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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Recently diagnosed
        
(Message started by: johannese on Nov 15^th, 2005, 8:07pm)

Title: Recently diagnosed
Post by johannese on Nov 15^th, 2005, 8:07pm

I was recently diagnosed with CH after having my second ever cycle starting a few weeks ago. I've spent pretty much all of my free time since receiving the diganosis reading up, particularly here.

One concern I have over the diagnosis is that while my symptoms match the common symptoms very closely, they aren't perfect. In particular, my eye does not get bloodshot, nor have I had problems with my eyelids. Also, the pain has only been as bad as a kip 7. Most every other symptom does match, including the location of the pain, the tearing of the eye (although only when the HA is particularly bad) and the stuffiness/running of the nose.

It seems that CH is surprisingly variable from sufferer to sufferer, so is it possible that I really do have CH, but a relatively moderate case?

The GP gave me a small prescription of Imitrex tablets until I can see the Neurologist. While the 100mg tablet worked well, taking about 20 minutes, it left my neck surprisingly stiff. Is that common too?

Thanks for the help, the doctor while familiar with CH, doesn't seem to have nearly the knowledge the forums here have.

Title: Re: Recently diagnosed
Post by Kris_in_SJ on Nov 15^th, 2005, 8:27pm

Hi, and Welcome,

You're right - each of us is a different. If your doc thinks you have CHA's and has referred you to a neurologist, I can only say "Way to Go!"

It usually doesn't happen that quickly, though the education process is improving.

If you are a true clusterhead, Imitrex pills are unlikely to be of much use for quick relief. A cluster simply ramps up too quickly. Nasal spray or autoinjectibles act much more quickly and usually give relief within 10 minutes.

Here's a link to the latest info. It saved my life last cycle. Print it out and take it to your doc - especially if you have to wait awhile to see the neuro.

http://www.brightok.net/~mnjday/chtherapy.pdf

Keep us informed. Many hugs,

Kris

Title: Re: Recently diagnosed
Post by bnfreeman on Nov 16^th, 2005, 12:00am

When I first got clusters I used the trex pills. I was being treated for migraines. It wasn't too long before they didn't work very well at all. It's a great thing you are being diagnosed so soon. I have never heard of a moderate case of cluster headaches. But everyone is different and you may not have every symptom right now. That does not mean things won't change. In many cases the clusters change. They are "smart " headaches and like to shake you up a bit. They keep you on your toes! Keep us informed and welcome to the board!

Title: Re: Recently diagnosed
Post by marlinsfan on Nov 16^th, 2005, 8:18am

My eye does not get bloodshot either, and I have CH. I carry 50 mg pills of trex in my keychain, to use at work as people freak out when I shoot myself with it. 100 mg feels like a lot, especially if you're only up to 7 on kip's scale.

Having CH is a tough thing, but consider yourself lucky you were diagnosed so quickly.

Read the doc that Kris sent, it has all the latest info on meds. Also read and print the oxygen link on the left. O2 works very well for many of us.

If your headaches come at night like most of us, try Melatonin. I take 9 mg per night, 30 minutes before I fall asleep, and it works great to reduce the number and intensity of the nighttime attacks. You can buy that stuff at your walgreens or supermarkets, inthe vitamin section.

PF wishes.
Jose

Title: Re: Recently diagnosed
Post by MJ on Nov 16^th, 2005, 10:28am

Hi johannese

The stiff and sore neck is a symptom that allways accompanies my CH without any medications.

My personal opinion is that the kip scale is, though extremely beneficial to all of us as a needed base point for measuring pain, somewhat flawed in its descriptive pshycological aspects.

So a kip 7 for you may be the same as a 10 or 3 for others, dependent on your tolerance to pain. I for one would never even consider the ER or suicidal thoughts. Many others do.

CH is one of the few diseases that appears to be allmost totally customer driven in its treatment and the research being performed. Much of the research and surveys the docs site has come from sufferers posting here.

Title: Re: Recently diagnosed
Post by johannese on Nov 17^th, 2005, 6:28pm

Thanks for the replies.

I was a bit apprehensive when prescribed the 100mg tablets over the 50mg tablets, but the doctor's reasoning was that since I was young (in my late 20's) and healthy (atleast heart wise), we should hit the HAs strongly do abort them quicker and for sure. I was only given a small prescription and I intend to followup with the Neurologist on if this is the best treatment and/or I should use other treatments (like O2).

My biggest concern about the CH diagnosis is that while almost all of the symptoms do match, the severity is the only thing that does not. I have certainly felt more severe pain in the past, although rarely. I have had other unrelated health problems and I've had to deal with misdisagnosis in the past, so I'm trying to do my own research now because of the past problems.

I guess the key point of my situation is that if it is CH, then it's a pretty early diagnosis and it would very premature to say I will or will not have the more severe symptoms in the future. I guess I can only wait and see (and hope it won't get any worse).

Thanks again everyone. CH.com has been a godsend to learn more about CH.

Title: Re: Recently diagnosed
Post by thebbz on Nov 17^th, 2005, 10:02pm

Please try to find the abortive with the least cost to you in side effects. Your relatively young, the trex is not an issue now. It will be different when you have had them 25 years. The O2 preferably. Try to stay away from the prednisone. And let us know what the neuro says. Keep reading Good luck.
jb

Title: Re: Recently diagnosed
Post by BMoneeTheMoneeMan on Nov 18^th, 2005, 1:51am

Welcome Johan,
It sounds like you have already gotten good advice. I would stress the use of Oxygen. Read about it on the left here <---------. This works for many, and is non "drug" relief.
I also would recommed you try to take the smallest possible dose of Imitrex to get relief. You will have to figure it out, maybe 1/4 dose, maybe 1/2, and so on. Even though you are young and have a healthy heart, its still probably a good idea to use as little of triptans as you need to get relief. Triptans also give pretty bad rebound headaches, which can be a real bitch too. I take Imitrex shots, and i only take 1/4 to 1/3 of a dose and get relief. I am pretty sensitive to drugs, though.
You already know, but this is the most extensive database of clusterheadache knowledge......and knowledege is a big part of dealing with the beast.
PF wishes to you.
Try Oxygen.
BMonee

Title: Re: Recently diagnosed
Post by Beastfodder on Nov 18^th, 2005, 7:07pm

All sounds very familiar - mine weren't too bad at the start.

Great to have a diagnosis so quickly. Recommend the O2 - polypharmacy with nasty pharmaceuticals isn't good and can you feel like shit. For many clusterbusters, myself included, solves that problem.

All the very best