I have had CH my entire life, seen a neuro since 2002 and have had CAT MRI spinal taps all the fun tests.  Imitrex with a cocktail of motrin, benadryl and promethazine works sometimes and others midrin worked untill it was discontinued from production (not enough CH??). My state has medical marijuana and that helps keep me less stressed and the edge off but I have not found anything to get me lower then a 3 or 4 on the scale from one to ten. 

Making matters worse I can't be seen by my new neuro (thank you unemployment) for 12 months just for the intro meeting.  So my guess is my next med adjustment is in two years.

Heat, pressure, smell, light, noise, booze, cig smoke are all triggers.  So FML and the damn doctors that don't give two shits about CH sufferers because it's not life threatening.  I wish I had cancer so people would understand my disorder and not think I'm wierd for having a two year long headache that makes me depressed and not wanting to go out in the heat of summer to a loud bar.

Just my first rant

Rants suck.  Get acquainted with the board especially this part.
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       Potter

Take Potter's advice. Read, then read some more. You will need to transition to taking charge of your own treatment instead of relying on doctors.

There are some good doctors out there, but they're rare. On the other hand, you always have yourself to count on. So read and learn here. And ask questions. There aren't any stupid questions. But don't be surprised if you're referred to a different area of this website (or others) to find the answer for yourself.

We understand your pain, but we won't allow you to place blame on others when it's ultimately you who are responsible for relegating this condition to an annoyance.

Maybe not what you wanted to hear, but welcome to the place that offers the best hope yet. Sorry you had to find us, but we're glad you did. Today is the first day of the rest of your life.

If you have the option, you will have much better care from a headache specialist vs. a general neuro. The few hours of education in complex headache disorders which neuros receive is remarkable!
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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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The PDF file, below, is the latest evaluation of meds used for Cluster. Any doc you see should be working from this group.
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Welcome aboard SP.....you are home!

Can't add much to what Potter, Brew, and Bob said...it's gold. I totally understand your frustration...we've all been there...ch is a most misunderstood condition...among friends, family, and the medical profession. Despite that...it is the rare among the rare that would wish even one ch on someone else.

Likewise, I would ask...please...even out of frustration/despair/anger/joking...whatever... wishing cancer on yourself.... because that's "somehow" better...well, you know not of what you speak.

There are folks here dealing with both...neither is a topic for wishing...on ANYONE...

Best,

Jon

Welcome to the board SP. I'll echo first what Potter and Brew said, it's time for YOU to take responsibility for your treatment. Then what Bob said, get thee to a headache specialist. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

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Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Thank you all for the input.  Seems potter can be as abrassive as I can. 

As for my current regiment of meds, a profalactic including a beta blocker, topamax until I tingle and something for neuropathic pain/depression and something for the acid-reflux that acid-cough the pills bring.

When my headaches are a 4+ and not weather related and/or related to sound/smell/light I take imetrex with my cocktail and weather related I used to take midrin. 

The O2 I'll need to investigate definitely because those imatrex shots hurt!

The 02 will wow you! Has almost eliminated my trex useage. It's THAT good. ;)

Joe

SuicidalPain wrote on Aug 29^th, 2011 at 9:51pm:

Thank you all for the input.  Seems potter can be as abrassive as I can.  As for my current regiment of meds, a profalactic including a beta blocker, topamax until I tingle and something for neuropathic pain/depression and something for the acid-reflux that acid-cough the pills bring. When my headaches are a 4+ and not weather related and/or related to sound/smell/light I take imetrex with my cocktail and weather related I used to take midrin.  The O2 I'll need to investigate definitely because those imatrex shots hurt!

You found my post abrasive?  I call it concise.

              Potter

Whether or not the mj is medical it can most likely contribute to a worsening of or a tirgger point for CHs. Take a look at clusterbusters. And I have to agree with all of the above. It's time to take charge of your headaches. REsearch, take notes, ask questions...rant when you have to...and realize we are all dealing with an intractable, uncommon and largely misunderstood disease. That doesn't help so much when the pain is upon us, then we feel totally alone and cosmically picked on. I get that. I also get this place is a wealth of information that you must sift through to find what works and doesn't work for you. Get proactive and really, really investigate high flow (25+lpm) O2. Blessings. lance

Most people miss the plus sign next to 25 lpm. Really tough cases come back and say "I tried high flow O2 and it didn't work." 

I found out what joy is when I went to 45-60 lpm. I also learned the agony of suffering needlessly because I didn't know for all of those years - it was so simple........

No doubt, this is why Pete is pushing the study using demand flow which will provide 60 lpm. No discussions of those confusing and scary sounding flow rate numbers, just "breath really, really deep - exhale hard, repeat process"

I want to be abrasive too. What's the first step?

Marc

Marc wrote on Aug 31^st, 2011 at 6:07pm:

I want to be abrasive too. What's the first step? Marc

You don't got it inya brother 8-)

jon019 wrote on Aug 31^st, 2011 at 7:46pm:

Marc wrote on Aug 31st, 2011 at 6:07pm: I want to be abrasive too. What's the first step? Marc You don't got it inya brother 8-)

You just haven't seen me really pissed off yet  ;D