Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> A couple of questions
        
(Message started by: Drew_Va on May 3^rd, 2006, 9:52pm)

Title: A couple of questions
Post by Drew_Va on May 3^rd, 2006, 9:52pm

I am two weeks into a cycle (four today---one bad) and I have a couple of questions:

1. Does anyone know of a good specialist in the Central Virginia area?

2. Does getting startled awake cause headaches to start for anyone else?

Thanks in advance for the help!

Title: Re: A couple of questions
Post by TxBasslady on May 3^rd, 2006, 10:07pm

Hi Drew,

Not sure which doc is the best in your area.

As far as being startled and CH, usually it's the onset of the CH that startles me....thus waking me. If I get up too fast, it definitely affects the pain level for me.

02 has been a godsend for me. It's all I use for CH.

Maybe someone will come along and help you with the doc information.

Good luck...lots of PF vibes,

Jean

Title: Re: A couple of questions
Post by Jonny on May 3^rd, 2006, 10:10pm

Startled?

If a Ch wakes me up I am full blown into the pain.

Good luck, read all you can here, Bro.

Title: Re: A couple of questions
Post by Drew_Va on May 3^rd, 2006, 10:16pm

Hi Jean.

Thanks for the reply and well wishes. Being startled seems to bring on the headaches and makes them worse as well. Last night it happened when my 6-month old daughter woke up crying. Fortunatley this won't happen often as my wife is convinced I don't hear her at night. ;;D

I am going to the Doc tomorrow and intend to try 02. I tried it 6-7 years ago but after reading this site I don't think I used it correctly. I have also been using triptans with little results so I hope maybe the Doctor will have some other ideas. Whih brings me back to the good Specialist question: In 24 years of this I do not believe I have seen a Doctor yet who fully understands CH. I have learned more reading here in the past week than I ever have from my Doctors. Sad but true.

Thanks again

Drew

Title: Re: A couple of questions
Post by TxBasslady on May 3^rd, 2006, 10:54pm

Good luck with your doc.

Hope you do get the 02 and try it again. You need a regulator that's 12-15 lpm, and a non rebreather mask.
You might check out the new clustermasx....designed by a brother clusterhead in the UK.

Sometimes it's difficult to find a doc with CH experience, but there are some out there. My doc has not a clue about CH...however, I printed out tons of stuff from this site and took it with me. He pretty much gave me what I asked for. He had never written a Rx for 02... I provided him the info on 02 from this site and he wrote the Rx perfectly.

Also...I keep a CH diary....I log every hit...time of onset...how long it lasted and what level it was on the Kip scale. I think it's a great tool....helps you and your doc to know what worked/didn't work...and also gives you an insight as to the times of the year the CH is the worse.

Let us know what you find out at the doc.

Jean

Title: Re: A couple of questions
Post by Richr8 on May 3^rd, 2006, 11:19pm

on 05/03/06 at 21:52:22, Drew_Va wrote:

Does getting startled awake cause headaches to start for anyone else?

Welcome and like the others, I am startled awake by the high level of pain I'm in from the HAs.

Title: Re: A couple of questions
Post by sandie99 on May 4^th, 2006, 8:00am

Drew,

I wish you a short cycle. And a great doc. :)

If ch wakes me up in the middle of night, I wake up with full hit. Usually I get hit before going to bed or when I'm not asleep yet.

Best wishes & PFdays,
Sanna

Title: Re: A couple of questions
Post by Bob_Johnson on May 4^th, 2006, 8:47am

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: A couple of questions
Post by chewy on May 4^th, 2006, 9:01am

If I'm startled awake by anything else than a full blown CH then yes, it will trigger one.

Title: Re: A couple of questions
Post by clarence on May 4^th, 2006, 9:41am

I'm with chewy.

Most of the time CH wakes me up unpleasently.

If I take a nap during the day, I usually get hit once I wake up, startled or not.

If I am startled awake by anything other than the CH, nap or otherwise, I get hit.

Come to think of it...I just get hit all the freaking time, so this study is inconclusive.

Casey

Title: Re: A couple of questions
Post by Drew_Va on May 4^th, 2006, 12:34pm

Leaving work shortly for the Doctor's. Thanks for the input. With the comments/info I have read throughout this site I now feel better armed than ever to fight the good fight.

And despite the pain of these HA's it is still a beautiful spring day in Central Virginia!

Best to all. PF Days!