Posted by Dave Emond (152.163.194.201) on May 31, 2001 at 12:20:35:
(Sorry for the long post, but please bear with me, I need your help!)
Well, my friends, it's been almost a year since I last posted in here. I'm sorry to see so many of you still here. This is never going to end huh?
I met many of you at the 1st OUCH convention in Vegas.
It's been a while, so you might remember me as the fool who quit taking medications. And many of you said once I got married I'd leave ya behind. Almost. Missed the convention this year because of a very strange cycle I've been going through this year. I find myself in need of some serious advice or information. So, I come crawling back to those who have basically saved my life when this all started. You'll need a brief history of my case (I'll try brief) in order to understand my dilema.
I first started getting CH attacks back in 97, but was misdiagnosed until 99. The drugs given to me then (Sansert, Vicodin, Fiorinal-COD) did nothing for the pain and took away my ability to fight back, which led to suicidal tendencies.
The same in early 2000 (Amitriylin, Imitex etc.) So I decided enough experimenting on me. 97 & 98 I was given everything under the sun! Nothing has ever helped, and seemed to only add extra side effects to the CH.
I had always been episodic, bouts coming late Jan. through the end of March. I believe not taking the meds anymore has given me much more strength, but I still do stupid things to try to divert the pain, very hard to stay logical under an extreme attack, most of the time I can regain composure and realize I'm injuring myself, other times my wife has timely caught me before doing too much damage.
I had always noticed that I started to become somewhat insomniac before a cycle would start. So this year I went to the doc (doesn't even deserve that much credit) and told him I knew my bout was approaching. He gave me some Remeron (an antidepressant) and wished me luck. The attacks came a few weeks later than normal, but in full force. So my "doc" gave me Singulair! Oh thanks, if I get asthma maybe I'll try this!!
I had gotten an MRI in 99, but they found a small piece of metal in my head and couldn't complete the testing. I had the metal removed and asked for another MRI every visit since up until now. Recently, I was coming down off an attack during an appointment, so when I saw my doc, I was pretty pissed at his wishy washy ways and let him know it. (I still don't think he's even looked up CH in his medical books, if he has any!). He made a bunch of promises and got me out quick. I went in again the following week under attack and brought my wife, I can't get around these days without help. He finally agrees to another MRI.
Okay, here's where I'm confused. The MRI test came back saying:
" There is a 1.6 cm polyp or retention cyst in the right maxillary antrum. Fluid is present within the right mastoid air cells.
The brain is normal. No mass, edema, hemorrhage, white matter disease or subdural.
IMPRESSION: Right maxillary polyp. Right Mastoiditis. Normal brain."
My "doc" is elated, "That's it! We can operate and fix you! Here's some antibiotics until your surgery, bye bye."
Now, like I said before, and have told this idiot, this year things have been different. Aside from the regular CH attacks, I was having other strange symptoms I'd never had before. Such as short losses of conciousness, dizziness, bumping into walls and falling down a lot. And yes, some type of fluid feeling in my right ear. What really pisses me off is that I went and got my records and previous MRI pics and notes, and found that even with the incomplete MRI the same message was there about the polyp! Why wasn't something done then?! These things eat away bone in the ear and skull!
But, I told my "idiot" that I know I still suffer from CH, the symptoms between Mastoiditis and CH are very different. And I believe the pain of the CH has made me not feel the pain Mastoiditis is supposed to produce. I told him I thought these were two seperate disorders, to which he insinuated I'm just plain stupid. I haven't killed him yet!
When I was first diagnosed with CH, I came home and started looking for info, and found this site. This was the ONLY site that described EXACTLY what I felt. I don't for a second believe I don't have CH, as the idiot would want me to believe. I'm going to see a different neurologist than the one who first diagnosed me, and an otorhinolaryngist on the 13th of June.
My "idiot" said there is no connection, I don't have CH and the two couldn't be related or going on at the same time. I think this is BULL! I wouldn't put boiling water on my forehead and temple for an ear infection! (One of my stupid diversion attempts). I have an extremely high tolerance for pain, and no ear infection is going to bring me to my knees. And what about the timing? I used to drop to the floor in extreme pain, and say it's two o'clock, and be right every time! Again between 8:30 and 9:00 everyday. Nowadays, they come whenever they feel like it, which is very often.
So, I known the polyp is there, I can see it in the MRI pics. But, can someone tell me if I'm right in believing I can be suffering from both disorders? I've got two weeks before I can see these specialists and am pretty upset. All my searching has led me to find no simulairities between the two.
Can anyone direct me to information about this? Or even, does anyone have possibly more than one head disorder along with CH? I understand I've got to wait until I see these specialists, but you all know all too well how long 2 weeks can be with CH. Please, I need some stress relief from all this, any info at all would be greatly appreciated. Thanks for bearing with my long post, you've always been there for me and I can't thank you enough!
Dave