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New member, 10 years of CH (Read 1369 times)

Ngl

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New member, 10 years of CH
May 30^th, 2009 at 1:17pm

Hi everyone, new member here Wink

I've been suffering from episodic CH (this is a self-diagnosis since all my symptoms match this discription) for ten years and have seen many doctors up to now, unfortunatelly without getting any substantial help. Recently I discovered this forum, finally a place where I can get some help and discuss with people that can undestand the situation.

This year the headaches started about a week ago and I am really tring to find something that helps. I usually have 2-3 headaches per day, lasting from half an hour and up to 3 hours, and the episode lasts from one and a half to two months each year. I have an appointment with a GP next week and I am going to dicuss my condition with him, hoping that he will prescribe O2 (this seems to be one of the most sucessful and side-effect-free treatmet, so I want to try this first).

Browsing through the forum I read that some people find that drinking redbull can be helpful, so I tried it the past 3 days and the results are quite good

. However it seems that it only delays the headache but still this is really something especially if you are outside or working etc. Are there any restrictions on how many I can drink per day?

Also, while searching online, I came across a nasal spary called Sinol that contains Capsaicin (substanse found in chilly peppers) and claims to help eliminate a CH by dialating the bloodvessels around the area. I was wandering if anyone has tried this and with what results.. I couldnt find it at a drug store today so I am going to order it online. Here is a link:
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« Last Edit: May 30^th, 2009 at 1:18pm by Ngl »

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Guiseppi

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Re: New member, 10 years of CH
Reply #1 - May 30^th, 2009 at 1:32pm

Wouldn't waste my money on the sinus spray. It's having minimal positive effects from what people have posted on the board. It mostly burns your nose enough to take your mind off the headache. You can accomplish the same thing by hitting your toe with a ball peen hammer...save yourself a couple of bucks! Wink

When you go to the doc, consider a 2 pronged approach with him:

1: A good preventative routine. A medication you take daily, while on cycle, to reduce the number and intensity of your hits. I use lithium, other popular prevents on the board are verapamil, at doses higher then most docs are used to prescribing it, and topomax.

2: A good abortive, a headache starts, now what? You are definitely on the right track with the oxygen. Do read the link on the left, "oxygen info." It must be used correctly or it's not very effective. I can halt an attack, be pain free, in 6-8 minutes by huffing oxygen.

I'm no doctor but it sure sounds like you have CH. Take the cluster quiz on the left, record your answers and bring that info to your doctor appointment. If you're not already doing so, start keeping a detailed headache diary, when they start how fast they build how long they last describe the type of pain, a detailed journal is a valuable diagnostic tool for your doc.

Glad you found us, hope we can get you on the right track, headaches suck! Wink

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Ngl CH.com Newbie Offline I Love CH.com! Posts: 7 Gender:	Re: New member, 10 years of CH Reply #2 - May 30^th, 2009 at 1:42pm Thanx for the reply Joe I did the quiz and almost everything matches. The symptoms definately dont match migrane or tension headache so I am quite sure that I have CH. Btw that ball peen hammer treatment you mentioned seems really promising May I add a knock-out hit at the back of the head? :p
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New member, 10 years of CH Reply #3 - May 30^th, 2009 at 2:42pm May I add a knock-out hit at the back of the head? :p I like the idea!!! Yeah, like I said, I'm no doctor but I gotta agree with you, symptoms sound dead on. If the oxygen kills it for you, that'll about guarantee your diagnosis! Wishing you luck with the doctors appointment. Let us know how it goes. Joe
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Kevin_M

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Re: New member, 10 years of CH
Reply #4 - May 30^th, 2009 at 2:53pm

Ngl wrote on May 30^th, 2009 at 1:17pm:

I have an appointment with a GP next week and I am going to dicuss my condition with him, hoping that he will prescribe O2 (this seems to be one of the most sucessful and side-effect-free treatmet, so I want to try this first).

A GP's knowledge of clusters can vary. Guiseppi's given the good one-two approach. The doc may be in tune with what is needed or may try to treat them in a less effective direction if clusters are off his beaten path. Oxygen and a preventive med would be great but a surprisingly good turn of fortune for you. A referral to a neuro for headaches could follow by the doc's recommendation or possibly needed by request, but keep a good headache log of time, duration, and pain scale until you are diagnosed.

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doncey CH.com Newbie Offline Keep headbanging! Posts: 7 victorville cali Gender:	Re: New member, 10 years of CH Reply #5 - May 30^th, 2009 at 2:57pm Funny you guys say that.... Rolled of the bed last night while squarming about. hit the back of my head on a near by book shelf. Stars for a moment, then I realised the pain was gone. Only worked for about 10 seconds. But hey was a nice 10 seconds, I almost tried it again.
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Ngl CH.com Newbie Offline I Love CH.com! Posts: 7 Gender:	Re: New member, 10 years of CH Reply #6 - May 30^th, 2009 at 2:57pm Thanx for the tip guys, I am gonna start keeping a log (I havent so far) to help the diagnosis.
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JustNotRight

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Re: New member, 10 years of CH
Reply #7 - May 31^st, 2009 at 9:54am

Hi NGL and Welcome.

Yep sounds like C.H. to me, you have my sympathy and support.
9 years diagnosed suffer here, suffered for almost 2 years before diagnosis.

I've never heard of that nasal spray, but as one limited by the almighty God of the Ins. Co. I am stuck with Imitrex nasal as a back up to the shots since my Ins. God will only allow me so many shots per mo. any way I digress...The nasals never work as well due to swelling of the nasal cavity during a C.H. Attache. How ever if you can use the nasal (whatever type) at the 1st twinges of a C.H. attache it may be useful, emphasis on the MAY BE...

PFDAN to all.

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