Well, I ended up liking the doc... even though I didn't get the results I was expecting.  He believes after hearing my story and examining tender spots on my face neck and head... that I don't have cluster headache at all.  He thinks it is temporomandibular joint disorder.  TMJ  He RX'd me a non steroidal anti inflammatory drug... wants me to try that for 2 weeks... stay away from tramadol and let him know how I'm doing. 

I hate to say it... but he may be right.  This explains my sore throat every morning and difficulty swallowing too.  TMJ can also cause pain that mimics CH... but the difference is, there is a known cause for the pain.  If he is right, I am truly one of the luckiest ppl on this board...  If you don't mind, I may lurk around for awhile just to see how some others of you are doing before I fade away.  You've all been so good to me!  <snif>

PFD for all!    :)
Linda

Hoping this treatment regimen resolves your pain, Linda.  Although it's no picnic, it would be great if your condition turns out to be something that they can actually DO something about.

And yes...  I think I speak for everyone in saying that you're always welcome around here, no matter what happens.  :) 

All the best,

George

It's a reasonable plan. We are see more accounts of disorders which mimic Cluster making diagnosis and effective treatment of the pain more difficult, so ruling out alternatives is a sound approach.

Please keep is up to date....

Crossing our collective fingers for you, that would be GREAT news. And yeah, you can still hang out with all us strange peope! ;)

Joe

You keeping us posted as to your diagnosis, treatment plan, and success actually helps the CH community. What better way to pay it forward?

Do stay in touch.

Count my fingers as crossed that it is actually TMJ and the treatment works.

My sister in law suffered with terrible headaches also.  She was diagnosed with TMJ and had a surgical procedure.  She has not had a headache since.  Good luck to you

Dont think I've ever said "hope you have TMJ" to someone, but in this case Linda I hope that is it, as it would seem to be something curable.  Good luck!

Hello Everyone!

I am really frustrated and angry.  The anti-inflammatory drug the neurologist RX'ed me is not doing anything at all.  If anything the headaches are WORSE.  My daytime "shadows" are much worse... the middle of the night attacks are going on as usual.  Every night... 12, 3, and 5 (if I'm lucky enough to get back to sleep)

The neuro said if I wasn't 100 % he would send me to a dentist.  I've addressed the dental problem twice already and dentists say it isn't my teeth.    I don't have the classic clicking when I open my mouth and no jaw pain when I eat either. 

Worse, I let the neurologist get by with saying because I was a woman over 50 it couldn't be CH

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"Cluster headache is commonly considered to be a young male disorder, but middle-aged and elderly women may also be affected. The characteristics of the pain and its manner of occurrence were similar in our cases to those reported in the young male population. "

I know it might make sense to find another doctor... but really... should I expect any different result? 


This is very frustrating!  I was a little optimistic at first... but I thought I'd see some results beginning to  have an affect by now.  Patience has never been my strong suit I guess... but so much time is wasted chasing wrong conclusions it is maddening.

We were invited out for coffee with 3 other couples this morning and I had 2 attacks during the time we were there.  I've never experienced an attack in the company of others and it was hard to keep up the pretence of sociability.  If they get any worse, I will join the ranks of those who dread being in social situations or at a job when a hit might be embarrassing.


Sorry to be such a downer but I'm sort a "ticked"

Love you all
Linda

Linda,

Did I hear you say anti-inflammatory regimen?  Please check your email and also the post titled: "123 Days PF And I Think I know Why" , on New CH.com Forum. To view it, click the link below:

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Take care,

V/R, Batch

Granny Arizona wrote on Aug 2^nd, 2011 at 8:50pm:

The anti-inflammatory drug the neurologist RX'ed me is not doing anything at all.  If anything the headaches are WORSE.  My daytime "shadows" are much worse... the middle of the night attacks are going on as usual.  Every night... 12, 3, and 5 (if I'm lucky enough to get back to sleep) The neuro said if I wasn't 100 % he would send me to a dentist.  I've addressed the dental problem twice already and dentists say it isn't my teeth.    I don't have the classic clicking when I open my mouth and no jaw pain when I eat either.  Worse, I let the neurologist get by with saying because I was a woman over 50 it couldn't be CH I know it might make sense to find another doctor... but really... should I expect any different result?

Despite some symptoms not evident for TMJ, this doctor seems unconvinced of clusters, afterall you're a woman over 50.  :)  If you do have CH, it appears this doctor is resistent to the idea and the treatment needed would be long away.

What if TMJ was a possibility and you have clusters?

I have to agree, a doc who thinks because you're a woman and over 50 it can't be CH.........that's so 1970's med school.... :-/

Joe

If you have the option of locating a headache specialist it's likely your best option. Some of us have had success in educating a doc who is open to hearing--and that will have to be your judgment.

If you feel it necessary to give your doc another chance, suggest you print out the PDF file, below and give it to him. Point out the sex ratio data in the first paragraph!

If he blows off this article, I can't imagine a better reason for seeking a new doc.

---

Thanks for your ideas everyone... when I first started working with my primary care doctor, she told me I was taking the first step in a VERY long journey.  Headache DX is a matter of elimination.  She also said these things have a way of "revealing" themselves in time.  First, we thought migraine... then trigeminal neuralgia... then sinus blockage.. dental... food allergy... and on and on it goes.  I guess a cluster DX comes when nothing else is left

Hey Batch...  I did start your program with vitamin D3, fish oil, and calcium about a month ago...  I can't say it is helping the headache... but I am planning to stay on it because I know it will be beneficial in other ways too.  Maybe, in time, it will all catch up and come together!

Love you all
Linda

The neuro sent me to a TMJ specialist.  I thought he would be a dentist... but he is a physical therapist.  He gave me exercises... lying on the floor with my feet on the wall blowing up a balloon.  And another floor exercise that seems to have nothing to do with my head or headaches.  What a waste of time!

I accompanied my husband to our primary care doctor and she wants me to try tegretol.  She thinks it is trigeminal neuralgia.
She said if the tegretol doesn't work, we'll know in a month that it isn't trigeminal neuralgia. 

My attacks are becoming stronger as time goes by and they last longer.  I'm also getting a lot more daytime hits.  This isn't fun anymore... I want OFF!

  Oxygen does not seem to work for me (may need a higher rate valve?)  I have a 25 lpm now.  Maybe i just hope it won't go full blown and don't get it on in time? 

Anyway... I just wanted to update my progress.

Be well everyone.
Linda

Pain-Free Wishes to You!