Hi.
Long story short, I've had these headaches since April, so almost 5 months, with maybe a rare day here & there without a headache. Doctor did tests, gave me medicine for chronic sinusitis (did nothing, of course) and recently did a scan, waiting on results, though dr said, "good thing is,  its not cancer, we'd have heard back by now!" YAY!

so research and discussions have finally lead me to discover about Cluster headaches. Upon reading and reading.. wow.
sounds like what I've been going through.
All of it sounds about right, except for the eye pain. Mine are more temple area and forehead. The tingling of the scalp is in between attacks.
Is that still considered a Cluster?
I haven't spoken to my doctor yet, but left a message for her to look into this possibility....
from the description of the trigeminal nerve, the pathway of pain is still pretty spot-on. And I have noticed at times my left eye seems sunken in.
I'd love any feedback.
Thanks.

Hi, welcome to the cluster family, but sorry you've had to find us. Keep reading these boards and you will learn a lot.

Every one's clusters differ. One persons clusters can differ enormously from episode to  episode, so don't be surprised if you think you've got it under control and then it morphs.

My eye becomes red and runs. My eyelid becomes puffy and droops. But my eye doesn't hurt. My temple however - well that's a different story. I'm sure I don't have to describe it to you. The pain also spreads to the sinus area deep behind my nose, and to my teeth.

As I said, read, read, and read more. There is a fountain of knowledge to be had here and many remedies that you will find invaluable. Check out the vitamin D3 regimen which you will find under the heading "123 days pain free". It seems to have taken the boards by storm.

You will also find the nicest people on earth, always willing to help and share tips, and to let you know that you are not alone. We all have one terrible thing in common - cluster headaches.

Take care, Maz.

Hi Maz, great to meet you, and thank you so much.
Checking on this D3 suggestion immediately.
Finding this explanation to my pain has been an intense sensation of sadness as well as relief. Not life threatening, yet daily-life threatening. How come this isn't more mediatized??
Nice to know I've found a comfort zone, here.
:)

It's common for new cases of Cluster to have "wandering" symptoms--changes in pain site, intensity, duraation, etc. May go on for several months before settling down into a fixed picture.

It wold unwise to start any treatment program without your doc's knowing about it and approving. He can't treat you and have a parallel treatment being used without screwing up his ability to ealuate what is going on.

======

Looks like you have posted messages in two sections with different information in each. Don't! Makes it confusing and it will mislead folks who are trying to understand your situation and offer coherent advice.

Keep all messages in one section lest we lose continuity.

Hi Emzie. Could be cluster headaches, or a closely related condition known as paroxysmal hemicrania. This article explains some differences:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
You should get checked out for both.

My attacks vary... a full blown attack involves pain around and behind my right eye and nose on the same side, my nose is blocked up on the same side, and right temple. Other times when I am not having a major attack, I have the tingling scalp on the right side. At these times I have shooting pains in my right temple that only last a minute or so at a time, and no pain in my eye. I think it is the beast just reminding me he wants to come out and play.

Hi Bob,
I posted in the "get to know you' section after this post. I only added some info pertaining to getting to know me. I didn't mean to mislead anyone. I don't think I went in alternating information routes. Anyway, thanks for the info, I am an information junkie, so reading on the Vitamin D and Magnesium regime was very informative, I hope my doctor will take my suggestion seriously, seems as though so far she hasn't been too focused on resolving the mystery.

Thank you, FrankF, I'm reading up on it now :)

So today I finally got the phone call from my family doctor, concerning the CT scan I did 5 weeks ago. Seems that she’d been having a hard time getting the results, and finally did last night. She said the test was normal. No cancer, no tumors, no (something else I cannot remember).  I explained about what I suspected, and we discussed the possibility of it being Trigeminal nerve damage. I told her I have a specialist in the field lined up, only needing her referral. She agreed. Is sending to me the papers by mail along with the test results for the Neurologist. I got my appointment for October 2nd.1 more month of this pain that is getting worse… even though I have been taking D3 since last week. (Yes, I know, I shouldn’t have taken anything whilst awaiting diagnosis… but I did anyway, I take full responsibility for my actions. So far, no change in my condition)
The pain is bad. Having nausea now. Very hard to work. I wish my doctor had offered a medical leave permission…
Anyway. Enough whining for now. *sigh*

Any chance you can get the family doctor to contact the neurologist and bump you up the priority list, suggesting cluster headache is suspected? Sometimes helps to get them to understand the urgency if the neurologist knows what cluster headaches are.

My last cycle I got the doctor to prescribe O2... I think it was a Thursday or Friday... and their office called to tell me the O2 would be delivered the following Monday. I freaked out and told them Monday won't do... please make it today. O2 was delivered a few hours later.

PS, feel free to post whatever you are thinking, whining is OK here.  ;)

Hi Emzie,
Have you taken the cluster quiz yet? the link is to your left
on this page, it will help answer any niggling :question you
have.

Good Luck, Hoppy.

Hi, I started to take it, but without a diagnosis I couldn't answer most of the questions.
:) Thank you Hoppy.
FrankF, the secretary for the neuro said I should call every monday & tuesday to see if there are cancellations I could squeeze into. I will do that.
One thing is for sure, the stress of waiting.. of the doctor not informing me of results was bad, terrifying. I have a nasty habit of letting my mind create the worst scenarios.
Not helpful. Why does Ativan help?
I don't want to have an addiction to that to deal with on top of the condition, but I am out of my head with pain, worry and guilt (because I'm bitchy and grumpy and my family suffers for it).

Hi, I started to take the quiz, but without a diagnosis I couldn't answer most of the questions.
:) Thank you Hoppy.
FrankF, the secretary for the neuro said I should call every monday & tuesday to see if there are cancellations I could squeeze into. I will do that.
One thing is for sure, the stress of waiting.. of the doctor not informing me of results was bad, terrifying. I have a nasty habit of letting my mind create the worst scenarios.
Not helpful. Why does Ativan help? I try to take it only occasionally because I don't want to have an addiction to that to deal with on top of the condition, but I am out of my head with pain, worry and guilt (because I'm bitchy and grumpy and my family suffers for it).

Hi Emzie,
You don't need a diagnosis to do the quiz.The idea of the
quiz is to see if you fit the picture of a cluster head sufferer.
Then you can talk this over with your neuro.

Hoppy.

Well, I succeeded in seeing the neuro yesterday, got squeezed into a cancellation spot. However, he seemed to think its 'only migraines' and I shouldn't have bothered him with this. Its a GP's job to identify that kind of thing................it was a ridiculous notion that it could be cluster headaches.
Okay........

Well. Next great news he gave me was that it took too long to get treatment so now medicine might not work.
He gave me cortizosteroides for 3 days, then Naproxen for the pain (Pfft Aleve did nothing for me) and Relpax. Also gave me a daily thing to prevent migranes, Topamax.

So, if any of you would be so inclined, say a lil prayer for me before I go crazy?
Do we have prayer thread here somewhere?

Oh, and if I'm not a CH, can I still stay on this forum?

Hi Emzie,
The following doctors in Quebec have been recommended by other Canadian CH sufferers. 
-------------------------------------------------------------------
Quebec
Montreal:
Dr. Michel Aube
Montreal Neurological Institute

Dr. Daniel Luis Filipini
La Clinique De La Migraine De Montreal

Dr. Stephane Ledoux
La Clinique De La Migraine De Montreal

Dr. Eric Magnoux
La Clinique De La Migraine De Montreal

Dr. Frederique Souchon
La Clinique De La Migraine De Montreal

Dr. Jeannine Talbot
La Clinique De La Migraine De Montreal

Dr. Ivan Woods
Montreal Neurological Hospital

Dr. Gregorio Ziotnik
La Clinique De La Migraine De Montreal

Trois-Rivieres:
Dr. Andre F. Gagnon
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You may consider contacting one of these doctors for a 2nd opinion, certainly a doctor visit that would make you feel comfortable.

Good luck! ;)
-Gregg in Las Vegas

Thank you, Very much.

Well..... go figure, the migrain clinic isn't taking any new names until January, when a new waiting list starts up again...
yay Quebec.

What about Dr. Michel Aube at Montreal Neurological Institute?

or Dr. Ivan Woods at Montreal Neurological Hospital?

or Dr. Andre F. Gagnon in Trois-Rivieres?

Good luck. ;)

-Gregg in Las Vegas