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(Message started by: rhonda on Jul 5^th, 2007, 8:17am)

Title: Help
Post by rhonda on Jul 5^th, 2007, 8:17am

I need help figuring out how to do this. Im not sure if i'm
posting on the message board or not right now. I looked for a spot to "start a new thread" don't know where i do that.
Anyways...Very grateful to have found this website, its comforting to know i'm not alone. Looking over the postings
there are alot of kind hearted, knowledgeable people here.
A quick Bio...
This started 12 days ago, first day it started, i was at work
had a strange sensation in my left eye, even went into the bathroom to see if my eye was drooping, that's how it felt.
But, it wasn't. although i didn't seem to be able to lift my eyelid further. I have had a low grade headache almost constantly since then with bouts of horrible horrible pain a couple of times a day.I am awakened by the pain in the middle of the nite, it lasts between 45 minutes and 1 1/2 hours. If i go back to sleep i wake in the morning in the same pain. Been to the ER twice in the last 4 days. They gave me a diagnosis of Tension headache. Doing some research the last couple of days it seems my symptoms are closer to cluster headaches. But its still not a perfect fit. I've already had a cat scan and mri, those are ok. Im trying to get an appt. with a neurologist i've been refered to. One thing i'm having happen that i have not seen listed is a wooshing in (mostly my left ear) that's in sync with my heartbeat. The pain is all over my head and i do not have the stabbing in the eye.
Well so much for a short Bio..... Any comments will sure be welcomed. Thanks so much , hope this is a good day for all. Rhonda

Title: Re: Help
Post by Bob_Johnson on Jul 5^th, 2007, 8:34am

While it's good that you have an appt with a neurologist, I do hope he has experience with headache issues. Many of them do not and/or have little interest in working with us. You may wish to ask his office staff about this question.

IF you are developing cluster--and that has yet to be established--your somewhat vague symptoms are not at all unusual. Many of us have had "wandering" symptoms for months or years before they settle down into a pattern which fits the diagnostic model of CH.

At this point, I'd avoid making any assumptions/conclusions. Work with the doc and start a journal of attacks/symptoms/changes over time. That data will guide the doc. Patience is one of the most important qualities we bring to this "interesting" challenge.

Title: Re: Help
Post by rhonda on Jul 5^th, 2007, 8:42am

Hi Bob, thanks for your reply. I'm too quick to make assumptions. Didn't realize that all neurologists would not be on top of headache issues....thanks again Rhonda

Title: Re: Help
Post by Guiseppi on Jul 5^th, 2007, 11:51am

Welcome to the board, Bob is right, try and find out if your neuro specializes at all in head aches. Then start keeping a detailed headache journal. The important points to log:

What time it starts, how fast it builds on the KIP scale, (see kip scale on the left) how long each pain level lasts. How it leaves, where the pain is and what kind of pain it is, stabbing vs throbbing etc. What effects over the counter meds do or don't have. From what you've described it's certainly possible your vying to join the club!!! If it turns out you do have CH this will become your second home. Either way wishing you some pain free time and some luck on your journey.

For now when the head ache starts try pounding down coffee or any of the energy drinks, Monster etc. The ones containing the combo of caffeine and taurine have worked well to abort headaches for many. Ice packs on the affected side help many when nothing else is available. Let us know how it goes for you.

Guiseppi

Title: Re: Help
Post by Bob_Johnson on Jul 5^th, 2007, 1:26pm

Well, in case you have need:

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.

Title: Re: Help
Post by Kris_in_SJ on Jul 5^th, 2007, 3:17pm

Hi and Welcome Rhonda,

You've already been given some great advice and links to follow for information. Load up on knowledge before you see a neuro - go informed!

My first cycle started with a sharp sensation in my left eye that left it drooping, and I had a constant low grade pain in my eye and sinus for about 10 weeks. Then, poof! Gone! By then I'd had scans, MRI's, numerous consults, etc. It wasn't until 4 years later that I had a classic and easily diagnosed cluster cycle.

I truly hope this isn't what you have, but keeping a jounal and seeing a neuro are your best bets for starting the process of diagnosis.

Hugs and PF Wishes,

Kris

Title: Re: Help
Post by Sandy_C on Jul 5^th, 2007, 5:25pm

Here's another welcome to you, Rhonda. I hope you don't have CH, but if you do, you've found the right place.

The journal is almost mandatory! Seriously, log in everything, time, length, pain level, what you ate, drank, and did. Make a copy of that journal and take it with you to the neuro. Your first clue as to whether this doc is going to be a good one is if he/she even looks at it during your first visit. If he doesn't read it, leave the copy with the doc and insist that he read it it, and that you will call him back to discuss it.

In addition to the energy drinks, like Red Bull, try drinking tons of ice water during a hit. When I'm hit, the pain will radiate down from my eye, in to my ear, and in to the roof of my mouth. I will go through about four 12 oz glasses of water during a 30 minute hit. It doesn't stop the pain, but it does, at least for me, it helps to control the pain in my mouth. A bag of frozen peas work wonderfully well placed on the most painful areas, head, eye, neck. Try Melatonin for the nighttime hits, it's over the counter, available in almost every health food store, and I get mine at the grocery store.

Read everything you can. Don't be afraid to ask questions here. Someone is always here and we'll help you all we can.

Sandy

Title: Re: Help
Post by Patrick_A on Jul 6^th, 2007, 10:04pm

Welcome!
One thing I have learned for sure is..... CH has many different forms and variations. A good Neuro will make that diagnosis. Then you can come back here for all the support and love that you may need.

Patrick_A

Title: Re: Help
Post by MR_FLOOR on Jul 7^th, 2007, 2:52am

Hey Rhonda,

I hope you figure out what is ailing you,you a in the right place though,this site is loaded with info and experienced and knowledgeable people there is much you can learn from it,do take advantage of it . Good luck to you.

Dave