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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> 1st Post - Newly Diagnosed
        
(Message started by: Mr_Rob on Jul 14^th, 2007, 12:54pm)

Title: 1st Post - Newly Diagnosed
Post by Mr_Rob on Jul 14^th, 2007, 12:54pm

Hello to all of you,

I am very thankful to have found this website so early. I was diagnosed 4 days ago with CH by an ER doc. I started having them about 5-6 weeks ago for the first time. After reading most of the information here, I am extremely thankful that my headaches are very mild as far as the frequency if not the intensity, compared to most of you and what they could be.

The first time I got one I thought it was sinus related. I got another about a week later and then 2 the next week and they gradually came more often until it is a daily routine although I do have an occasional day without one. I finally decided to see a Dr. about it though but wound up in the ER before my appt date.

I usually get mine at about 7pm. Always in the evenings and never in the day time yet. They typically last about 20 min and occasionally an hour. Always on the left side above and behind and surrounding my eye.

I have an appt with my Dr in a few days. This is a new Dr. as I had recently moved and I am concerned about the obscure information surrounding this disorder and finding a phys who has some experience and/or knowledge of how to treat it. The ER Doc prescribed Dolobid at 500mg twice a day as a preventative and Imitrex injections as an abortive. No transitional meds were prescribed or discussed. I have been very lucky in that I only had one mild ha since I saw him so I haven't used the Imitrex yet. I also haven't been able to find any link to Dolobid to CH treatment either. I have been reading up on medical treatments for CH so as to try to be prepared for my Dr. Visit. I am also holding out some small hope that what I am experiencing may be something else since they are so rare compared to the atypical sufferer.

The description I have given people to explain it fits the description of CH's to a T though with the exception of the frequency and I have been lucky not to have the middle of the night versions that wake me up.

Any advice for my upcoming Dr visit is appreciated. I plan to print out some of the information here to take with me, still sorting through it to determine what would be most helpful and effective.

A bit about me, I am 39 and have 3 daughters and am engaged to a wonderful woman who is an LPN. I work in software technical support department for a Healthcare billing company.

I have already found some wonderful advice and applaud the courage of you all in coping with this terrible condition. I can only hope that should mine worsen that I can face it with such strength and determination and in so doing prove to be a source of encouragement for others.

Title: Re: 1st Post - Newly Diagnosed
Post by MR_FLOOR on Jul 14^th, 2007, 2:24pm

Hey Rob,

We all encourage each other here thats the beauty of it.Welcome home bud.

Dave

Title: Re: 1st Post - Newly Diagnosed
Post by GrandPotentate on Jul 14^th, 2007, 3:21pm

I'm glad you found the site, sorry that you needed to look. You'll probably read that many of us were scared half to death before getting diagnosed and/or finding this support.

Symptoms vary from person to person, and even cycle to cycle. It keeps things interesting. If I keep an extremely rigid daily schedule (same time to rise, same time for meals, a cup or two of coffee in the AM, etc), 80% of my headaches are in the evening. There are a few days during cycle peak where I'm getting hammered with multiple hits all day and night, and a few rogues elsewhere. But for me, it is usually an evening thing.

Hang in there, and enjoy the folks you meet here.

Jon

Title: Re: 1st Post - Newly Diagnosed
Post by Kris_in_SJ on Jul 14^th, 2007, 8:16pm

Hi Rob,

Welcome and sorry you had to find us.

For the latest is medical treatment for this condition, please print out the following article and take it with you to your doctor's appointment.

http://www.brightok.net/~mnjday/chtherapy.pdf

It contains the most recent abstract of medical treatment available for clusters. It's rather quiet this weekend to to the cluster convention, but I'm sure others will be along with advice later.

I've never heard of using Dolabid for clusters, though Trex injections are a very good abortive for many people. Oxygen, when used properly (see the info to the left) is also safe and very effective as an abortive. Many of us use a Prednisone taper for transition, in addition to a good preventative like Verapamil or Lithium. These are all explained in the link I gave you.

The explanation of your cycle isn't unusual. When I cycle, I rarely have more than 1 per day, and they're always at the same time of evening - and, they always start with a stabbing pain in my left sinus.

Just know you're not alone. We're truly a family here. Never be afraid to ask a question, and keep us informed.

Hugs,

Kris

Title: Re: 1st Post - Newly Diagnosed
Post by thebbz on Jul 14^th, 2007, 9:56pm

Welcome

Ask for a referral to the neurologist from the doc. Ask the neuro is they have clusterheadache knowledge. He will be you leverage for future GP's you see that are ignorant. A diagnosis from the neuro will spell out treatment recommendations that the GPs dont know and carries alot of weight. You should get an MRI to rule out other causes of HA.
Print out the treatment link posted and do alot of reading here and you should be fairly well armed for the doc.

jb

Title: Re: 1st Post - Newly Diagnosed
Post by Kris_in_SJ on Jul 16^th, 2007, 8:32pm

Hi Jon,

I just found out that the link I noted above for you has been moved to another domain.

If still interested in viewing it, please use this address.

http://www.plainboard.com/ch/chtherapy.pdf

Hugs,

Kris

Title: Re: 1st Post - Newly Diagnosed
Post by Patrick_A on Jul 17^th, 2007, 5:08pm

Its kind of funny, but, I find that CH's change when you change. I worked 1st shift for a few years and I always got my CH's as soon as I got home from work and relaxed. I have also worked 2nd and 3rd shift but those always came after I went to sleep.

Makes no sense.

PA