Evening all,

Its great to find a group cursed with the same affliction as myself!
To cut a long story short,
Had headaches for over 10 years which have been worse the last 6 or so to the point they finally diagnosed Clusters.

I worked with a Nuro and we went through the Triptans, Verapamil, Pure 02, steroids, nerve block and everything else he could think of with no benefit.

Last year I finally went to see a Dr at Johns Hopkins Headache Clinic in Baltimore.
I had a Spinal Tap before Christmas which came back clean.
We have tried Indomethacin and I am currently just coming off Topamax as I was getting all the side effects and none of the benefits.  :(

I suffer from constant headaches. They never really leave. However its when the big guns fire thats when the party really gets started but you all know about that.

I have no preventive or abortive therapy at the moment and reaching the end of my rope.

I have printed the article on therapies for CH and am interested to hear what others use to control their headaches.

Hi ExPat,

Sorry you're having such a rough time of it.  First things first... that end you're hanging onto......  don't let go. We're holding the other end.

You said that you tried many different things but I'd like to address one in particular:  the o2.   Many times when we're given o2, its not at the right flow rate or with the right equipment.

You want AT LEAST 15 lpm with a non-rebreather mask and hit it at the very first sign of attack.   From what you wrote, you've had meds for the last 4 years- some work for some people, not for others. A good combo is the verap and o2, but you have to ramp up on the verap for about 2 weeks. I know I gave up on it just cuz it took so long and I didn't have an abortive then (its o2 now!)

Another med a lot of people here use is Lithium. I've never tried it but a lot of people get really good results.

Shadows (those nagging, I'm still lurking and waiting to strike with full force HA's) can be a bitch to deal with, but many have success with strong coffee, energy drinks like red bull, heat or cold applied to the affected side, and for me, they can be minimized with Excedrin Migraine.

There are a lot of weapons to use to fight your CH and as you read and talk to people, you'll learn and try more and find the right combination for you.  That's the rope I mentioned.  :)

Welcome to Clusterville.

Going to Hopkins is like approaching the Throne of God for medicine! I assume you saw a headache specialist there, not a general neurologist. If that's not the case, really need a headache specialist. Too many good neurologits simply lack training/experience in headache.
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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.  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.

Thanks for the replies.

I was taking 02 at 10lpm if i remember so it might be worth revisiting it at a higher flow.

Going to Hopkins was a last ditch attempt to get this under control.

They have a specialist headache clinic START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and I am seeing Dr Rosenberg who is the Director of the Headache Center.

The wait to get in was about 4 months but I was very impressed with him.
The problem with going there is that they are very busy and the time between appointments can be months which doesn't help.

They do have an e-mail system though so you can send them messages and they can reply back.
The last time I went I saw the Nurse Practitioner who works with him because I could get in sooner.

When I explained what was happening with the Topamax she twice tried to put me on other meds that THEY had previously prescribed. :o

Our next step is a DHE infusion to try and break the current cycle but this is pretty much worthless without a preventative.

I've gone inpatient twice for the DHE push treatment (1mg every 8 hours for 3 days), and when I got out, the headaches returned with a vengeance for about a week. Then, just like that, nothing. For 9 months.

It might be worth a try.

SHADOWS!  Ok, so other ppl have them too?  That's awesome to know---I thought maybe my diagnosis is wrong because I wasn't going "totally pain free within 5 minutes"---I've been having this nagging headache in between.  I have been distinguishing just by calling them "cluster ones" and "migraines".

Sorry, I hope that wasn't a social misstep---I just had to sort of interject and say thank you!  I'm new, and newly diagnosed, and I have a lot to learn.  You just taught me something.  Shadows.  Awesome.  

Jess wrote on Feb 9^th, 2009 at 7:32pm:

SHADOWS!  Ok, so other ppl have them too?  That's awesome to know---I thought maybe my diagnosis is wrong because I wasn't going "totally pain free within 5 minutes"

Shadows?  Very common, indeed.  

Ofttimes, we distinguish here between "shadows" (a low-level CH attack that never really goes full-blown) and "afterburn" or "headache hangover" (a dull, bruised-feeling headache that lingers in the wake of a bad attack that can take hours to dissipate).  

See:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

...to view the "kip scale" we normally use to describe the intensity of the attacks we get.

Welcome to CH.com.  I look forward to seeing your future posts.

Best wishes,

George  

thanks for reaching out, George.  :-)  You may see posts from me a lot.  I have a ton of questions.  Guess I should hop over to the question board now... off i go!

- Jess