Hi everyone,

I am a 39 year old female. I live in Wa state. I was diagnosed with CH 11 years ago after six weeks of pure hell. I went to many doctors, dentist, ENT etc and finally ended up in the ER. CT of the brain was normal.

The ER doc said I may have CH and to go to a regular doc and ask him about it. So I did. This doc had just returned from a headache seminar and said I was textbook CH. He gave me some Imitrex pills...thank you Jesus for those. He really didn't tell me much else about the condition. Just a few days later my cycle ended. I thought it was because I switched from menthol cigs to Marlboros. HA! Imagine my suprise when the bastards came back two years later.


So my cycle usually starts in either oct/nov/dec and lasts from 3 to 6 weeks. They come about every two years. They started again on Dec 19 2011. This year I decided to do some reasearch about them and found this site. THANK YOU for being here.

So I realize I am lucky in some ways. I am not chronic and I do not get woken up with a headache in the middle of the night. If I take no meds, I will get 6 to 7 headaches a day. So what I do is...take 50mg Imitrex pill right when I get up. Then I take another one in the middle of the day if I feel the head ache starting. Then I take another one at around 10:00 pm when the night head ache starts.  This sorta works... but at least once a day the head ache will come on too fast and I spend 20 to 30 min with the nose pain, swollen leaky eye, sore teeth, and ice pick to the temple and brain. (right side only) I also spend most of my day with mild/moderate shadows and right side nasal pain. Today I feel like someone punched me in the eye and nose. I am soooo tender.

This year my insurance is paying for the imitrex with no questions asked.  In previous years I would beg and borrow money for them since my insurance said I was taking too many.

I now realize this is not the best way to manage these headaches. But it was really the only way I knew how to get through life ya know?

I now have a new doctor. He refuses to prescribe Imitrex for me. I have 10.5 100mg Imitrex left from a previous script.  He says I am taking too much and that I need to see a HA specialist. I agree. So I am going to make an appointment tomorrow. I just wish he would have given them to me in case it takes longer than 5 days to get in to the specialist. If i need to, I will go to a walk in clininc and get some.

I am trying to keep up a positive attitude but its hard. NOTHING compares to this type of pain. There are no words to describe it. And no way to explain the anxiety/worry I feel about hoping to prevent the next one.

The only sure triggers I have managed to figure out are alcohol, opiates, and diet coke for some reason. Not caffeine, just diet coke. When Im in pain and waiting for the Imitrex to kick in I sit in my rocking chair, tilt my head back, rock in the chair, press my right temple and focus on breathing. I supress the feeling of painc that makes me want to jump out of my chair and bash my face in to the wall. Sadly, I have had lots of practice and just sit and rock.

I have not tried the red bull because I hate red bull. But screw it...Im gonna try it tomorrow. I did start the vitamin d/fish oil almost two weeks ago. The second day I was pain free. Then everything came back. Im not giving up on it though.

I have been an RN for almost 7 years so you would think I would be ahead of the game...NOT. I have never seen a patient that has CH and most docs have no clue.(although I work very part time on a cancer floor of a hospital.)

Sorry I just wrote a book about this but it feels good to let it out...to those who will understand.

Wish me luck with getting in to the headache specialist. I am praying he gives me some prednisone at least. It may be too late for verap since my cycle should be ending soon. I would also love to try oxygen.

Thank you again for "listening" and being here. I wish you all pain free and happy days.

Mucho relief! that you are seeing a specialist. As you suspect, your treatment plan is incomplete but give the new doc a change to show his skills before starting to play with new responses.

See PDF below, for the kinds of treatments you may expect.

With your medical background, expect you might find this read of value:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.

Good luck Kiri!
I am hoping your cycle is coming to an end too. And hopefully the HA Specialist will be able to come up with some better treatments for you Just wanted to stop by and offer my support!

PFDAN!
-Matt

Joe,

Yeah, Im not gonna stop the vitamins. I do feel like my mood is better since I started them.

I was at work the other night and I started feeling the nasal pain, my sign that an attack is coming. I asked the charge nurse if she would mind if I used some oxygen to see if it would work. I had told her about CH and she actually knows about it. She has been there 35 years and remembers a few patients admitted for CH. At the time there was nothing much they could do for them.

Anyway, she would not let me use the oxygen since it is a "prescription" and we could both get in trouble. I understand and didn't push it.

Well Im just waitin for my appointment, living on Imitrex for now!

Hi and welcome,

  I'm very surprised that Imitrex pills worked for you, even if only slightly.  They are meant for Migraines and take so long to get into your system that the CH is over long before the pills can start to work.  Plus..like someone already said, they aren't used as a preventative, but as an abortive.  You will be much better off asking for Imitrex nasel sprays or injections.

To the left of here are links.  Please read the 02 link in yellow.  It will tell just about everything you'll need to know and tell your Dr.  Oxygen with a high-flow regulator and a non-rebreather mask is a savior for so many of us.  If I can get on it at the first twinge..I can abort in under 10 mins.  02 is safe, cheap compared to the cost of some of the meds we take, has no side-effects and it works like a charm.  Any Dr. with an MD after their name can prescribe it.

Quote:
    I'm not making fun of you but I have to say that made me really laugh.   

You're very lucky to actually get in to see a specialst in such a short time.  Most of us have had to wait months to be seen.  Please DO let us know how your appt. goes.

Linda

Kiri,

Please check your PM's up above on the left.


Linda

Well I have just taken my 3rd dose of Prednisone(60mg) ...It is working. I have had no CH since the first dose but I have had a low grade all over headache until this morning. Im also eating like a champ and am not sleeping that good.
Oh well, I will take any pred side effect over a CH right now. We shall see if the CH comes back when the pred taper gets lower/is over. I think I will still go see that HA specialist either way just to get established and see what he will say. I will let ya all know what happens!