Hello everyone!!  I was diagnosed with ch in Jan 2010, but my cycle started on Nov 16, 2009.  Since then I have been on so many medications (verapamil, timmerol, topimate, depakot, migranol, etc...). Most of the medications I was on at the same time.  I also spent a week in the hospital with iv drugs.  Since this started I have not had much release.  I am currently on medical leave and will probably lose my job in a few weeks due to not being able to return to work. 
I am at a loss at this point.  I am looking for a new neurologist since mine doesn't seem to be able to help.  Can anyone offer any suggestions on new ways to try to fight this thing?! I have stopped living my life and don't want to be like this the rest of my life. :-?

From the OUCH website, a list of CH-patient recommended doctors in Florida:

Dr. Roberta Rose
Sebastian

Potter Priscilla
Miami

David Torrisi
Pensacola

Steven Wheeler
Miami

Steven Kobetz
Miami

Frank Wierichs
Venice

Michael L. Waters
Jacksonville

John F. Wilker

(Family Practice Associates)
St.Cloud

Dr. Todd Hartley
Maitland

Sam Synder
Ft Lauderdale

James L. Cimera
Ft. Lauderdale

Maybe you can find someone on this list who has dealt with this thing before.

LOCATING HEADACHE SPECIALIST

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Suggest you print these abstracts and give to your doc.

Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

Your frustration, unfortunately, is not uncommon. It would be helpful if you let us know a little more about the preventatives you have taken and in what dosages. Also, you do not mention O2, energy drinks, melatonin, kudzu or pred tapers. Have you tried these abortives and in what manner? Also, consider checking out the clusterbusters link. It seems you still have an arsenal of weapons available but it's difficult to know since we know so little. We are not doctors (mostly) but we do have experience with this stuff. Take Brew's advice and find a knowledgable dr quickly. God bless. lance

The only advice I can add is "an educated CH'er hurts a lot less." As hard as it is to do now, pay very close attention to how each med affects you. Learn what works best for YOU. Continue to read what has worked well for others here on the board and take that info to your neuro. And DEMAND oxygen. I'm a 32 year episodic sufferer, I abort my attacks in 6-8 minutes just huffing 02.

Welcome to the board.

Joe

When I was first unsure about my headaches I wrote a diary, which included what medications I was on as I started with a bit of a mix so it was difficult to establish was meds were doing what! Like someone else has mentioned, what are you using to abort attacks? Oxygen used correctly can be very effective.

I hope you get some answers soon! Sometimes it can take a little time and research but is worth it to make sure the cycle is more controlled - and this website and OUCH is fantastic to talk to others for support.

PFDAN x

I can't add anything except to hang on.  You can get relief,and we'll do all we can to help you get it.  There is a LOT of great info available here, and hundreds of years experience (collectively).  Probably the biggest thing for now is what Emma suggested about a diary.  Especially with going to a new Dr.  Knowing what has been tried and in what combinations, what the results were, both good and bad, and what ideas YOU would like to try.  Many of us have found we have more knowledge of CH than does our Dr and we can to a large degree self-direct our treatment.  As Joe said, "an educated CH'er hurts a lot less."

Jerry

Thank you everyone for all the assistance:

My meds (that I have since discontinued)- verapamil 240mg (can't go further due to low blood pressure), topimate 400mg, timmerol 100mg). The other balances I do not recall.  I have done steroids.  Nothing seemed to work, but it was hard to tell since each week something was increased or added.

I am currently using oxygen for the second time.  It does help at times. 

I guess I am curious if anyone has experienced a doctor who just increases meds or adds meds (w/o stopping others) even when it is apparent that they are not working?!  I am just starting to educate myself and feel that I did not advocate enough for myself with my doctor.

Again I can't thank you enough!!  Everyone seems to be extremely educated- were I want to get.

You doc/meds problems are too common with doc who lack education/experience with complex headache disorders: why we are encouraging finding a specialist!

Here's an example: The combination of verapamil and lithium, often called the "chronic cocktail" by those whom it benefits, will often work positively as a preventative for people that had no success with either alone.

Also, you said that you're using O2 and that it helps sometimes, but you don't say how it's administered, i.e., the type of mask, the flow rate, etc.

Im up to 720 mgs a day for verap,i use the suma shots too, i cant work either,im a chronic head, i know it can be frustrating.Take it one day at a time,thats how i do it ;)


One Love

The V.A.

I was perceived 10lpm for 15 mins, but reading info here it looks like I need to turn it up to at least 15lpm.  I was also thinking about the opti mask- is it a good investment?!  I am using a mask this time, last time I used the nasal cannula- not good!
:o

I own three O₂ptimasks - one for home, one for the car, one for the office. Best oxygen-related investment I ever made.

The O2ptimask is well worth the money!  I would use the old style only in an emergency (being interpreted as above a K7 and no energy drinks available)  I also would ask for a minimum of 25 lpm.  You don't have to use that much if you don't need it, but it is much better to have more than you need than less.  At 25 lpm I can kill a hit within 5-8 mins instead of 20-30 at 15 lpm.

Since you have low blood pressure and can't use Verap you might want to look into Kudzu, an over the counter herbal remedy from China.  Several of us have had good success with it, and I found I didn't have the side effects of Verap or Lithium with it.  There are several threads that talk about it or PM me and I'll pass on my supplier and my experience with it.

My last recommendation, but definitely not least, check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; It has been a godsend to many here.

Jerry

I hope by now you've read the O2 link on the left. You can also search the term oxygen for this site for threads relating to its use. From what you've said, there is much room for improvement in how you approach O2 as an abortive. Nasal canulas are next to worthless, and a nonrebreather mask is vital. O2 therapy as an abort is not as simple as just hooking up to any old oxygen source and breathing normally. The equipment and breathing have to support hyperventilation for the fastest and most effective aborts. This was a huge revelation to me when I started on this site. Check it out, you'll be glad you did. Blessings. lance

Nothing ever worked the past 5 years for me either until I found this site,so much help.For my CH frustrations I have a punching bag, on days when I feel o.k. I lay into that mo-fo.

Besides taking Meds,shots,O2 and whatever else we use we also need ways of venting,don't forget that,it can build like a volcano and make CHs worse for some.

When I can, I write music, paint and use other forms of self expression to get my demons to rest.

I know this doesn't apply to everyone but I hope it helps

One Love

I can't thank any of you enough!!  All of your posts make me feel empowered!!!!  I am off and running now with all of this information!!!!!

Hi Jerry....I've been referring to this website for several years, but just registered today so that I could participate in the message board. I've had CH's for about 29yrs....started when I was 12ish...I know I don't quite fit the profile as I'm a woman and they started when I was 12. Anyhow - there is no question that they are CH's...it was this website that finally verified this after so many years of being misdiagnosed...you know the story...I'm just coming to the end (i hope) of a terrible cycle. I get about 1 - 2 cyles/yr...i've been using 02 for about 6yrs and it aborts most of them...however, it gets really bad and i have to suffer thru them for about 3 weeks....this wouldn't be such a big deal if i weren't in school...i am studying dental hygiene and will be practicing on patients soon....can't run away from them and push the o2 for 20mins.....i need to come up with a plan for the next cycle and i'm curious about kudzu....i've been reading posts, but am not sure how to take it...what form....how much?????...i don't take any other medications...any advice?? thanx :)

Welcome to the board...another one of those women faking CH to get attention! ;)

You'll find there are quite a few women on our board with CH, it's definitely not a mens only club.

Visit   clusterbusters.com     they address a lot of the alternative methods of dealing with CH. Might answer some of your questions.

Joe

Joe: Wimmenz dont get CH!,,,,lmao ;)
the bb

OMG my neurologist is a member of this board! And his name is thebbs!

When I asked my neuro why he thought I didn't have CH, he said because 90% of people with cluster headaches are men.

Quote:

OMG my neurologist is a member of this board! And his name is thebbs!

Oh no my dear, we know better here, kind of a joke really. Your neuro, whom I dont like either, is using old numbers. I have seen newer numbers indicating that more wimmenz are being diagnosed and the ratio is changing. I believe prior misdiagnosis is to blame for the old numbers.
Linda,Jeannie other CHhenz care to comment ;)
the bb