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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Diagnosis from Neurologist
        
(Message started by: blarneybeal on Oct 10^th, 2006, 12:02pm)

Title: Diagnosis from Neurologist
Post by blarneybeal on Oct 10^th, 2006, 12:02pm

Went to Neurologist yesterday and he said I'm having atypical migraines and it would be so RARE for me to have cluster headaches because I'm female. I have had migraines before and the lst couple of headaches I've had were unbearable with facial pain - cheek bone and upper teeth. I couldn't stand having anything touch my face on the right side where the pain was at. Nothing touched the pain.....Tylenol, Advil, Hydrocodone, and even Oxycodone. I paced the house, trying to get away from the pain I guess, I couldn't sit still when it was at it's worst. I dozed off and on for 2 1/2 days only to awaken with mind blowing pain. I wasn't sensitive to light like with my migraines in the past?? I was nauseated, probably because of all the meds I was trying to get rid of the excruciating pain. I'm scheduled to have an MRI done tomorrow night and doc asked me to keep a headache diary to look at in 3 months. I hope it's not CH's - I honestly don't know how you deal with them. Reading some of your stories...........I'm sorry for what you endure! Anyone else diagnosed with migraines first??

Title: Re: Diagnosis from Neurologist
Post by Bob_Johnson on Oct 10^th, 2006, 12:58pm

For several years the medical literature has pointed to the change in male/female rates of CH--with more women being diagnosed than in the past.
------------------
Headache. 2006 Sep;46(8):1246-54.

Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468 [PubMed]
========================================================================================
Curr Pain Headache Rep. 2003 Apr;7(2):144-9.

Epidemiology of cluster headache.

Finkel AG.

Department of Neurology, University of North Carolina, Chapel Hill, 3114 Bioinformatics Building, Chapel Hill, NC 27599, USA. finkela@glial.med.unc.edu

Cluster headache is rare, occurring in less than 1% of the population. Studies suggest that, in addition to the pain and associated autonomic disturbances recognized to be characteristic of the syndrome, patients also may experience nausea, photophobia, behavioral agitation, or restlessness. A decreasing male:female ratio also has been noted, perhaps attributable to lifestyle trends adopted by more women that were previously associated with men, such as tobacco use, alcohol consumption, and working outside of the home. The relationship between cluster headache and hormonal events does not appear to be strong. Hormonal influences on the chronic form of cluster headache in women are a subject of investigation. The emerging understanding of the genetics of cluster headache increasingly suggests a genetic component, with familial transmission now recognized to be more common than previously appreciated. Head trauma, coronary artery disease, and migraine appear to be present in more patients with cluster headache than can be explained by chance alone. Ethnic and racial differences in prevalence are less well understood.

Publication Types:
Review

PMID: 12628057 [PubMed]

Title: Re: Diagnosis from Neurologist
Post by marlinsfan on Oct 10^th, 2006, 9:16pm

on 10/10/06 at 12:02:14, blarneybeal wrote:

Went to Neurologist yesterday and he said I'm having atypical migraines and it would be so RARE for me to have cluster headaches because I'm female.

Anyone else diagnosed with migraines first??

Your neuro is outdated still thinking CH only hits us men. Get a new neuro.

I was diagnosed with migraines for many years until my current Neuro threw CH at me.

Title: Re: Diagnosis from Neurologist
Post by Richr8 on Oct 10^th, 2006, 9:43pm

Hi and welcome!

I thinkthat the first thing you need to do is be sure yourself that you have CH. Have you taken the CH quiz on the left panel? If so, and you meet the criteria, print out the information here:

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

and share with your Neuro. If he/she is reluctant to review the material and still insists that you do not have CH, it may be time to shop around. There is no known remedy that works for everyone all the time, so it is best to tailor a treatment that works for you. If the neuro is unwilling to take a team approach at relieving yor suffering, again, if you have the option, shop around.

I would also highly recommend Oxygen therapy, as it works wonders for many of us and is virtually frre from side effects. There is plenty of info about this also on the left panel.

Title: Re: Diagnosis from Neurologist
Post by burnt-toast on Oct 11^th, 2006, 6:03pm

Yes, over 12 years ago I was diagnosed with atypical migranes and told by a Neurologist that I might never get a valid diagnisis. He added that if he could reduce my pain that should make me happy. I lived with this misdiagnosis for two miserable years.

My wife actually diagnosed me - found CH information that we took to my GP and to the Neuro. who had diagnosed me with migranes. Explained how it fit my symptoms perfectly - it absolutely pissed them off that we disagreed with their migraine misdiagnosis.

Sought help from a Neuro. at a headache clinic who reviewed my test results/symptoms and couldn't believe that another neurologist would diagnose me with migranes. He took me off of the meds. for migranes (mostly useless pain meds.) and started me on Lithium Carbonate - provided the first improvement in my condition in two years.

Get to Neurologist who is familiar with CH, preferably one treating CH patients. Go through the normal testing to rule out other causes and get a diagnosis that you agree fits your symptoms.

Tom

Title: Re: Diagnosis from Neurologist
Post by Charlotte on Oct 12^th, 2006, 6:00pm

How did the MRI go?

What meds did the neuro instruct you to take and in what pattern?

Have you gotten any relief yet?

You know, diagnosises come and go.

Charlotte

ps I forgot to say, welcome aboard, and I hope you don't have ch. good luck.

Title: Re: Diagnosis from Neurologist
Post by blarneybeal on Oct 16^th, 2006, 11:28am

Neuro gave me a script for Zomig - had whopper of headache this past Saturday and Zomig didn't touch it, just made me feel nauseated.

I'm confused though, I had this headache for about an hour - hour and a half then it got better for a few hours, then came back with a vengence.......for about an hour - hour and a half again. Not sensitive to light like migraines I've had in the past either. Haven't heard anything from MRI done last Wed. night. Doc said I could call this Thursday if I hadn't heard from them.

I took the CH quiz and it pointed to CH??

Title: Re: Diagnosis from Neurologist
Post by nani on Oct 16^th, 2006, 11:51am

A hit can last anywhere from 30 minutes to 2 hours (occasionally they'll go longer). They reoccur (sometimes with a pattern) throughout the day and night.
Some people have light sensitivity with CH, and some, like me, find bright light can trigger hits. I agree with "find a new neuro".
pain free wishes, nani (another woman with CH, and a total of 27 years with the wrong diagnosis)

Title: Re: Diagnosis from Neurologist
Post by GeorgiaPeach on Oct 16^th, 2006, 11:58am

I agree with everyone, as a female CH sufferer I can tell you that females DO get CH's and their numbers are on the rise as Dr's are becoming more aware that us girlies can get the pain too. Sorry you are suffering, we know how you are feeling. I went 8 years with being misdiagnosed so I know how frustrating it is! How long has this cycle lasted? The diary is a good idea, write everything you were doing before, during, after a strike. It will help with the diagnosis and will help you learn your triggers

PF wishes!

Title: Re: Diagnosis from Neurologist
Post by chopmyheadoff on Oct 24^th, 2006, 4:40am

quote "I'm sorry for what you endure! Anyone else diagnosed with migraines first?? "

Oh yes

[smiley=argue.gif]

Title: Re: Diagnosis from Neurologist
Post by G on Nov 5^th, 2006, 3:14am

Hi all, I was diagnosed with migraines,tension,tmj,chronic sinus infections etc.. had cats,mri's ,xrays...went to many specialists ,dentist,chiropractic,neurologist said clusters about ten years ago.as far as being light sensitive.....i'm dark sensitive,i sleep with the light on ,and when i get one i turn on every light around me (every room that i can see darkness) i go nuts in the dark ,I can't even close my eyes,except when the pain closes them, then I walk blind,but can still sense the light,different types of light appear to be better than others too.wierd huh ??I need a padded hallway at least four feet wide i think ,with mayby some tire feelers to let me know before i smack into a wall ;;D,good luck ,G