Ive been dealing with ch for 3 years. My doctor diagnosed me just last year during my last cluster period. Mine so far only last a month in the summer and generally happen around 3pm-10pm. I know it is a little early to be worring about them, but I am now working in construction. I know that with my comming cluster period that I will most likely be fired. I want to know what other people do to deal with this? Are some employers sympathetic to this condition? Also, I am interested in O2 therapy becuase the pills my doc perscribed I have already taken for migrane with no results, in fact I think I my have been allergic. Can I only recieve O2 at my doctors office? Or is it possible to deal with them as they happen? My doctor told me I could only recieve it through him or the hospital... seeing as how my doctor is 40 minutes away I dont know how that could possibly help me. Sorry I have so many questions, but I was wondering if any of you also have panic attacts? I have them occasionally, but the last time I did was the first time I had one with the cluster headache, and Im pretty sure I went crazy. I am scared there is absolutly nothing I can do.

Welcome!

FOr O2 info check out the "oxygen info" button on the left side of your screen....or....just click the following link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As for panic attacks.....yes...a few of us have had them.

There is plenty you can do. Try o2....try different abortive medications. Pills rarely work fast enough for CH. Injections and nasal sprays work much faster for most of us.

Bill

O.K., so your doc isn't qualified to treat cluster...
Start here:

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.  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.

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Working in the field, under construction conditions, makes it nearly impossible to use oxygen. When you did a hit there, a pill abortive is the best shot because it's not obvious you are using it and a quick sip of water and the job is done.

You will also want to discuss options for preventive meds which reduce the intensity/frequency of attacks with your doc.

Start to read the material in the OUCH site (left), following the multiple internal links. Knowing what you are dealing with, see your options, is critical.....


Headache doc can help since there are several choices in pill form.

Don't be scared that there's nothing you can do because there's all kinds of effective stuff you can do!

The fact that you're jumping on it early is what will really make the difference - it'll just be a matter now of figuring out  what will be your best plan of attack (and your back up plan in case). Then for the meds part of your plan, you find a doctor who will prescribe the right ones.

The panic attack personality will probably work in your favor here, because you're motivated to deal with this.

So there's just one problem with your current doctor. He's a total a-hole. Everyone here administers their own O2 at home, and you'll be able to get a prescription for doing just that. Ultra worst case scenario is you just mosey over to a welding supply place and get the exact same O2 from them cheap, no prescription required.

Personally I would look into starting to dose with RC (Rivea Corymbosa) seeds right now. That's very alternative , and looked at ascance by some I suppose because for one thing it's all natural. No real side effects that I know of at therapeutic doses, used by indigenous peoples by centuries, and of course, illegal to ingest  :o. (could be hallucinogenic in very large doses), Not illegal to mail order and possess though.

Moving right along, between preventatives such as Verapamil (if RC isn't your cup of tea, or isn't working for you), and the practically guaranteed back up abortive of imitrex injections (if O2 fails or isn't available), its actually possible to get through your whole episode without a single  full on, full length CH hit breaking through. No guarantees there either, but I've done it.

If your employer is someone you have email contact with I would propose sending an email with links to some short, succinct, very legit info, maybe video, that clearly emphasizes 2 things: Suicide headaches. Worst pain known to mankind. I think that's about as clear as you can make it, but be prepared to hear "oh yeah I have migraines too", or "it's probably sinus headache" etc.  :(

You'll find the info you need on this site, so just get your researching cap on and you'll give this CH beast some blowback that will send HIM reeling for a change.  :)

And don't just completely entrust your care to any doctor. You have to grab this bull by the horns yourself for best results

Welcome stacee!

   The best have already replied. the only thing I can add, is to Read all you can here, and you will learn how and what to take or do.

  Sorry you have to deal with this and the panic attack too.                               lorac

Hi Stacee,

Since you obviously have a Dr that knows squat all about CH it is up to you to educate yourself and learn to deal with it.  I've had them for over 30 yrs, about 7 yrs chronic, and have worked construction during that period.  The key is to have a plan of attack worked out ahead of time and have your preventative in place and your abortive ready.  High flow O2 is my abortive of choice.  I use 25 lpm, and can knock out a hit in 5-8 mins.  For times that oxygen is not available for whateve reason I carry an energy drink or two and slam it down as fast as I can drink it at the FIRST sign of an attack.  It will usually work within 10 mins for me.  I prefer 5Hr Energy (I buy the 6 pack at WalMart in the pharmacy food bar section).  They are small, so you can carry them around with you and they don't tear up my stomach as badly as do the carbonated ones.

For an abortive I have been using Kudzu very successfully for the last couple of years.  It is relatively inexpensive, and for me works better than Verapamil and without the side effects.

As you read on here you will find a myriad of different ways of handling this beast.  No two methods work the same for any of us, so you will need to determine what is best for you.  Don't wait for your Dr to do it for you.  If you do you are setting yourself up for a lot of unneeded pain and suffering.

Don't be afraid to ask questions.  No honest question is a dumb one, although you may have to wade through a few dumb answers. :D

Jerry