11 having moderate, and 4 having severe apnea (RDI < 5 = none; RDI 5 to 20 mild; RDI 20 to 40 moderate; RDI > 40 severe). Oxygen saturation decreased on average to 88.4% SD 4.5. Sleep efficiency was 76.2% (SD 13.4). CONCLUSIONS: The data closely approximate those of Chervin et al, where 80% had RDI > 5. The relationship sleep apnea has in the perpetuation or precipitation of cluster headache is still to be determined. There are some reports that treatment stops the cluster but there is no prospective study. The high incidence (80.64%) seen in this population suggests the cluster patient should receive a sleep evaluation and perhaps intervention with continuous positive airway pressure (CPAP) or an appropriate dental device.

PMID: 15186306 [PubMed - indexed for MEDLINE]

Title: Re: Greetings
Post by E-Double on Sep 1^st, 2005, 6:47am

Hi Darsy,

I'm sorry that you are having bouts of tremendous headpain.

Go ahead and take the cluster quiz.

I say this because you mentioned tylenol getting rid of them and I did not notice the duration of your attacks. There are headache types that present similar to CH but differ in duration, intensity and that are responsive to NSAID's (non steroidal anti inflamtory drugs) @ high doses, though indomethacin is recommended (the super NSAID)

If the rate increases SUBSTANTIALLY and you are finding them to be a few minutes versus 30/40+ minutes to a couple of hrs. then you might want to research Paroxysmal Hemicrania.

Many of us have gone yrs. un/misdiagnosed and once we learn about what condition we have can offer up strong advice. We are not doctors, however we have a collective millenia of knowledge regarding CH and through research other headache types. Some of us even have multiple headache types in addition to CH.

Regarding sleep apnea, this is also very common amongst the population yet it appears to be (according to the research) central sleep apnea as opposed to obstructive. This is why many have gone on to either use CPAP's unsuccessfully or have had surgeries that have not helped.
We have a malfunctioning hypothalmus which appears to be the root of CH and this can also be the "cause" of central sleep apnea thus having surgeries or treatments for it have been unsuccessful for many.

Whatever it is that you do have certainly sucks and we will try to help.

Regards,

Eric

Title: Re: Greetings
Post by Darsynia on Sep 1^st, 2005, 7:50am

First of all--thanks for the links! Very helpful, particularly the quote about the possible and probably links between apnea and CH's.

After reading a lot on the site, I've come to the frightening conclusion that the tylenol is probably NOT helping, and I just *think* it is, and am having half-hour attacks that I believe are going away from the tylenol taking a half hour to kick in.

Oh dear.

I took the quiz, and got a 'no' for the first 8 and a 'yes' for the rest... joy. After visiting the OUCH site, I noticed a similarly named CH that mentioned symptoms that were more common in females and were triggered by movement and stabbing pain rather than consistent. I think that's more descriptive of what's happening to me. Are they in the same 'family' (I assume so) as regular CH's? The name was C?H and had a Latin? name also. I'd be simply delighted if it turned out I DON'T have what I've been reading about for the past couple of weeks, but I'd also be quite surprised if I don't. Everything seems to fit.

Title: Re: Greetings
Post by E-Double on Sep 1^st, 2005, 7:59am

If you are leaning more towards Paroxysmal Hemicrania, ask your doctor for a trial of Indomethacin.

It is near 100% effective in keeping PH and some other HA types at bay.

If it does not work almost immediately then you probably do not have that and might have CH. It is possible that you do have a classic 30 minute attack which just comes and goes just as quickly.

In addition, some people who first start experiencing CH do have "lesser" symptoms then comes the Big BOOM!

Good luck!