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Newbie ECH saying hi/thanks


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Wanted to say hi to the group and thanks to all for sharing such amazing information I never knew was out there. I'm 31 and have had episodic cluster headaches for about 10 years, only the last 2 of which were diagnosed. For years I thought I had severe migraines/sinus headaches that came and went in the exact same place in my head behind right eye, and never heard the term cluster headaches until I stumbled upon some online survey and started reading and then the lightbulb moment went on I finally got some clarity to what I had. Therefore, I really have only been logging my attacks/cycles for a short period of time, but my last cycle was 41 days and was CH free for about 14 months and now today I am in day 41 of this current cycle. Definite trigger for me is alcohol and have stayed away during this cycle which seems to limit the severity of attacks. An interesting note is that both of my last cycles began when I was away on business, so could the flying / pressure change be a cycle initiator?

My neuro put me on sumatriptan and then topiramax, but I have since quit taking the topa as I did not enjoy side effects. The sumatriptan seems to abort OK if I recognize early, and I only have the pills which I realize are not as effective as the injections as I continue reading on this board. I just ordered all my D3 regiment supplies and plan to ask at my appointment next week for the O2 setup as described in your files. Thank you thank you for all the helpful information, I am much more informed and prepared, and I'm also more inclined to try the non-pharma strategies, especially as I read that sumatriptan may extend cycles/frequencies. In fact I think I may have more shadows this cycle than last when I didn't take sumatriptan. Pending the outcome of the D3 effectiveness for me, my next step is trying to bust. If/when I find the resources to attempt MM I will be sure and share my debrief on that board.

I have read and printed many of the threads and files on here in the last few weeks, so my main goal today was to say thank you for all the contributors for this encyclopedia for CH.

- Kevin from Delaware




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Rsrsrsrs, hi kevlar, welcome to the club :)

Have a look to the trigger list( but I guess you've already done so) as far as I remember, yes flights changes in air pressure affects some of or fellows (scuba diving too...)

O2 is even more than as terrible strong MUST. If I could I would force every CH-head by the law doing so ;) and of course putting in jail every MD/ND not knowing about it, unfortunately I'm not Mr. Trump :(

I personally think you do very well going into D3 regime prior do bust. You are in a comfortable situation as you seem doing well at the moment.

Don't abandon Sumatriptan completely as it is the main abortive and proven by many. Should be always near you for emergency.

10/10 to you!

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Thanks for note URS! Yes, I never leave anywhere without the sumatriptan during my cycle, but I am excited to try the RIGHT oxygen flow, as the only time I tried at a doc's office was through the nasal tubes and not a mask, and it prob wasn't 15+ LPM. You're right I'm not in as bad a place right now, I have only had shadows the past couple days and if my last cycle is any indication of pattern, them I'm hopefully winding down, but who knows, trying not to jinx it. 

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Hi and welcome kevlar!

It seems that you have done a lot of reading on the board and learned a lot. :) Isn't it amazing that this site is miles ahead of most doctors? Oh course it is a rather rare disorder and most physicians would go broke if they only treated Chers!

Kudu's for getting started on the D3 Regimen. For some it actually stops the hits and for many it will lower the intensity and ramp up time considerably. Either way, you win.

A proper O2 set up will amaze you! You really need at least 15lpm with a non-rebreather mask. With the proper breathing technique, you can kill a hit in 10 minutes or less. Have you tried an energy shot or caffeine at the first sign of an attack? They can abort one for you. Drink it down fast. at the first sign of a hit.

Yes, falling barometric pressure is a common trigger. Airplanes do not maintain the same pressure that you experience down here. And falling pressure due to weather fronts can be rough too.

Triptans are famous for extending cycles. The pills take too long to really help much. Nasal spray or injection are preferred. As for Topa many of us call it Dopamax. :) Verapamil is often the first pharma prescribed.

Good luck with your appt. and I really hope that you get the O2 you so desperately need.


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