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        Cluster Headache Help and Support >> Cluster Headache Specific >> Before Diagnosis
        
(Message started by: michael on Jun 12^th, 2007, 7:10am)

Title: Before Diagnosis
Post by michael on Jun 12^th, 2007, 7:10am

I have noticed that there are many people on this site who, like me, suffered with CH many years before they were diagnosed or had even heard of CH.

I suffered these things for 30 years before I found out what they were - the few times I tried to get help I was always told it was sinusitis.

To me they were something that was just part of my life, returning every year like clockwork for a couple of months (luckily only once a day - however it could last 3 to 4 hours).

There was never anything I could take to even touch the pain so I came to accept them as me.

Once a cycle started I knew the time of day for the hit for that cycle and I had to deal with it - I had no choice.

Hopefully it was a night time hit. If it was during the day at work it became much harder to hide, but hide it I did most of the time, because it seemed impossible to explain an illness that had no name apart from a headache to co-workers. Luckily I've always worked in an office job where it became more easy to go and hide, provided I appeared now and then so I wasn't missed too much.

I think the regularity made it somewhat easier to deal with, knowing the time of the hit ment I could prepare, and get my work done before and after.

I also think it has been harder to deal with since I know what it is, I think the medication I have had has morphed it considerably.

Just curious how other people delt with it before being diagnosed.

Title: Re: Before Diagnosis
Post by Redd on Jun 12^th, 2007, 8:26am

One thing that I think everyone will agree with, is that the "beast" morphs for all of us from time to time.

I went about 20 years before I was diagnosed and treated correctly. I never really had remissions, just high and low cycles all that time, which allowed me to believe the mis-diagnosis's.

Senior year of High school, the docs told my Mom that they were migraines, and to darken the bedroom with a blanket over the window and have my lay down. Well I couldn't lay down and Mom and I got into some pretty bad verbal battles back then.

I was in a car accident and then they thought it was TMJ and I wore braces for 2 years. Didn't help.

While I was married and had insurance, there were numerous trips to the ER during high cycles. Massive Migraines they called them. In the beginning during high cycles I was shot in the ass with morphine and sent home. During a low cycle I had swabs stuck up my nose and cultured. Mold allergy they said, because my husband worked at the waste water treatment plant and he brought mold home in his hair and on his work clothes everyday. Round after round of worthless anti biotics and allergy meds. High cycle appeared once again, and this was my first experience with imitrex injections. What a life saver. But still they were called migraines.

Got divorced, and I just had to wing it. There was a clinic on campus, but they were limited to what they could do, and they tried initrex tabs, but still I suffered. For the "allergy" attacks during low cycle I would wake in the night, take 4 sudafed and 4 Tylenol PM's and rock on my bed untill I thought the meds "kicked in". There were many times during high cycles that the pain would go down into my molars, and I'd be in the bathroom with pliars and dental floss trying to pry out my own teeth in an attempt to relieve some of the pain. My teeth are very damaged now from that and all the clenching of my jaws over all these years.

What happened to finally get me diagnosed correctly, was when I tried to quit smoking cold turkey. The beast didn't appreciate the sudden change in the seratonin levels in the brain and morphed into 4-6 hits a day. The man I was dating at the time was afraid it was annurisms, so talked me into seeing the doctor and the rest is my CH history.

Title: Re: Before Diagnosis
Post by Bob_Johnson on Jun 12^th, 2007, 12:43pm

Headache. 2000 Oct;40(9):730-5.

The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.

Klapper JA, Klapper A, Voss T.

Colorado Neurology and Headache Center, Denver 80218, USA.

OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.

PMID: 11091291

Title: Re: Before Diagnosis
Post by thebbz on Jun 12^th, 2007, 8:17pm

Thank you Bob. Good info.
jb

Title: Re: Before Diagnosis
Post by ClusterChuck on Jun 13^th, 2007, 12:56am

Before I was properly diagnosed, I kept asking why I was "pretending" to have pain ... As that is what I was told I was doing. For the first 6 years, I was treated as a psycho, because they couldn't find any reason for the pain ... I was faking it, according to them.

So everytime I got hit, I kept trying to convince myself that I was NOT in pain ... YAH, RIGHT!!! That didn't work for shit! But, with all these whacko "experts" telling me I was crazy, it is no wonder that I am so nucking futs now! It REALLY messed me up, BIG TIME!!!

I guess I am one of the few, on here, that has it in his records, and certified that I am a nut case!!! The rest of you are just "pretending" to be loopie!! LOL

But then I got properly diagnosed!! WOOHOO!!!

Chuck