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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Jared From San Fran
        
(Message started by: jareddunne on May 8^th, 2007, 6:52am)

Title: Jared From San Fran
Post by jareddunne on May 8^th, 2007, 6:52am

Hi Everyone-

I just found this site. I have recently (last couple months) suspected that I am a CH sufferer. After some research on the internet, over the past week, I am now certain that the headaches are episodic cluster headaches.

I am a 27 year old male and live in San Francisco, CA. I moved out here about 2 years ago from Chicago, coincidentally just after my first episode of cluster headaches.

I am in the middle what I believe is my 3rd episode of CHs. Previously, I didnt understand the nature of my headaches, so I'm not exactly sure how long my episodes have lasted exactly in the past. I do know that my actual headaches seem to last much much longer than average (14-17 hours from onset to end)

I am just now beginning to understand what my triggers are (the usual suspects: alcohol, nicotine, altered sleep patterns). I still dont know how to tell when I am in the midst of an episode other than when I trigger a headache. I am starting to experiment with abortive techniques. I am also starting to better understand the phases of my headaches, but still have trouble telling if I am in an onset period of a CH or actually having a weaker CH peak. This is problematic for me since some abortive techniques (caffeine) work for me in onset but make things MUCH worse during peak.

Any help or links to resources (or other threads) for people new to CHs would be great. I will continue to browse the forums, as I am already finding it quite helpful! I am primarily interested in self-help techniques and would like to avoid doctors, prescription medicines, surgeries, etc as much as possible. I would be open to O2, especially if I can get the equipment I need over the counter.

Thanks so much for any help! I hope to give back as I become more experienced myself..
Jared-

Title: Re: Jared From San Fran
Post by Cathi04 on May 8^th, 2007, 7:25am

Welcome, Jared, and I sure wish you didn't need this place! The good news is, this is where you learn to 'handle" the beast.
What's next? A Neuro! Yes, you really have to involve a Dr for the best outcome.Get your DX, and you can then get the artillery you need- 02, a preventative and an abortive. I am sorry to say, thes are your best line of defense, Jared. You can take Red Bull, or a comparable energy drink at the onset of a hit. You can try the WaterX3, or look into alternatives, such as Clusterbusters. While you are doing that, I suggest you read, read, read....take a look at the buttons on the left and read their contents. Take the Cluster Quiz, and ask any questions you have. There is a ton of experience in dealing with the beast here. YOU will get help!
Wishing you PF real soon........
Cathi

Title: Re: Jared From San Fran
Post by Redd on May 8^th, 2007, 8:32am

I would suggest you take the cluster quiz on the links to the left. The 14-17 hour attacks would indicate something other than CH. Possibly migraine.

Anyway, take the quiz and let us know the outcome.

Title: Re: Jared From San Fran
Post by Bob_Johnson on May 8^th, 2007, 10:50am

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.
=======================
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Jared From San Fran
Post by jareddunne on May 8^th, 2007, 1:06pm

Yes, the length of my headaches seems different than that which I read about on CH resources, every other quality of my headaches location, type of pain, etc points squarely to CH. I own some books on the Cranial Nerves and I can point to the exact nerve endings on the Trigeminal nerve around the eye that affect me. I should research further to see if there are migraines that have similar location/triggers to CHs. Perhaps this is another good place for a Nuero to aide me.

I have used some of the resources mentioned in order to locate a Nuero near me (at UCSF which is a great hospital/medical research center). I dont have problems with doctors per say, it's just that I dont have health insurance nor do I have steady income at the moment. I dont want to do any surgerical procedures at this point even placing money aside. I will have to look into how much an office visit and whatever testing would cost me.

Title: Re: Jared From San Fran
Post by Guiseppi on May 8^th, 2007, 1:21pm

Sometimes it's just a question of the details. I used to describe my headaches as lasting all day. About 9:30 am I'd get slammed, it would ramp up to an 8-10 in less then 15 minutes, and beat me up for an hour or so. Then for the next 6-8 hours I'd have this dull throbbing pain that felt like I got wallopped with a 2X4 in the forehead. So when someone asked me how long they lasted I'd say all freaking day long!

Start a detailed headache diary. What time they start, how fast they ramp up using the KIP scale. How long it takes to peak, how long they stay at peak and how long it takes them to recede. Try to identify triggers when you are on cycle. For me it's alcohol, especially grain alcohol, sleep deprivation and stress. It's an extremely valuable diagnostic tool. I suck at remembering details on anything so without a diary I was of very little help to me doctor in giving him enough details to help me.

I hope you don't have CH, it's kinda inconvenient to say the least! If it turns out you do then please spend some time with us. Most of us are okay people! ;;D

Guiseppi

Title: Re: Jared From San Fran
Post by jareddunne on May 8^th, 2007, 1:22pm

Redd:
Thanks for the advice on the quiz. Unfornuately, I dont know enough about my headaches to be able to take the quiz with any meaningful outcome. For example, I have tried seeking out darkness and laying down in the past with no success. So do I normally try that? Yes. Does it work? I dont think so.

Also since these headaches are a new thing for me, I dont have enuff data yet to know if the time of day/year thing is applicable for me. I do know that while working a 9-5 job, when susceptible to headaches, I was getting them the same time of week (Sat morning 7am) triggered by any alcohol on Friday night. But I was recently doing a startup and I got my sleep patterns super messed up, now even though i am more or less back on a normal sleep cycle, the cluster headaches are no longer as predictable and the intensity and frequency have increased.

But point taken, I will be doing more research into migraines today as well. Perhaps there is a CH-esque migraine with regards to pain location and triggers.

Title: Re: Jared From San Fran
Post by jareddunne on May 8^th, 2007, 1:33pm

on 05/08/07 at 13:21:42, Guiseppi wrote:

Start a detailed headache diary. What time they start, how fast they ramp up using the KIP scale. How long it takes to peak, how long they stay at peak and how long it takes them to recede. Try to identify triggers when you are on cycle. For me it's alcohol, especially grain alcohol, sleep deprivation and stress. It's an extremely valuable diagnostic tool. I suck at remembering details on anything so without a diary I was of very little help to me doctor in giving him enough details to help me.
Guiseppi

This is great advice to anyone with headaches! Fornuately, I am a step a head of you.. I have been taking a diary on my headaches for about a week now.

So, I think I am in a similar boat to you as far as how I describe the length of the headache. Take yesterday. i was awoken at 7am with a 2-3/10 headache, I tied to sleep more with minor sucess. I got out of bed at 10am with a level 3/10 pain clearly ont he right side eye. Then at 2pm it suddenly shot up to a level 7.5/10. This lasted until around 5-6pm when started having success with applying heatpacks to forehead/eye. The headache then returned to a 3/10 until 11pm I took an excederin (w/ caffeine) and the remaining pain immediately vanished. So I call that 16 hours but a more experienced CH sufferer might call that 4 hours?

Title: Re: Jared From San Fran
Post by Rosybabe on May 8^th, 2007, 3:10pm

HI Jared!

I am reading your post and it sounds to me more like a nasty migraine..

you do need to see a Doc, He needs to run some test to be sure the pain you are having is not caused by something else..

keep up with the headache log, it will help the Doc tremendously at the time of diagnosis.

Good Luck Jared and I really hope what you have is not CH.

Title: Re: Jared From San Fran
Post by jareddunne on May 8^th, 2007, 10:26pm

on 05/08/07 at 15:10:44, Rosybabe wrote:

I am reading your post and it sounds to me more like a nasty migraine..

Thanks to everyone for your help and pointing me to look further into migraines.

I was unaware that there are two main class of migraines. Since I haven't experienced any auras, I had dismissed them. It seems there is some over lap between migraines and CHs in terms of class of triggers and location of pain, but quite different in other respects. In some areas (mainly length) this really helps clear up some of the conflicts I was seeing in CH info and in my personal experience.

Given this new information and reevaluating my headache yesterday using my diary entries, I can now see that my peak at 2pm was likely caused by a voyage out into the beautiful, bright, sunny SF day and some moderate uphill walking. This really speaks to value of these diary logs. I will continue to use it in the future and bring it with me to consult with a Nuero to explore non-drug treatments if that's even possible for me.

Thank you all so much for your help. It is wonderful to know that CH sufferers have such a valuable resource and community in this site. I wish you all the best and many PFDANs.

Jared-

Title: Re: Jared From San Fran
Post by Rosybabe on May 9^th, 2007, 6:03pm

Thanks Jared!!

Good Luck and hope you find the right medication for you.

Best wishes for pain free days!!