I think I might be joining the club....

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Posted by Mike Rebeiro ( on June 25, 2001 at 23:09:06:

I could use some advice about CH. It looks like this is what going on with me,but I`m not sure and I have some questions about the symptoms that I havent seen any clear explanations of.
Perhaps me questions have been addressed earlier on this message board,but I couldnt possibly read all the posts with the pain I`m in at the moment.

Heres a bit of background that may or may not be relevant......
I`m a 30 year old male. I`ve never had any serious problems with allergies or headaches or sinus. I am however allergic to specific smells such as certain perfumes,colognes,hair products etc...these things have always given me headaches and all around nausea. These things have always been like Supermans kryptonite to me and I end up feeling sick,weak and wanting to lie down. Doctors never saw this as an issue that needed to be medicated and advised me to stay away from people wearing these offending scents.
I dont drink anymore because I used to get what I called an "immediate hangover" after just a couple drinks.
I smoked cigarettes for the last 15 years (1 pack a day) until 3 months ago when I started the Nicoderm CQ patches. I`m now done with the patches AND cigarettes.

Heres my problem.....
Two days after going on the Nicotine patches I started having what I thought was sinus headaches.(face and brow presure,stuffed nostril,headache etc...)
I was annoyed and concerned by this and called my doctor for an appointment,but his office is now open only three days a week and he couldnt see me for a month and a half.
I explained my symptoms to the office nurse and she relayed it to the doctor who ended up calling in a prescription for an antibiotic. I took this antibiotic for two weeks,but nothing got better.
While on the antibiotics I learned that nicotine patches could cause headaches and I started to feel a bit less concerned about it knowing that I wouldnt be on the patches forever.
By week four the headaches became really bad and I thought I was going to go nuts. I would wake up without a headache,but as soon as i moved my head it would begin. Sometimes It would go away,but if I came across one of those smells I mentioned earlier it would come right back. It wasnt just the ordinary smells this time like perfumes,colonges hairsrpay etc...,now it was almost everything I smelled. Cut grass, gasoline,the soap I use everyday,car smells,my girlfriend and even a hamburger cooking on the grill triggered the worst headaches I`ve ever had!

Week five and I`m just about at the end of my rope. I call my doctor and tell the nurse whats going on,but i still cant get an appointment. What I do get is another prescription for a stronger "super" antibiotic. I take these new pills for two weeks,but nothing changes. I`m also giving a rhinocort inhaler,but it just seems to make things worse because i seem allergic to the smell of the propellant. During this particular telephone battle with my doctors office I`m given an appointment to see a ENT. The appointment of course wasnt for another 3 weeks. I get in touch with the ENT on my own and he sends me for a CT scan before my appointment.

Week seven and I`m extremely upset!
I go to Home Depot and buy the best respirator they have. I figure I`ll just have to wear this respirator 24/7 and I`ll be fine. I`m sure there are better ways to go about this,but I doubt my insurance covers plastic bubbles. Well after bringing the respirator home,trying it on and looking in the mirror,I come to the conclusion that you just cant go around wearing one of those things.
I call my doctor again and once again cant get an appointment. I tell the nurse that I cant take much more of this and she says she`s going to call me back. The doctor ends up calling me back this time,but he doesnt have any idea why he`s calling me and sounds like he`s only calling to get me to stop bothering the nurses. My head is POUNDING and we end up exchanging some not so nice words. He decides to withdraw as my primary care doctor via a registered letter.

Week ten comes along and I`m still getting headaches,but now they are a bit different. They are still on the right side of my head. My right nostril STILL feels stuffed and heavy. My eye STILL feels like its going to pop out of my head and is watering with a droopy eyelid,but now my headaches start in and above my eye and shoot all the way down to my jaw below my ear. It`s not steady,but pulsing. It hurts so bad that I have to grit my teeth while awaiting the next pulse. This happens multiple times a day and lasts anywhere from 15 minutes to over an hour and then just goes away. It makes NO difference at all what pain or sinus medications I take.

Today was the day of my ENT appointment and I was told that I dont have a treatable sinus problem. In fact I`m told that there nothing at all wrong with me.
I`m having a hard time believing what he`s saying while i`m sitting there with my right nostril feeling like it`s plugged up and an eye that feels like it`s been kicked by a boot,but what can i do? I saw my own CT scans with him and had actually done some research about reading the scans myself while waiting for my appointment. My scan really did show that my passasages are clear.
Today was actually the first day i didnt have a headache,but while waiting for him to get me an appointment for an allergy test tomorrow,I was subjected to a womans perfume in the waiting room and my eye started to water and the pain began again.
I`ve had the headache several times today since then and have it again right now. I have to keep stopping my typing to move around and hold my eye.

here are my questions....
During one of these CH episodes does your nostril feel stuffed even when there is no headache?
Does your eye and face around it also feel sore when there is no headache?

This is what I havent found info about. I know the sore eye,face an plugged nostril are symptoms of CH,but I have trouble with these things all the time even when there is no headache. I also get sweaty when the headache is at it`s worst.

I`m sorry if this has meade little sense,but It`s taken me about 2 hours to write this and i`ve had four episodes with the headaches during it and even now I can feel the headache lurking behind my eye. I think the worst thing about this (CH or whatever it is I have) is the soft pain in and around the eye that preludes the big pain coming around the corner.
This is without a doubt the worst thing I`ve ever had to deal with. Over eleven weeks with at least one headache every day.
You should see the mess these headaches have made out of all my bills and finances during the last few months. I`ve tried to explain what`s been going on with me,but I think my bank and credit card companies think I`m smoking crack cocaine.

Thanks in advance for your help and hope you can make sense out of this.


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