Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Hello all. Glad to have found this site! (Read 1159 times)
mcallon
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Hello all. Glad to have found this site!
Sep 19th, 2009 at 8:42pm
 
Hello guys n' gals. I am a thirty 32 year old male who's married (no children yet) and currently living in Chicago. I'm sure you all can understand how glad I am to have found this site. This a relatively longish post, so be forewarned. Smiley

When I started college, I was diagnosed with classic migraines by a neuro to whom I was referred by an ophthalmologist to whom I was referred by a GP. I went in because I had "the worst headache of my life" one day while at school, and it scared the heck out of me. At that time, the pain started behind my left eye, and I had nausea, sensitivity to light, etc, but it basically stayed behind the eye and didn't radiate to any other locations. The neuro prescribed acetaminophen. This script didn't seem to help much, but since I wasn't getting the pain frequently and I hated pills, I just dealt with the headaches as best I could throughout the years.

At some point, the headaches switched from being behind the left eye over to the right, and then the pain started radiating down my scalp to the base of my neck. It felt like a burning line of pain that followed the contour of my head.  I still had the same symptoms as before: nausea, sensitivity to light, etc. I basically lived with these for the past 7-8 years thinking they were migraines. I should have went back to the doc when they switched sides, but I just assumed that the change to the other side was no big deal.

Now, keep in mind many of the headaches I have had through the years have put me out of commission for their duration, but I'm thinking it's migraines. There would be periods of months where I wouldn't get them at all, and I thought that it had something to do with me sleeping better, eating better, or being less stressed. In short, I didn't recognize it as a cycle. I was grateful for those periods, but could never seem to figure out exactly what gave me those periods of remission.

Fast forward to this year. I went PF for most of the spring and all of the summer. However, I started getting "my old friend again" about two weeks ago. Things were going as they usually went with the nausea, mild sweating, occasional runny  nose, tearing, etc, and then, about a week ago,  I had a whopper so bad that I couldn't do anything but rock back and forth and pace the floor in agony. I couldn't sit still even though I was exhausted. I could barely keep my balance as I wobbled down the stairs from the second to the first floor, trying to get a ziploc bag and some ice. I was alone at the time, and with that pain...it was one of the worst moments of my life.

With this recent cycle, I was getting headaches every day, but most of them were mild enough where I could still get some work done. When I had the whopper, I was completely brought down by the pain. It started off with  what I would call a moderate headache, and when I went to lay down to try and "sleep it off," within five minutes of putting my head to the pillow, the pain intensified exponentially. As many of you have mentioned in your posts, I thought I might be having a stroke or aneurysm...I was terrified because the pain had never been so bad. The pain had me in its grips so tightly, I didn't even rationalize that I might want to go to the ER. I was just trying to deal with the pain.

I made an appointment with my doc for this coming Tuesday, but this past week I have been having 3-5 attacks each day, most were mild, but some were bordering on epic. Yesterday, I had 5 of them with roughly only 2 hours between each. They were waking me out of my sleep over the past few days, so on top of all this pain, I am becoming sleep deprived.

My wife felt so bad for me, and she has been so supportive these past few days, even though she has been ill herself. She happens to be an internist, so she did some research and decided to prescribe 5mg Imitrex inhalers for me to use until I can get to the doc on Tuesday. I was supposed to get the inhaler this morning, but I got an attack and could not drive myself the 5-6 blocks to the local Walgreen's. My wife drove me, and it seemed like an eternity before I actually got the inhalers in my hands. When we pulled up to the window, they said it would be another 15 minutes. At that point, the pain was so bad, I felting like screaming at the poor pharm tech.

Finally, I got the inhaler and gave it a shot. It seemed to help take the edge off the headache in about 5-10 mins. The headache faded, and now I am enjoying the longest PF period in the past 48-72 hours.  Tonight will be a test: I have been waking up twice at night in the middle of an attack. If that happens, I will try the inhaler and see what happens.  At least I have something to hold me off until I get to the doc and get on the road to a new diagnosis and treatment.

The thing is I haven't yet been diagnosed with CH, but I am just about certain I will be. It is a wonderful feeling to finally know that I might be able to effectively manage the pain, now that I think I know what I have dealing with all these years.   

I have been reading this site extensively the past few days, and I am so glad to have found a place where others who have to deal with this thing can support one another.

Thanks for taking the time to read this. For now, it's three cheers for CH.com and Imitrex. We'll see what the upcoming days bring.

Mike
Back to top
« Last Edit: May 15th, 2010 at 5:35pm by mcallon »  
 
IP Logged
 
MPMIII
CH.com Veteran
***
Offline




Posts: 112
Alabama
Gender: male
Re: Hello all. Glad to have found this site!
Reply #1 - Sep 19th, 2009 at 9:51pm
 
Mike,

The first step is to get a good neuro and proper diagnosis.  Read all you can here and feel free to ask as many questions as you want.  You'll find that O2 (link on the left) works wonders.  Prevents same my my ass. I take verapamil daily. I'm a chronic but manage with my prevent, O2 and imitrex injections.  The nasal spray never touched my CH. You've found a good place, with good folks; just sorry you had to find us.  Best of luck and get to a neuro asap. Someone else will be along shortly with link on finding a good doc.    
Back to top
  
 
IP Logged
 
RichardN
CH.com Hall of Famer
*****
Offline




Posts: 963
x1|Crossville|USA,Tn
Gender: male
Re: Hello all. Glad to have found this site!
Reply #2 - Sep 19th, 2009 at 11:35pm
 
  Okay . . . start a journal now.  Starting with the next one, note the time, duration of attack, pain level (usually we use "the kip scale" for this . . . link on left).  This will come in handy when you see your doc Tuesday.

  Take the "cluster quiz" on the left, and see how you do .  .  let us know.  Also review the "cluster traits" link and see how much of it sounds like you.

  I'm suggesting the above because your description of your attacks doesn't sound like "classic" CH . . . and we hope it's not.  . . . except for the eye part.  Our pain usually starts behind the eye, then into upper/lower sinuses . . . the really bad ones (for me) teeth . . . like the whole side of your face is having an "ice-cream headache" . . . and many/most (?) will have a ganglion (that right guys?) knot at the base of the neck on the affected side.

  On the OUCH website there is a schematic of the head and it's blood vessels . . . there's another somewhere that I've lost the link to (anyone have it . . . please post and I'll bookmark it again).  Note the path of the trigeminal nerve.  Beside the nerve run blood vessels . . . our attacks are caused by the dilation of those blood vessels which put pressure on the tri-nerve and cause our pain.  Therefore, our abortives are vaso-constrictors.

  We aren't doctors, though there is a great deal of recognized (by the medical community) material here for aid in helping you and your doc get you sorted out.  A correct diagnosis is a must . . . there are several headache types which can mimic some symptoms of CH which could be something more serious . . . I'd say most of us have had CTs & MRIs to rule out other causes . . .If it's CH, those tests will come back "normal".

   Start that journal.

    Be Safe,

      PFDANs


        Richard
Back to top
  

I can live with the beast as long as I don't have to "dance" with the bastard.
lastchantsranch  
IP Logged
 
boxcorner
CH.com Junior
**
Offline




Posts: 39
Re: Hello all. Glad to have found this site!
Reply #3 - Sep 20th, 2009 at 3:05am
 
RichardN wrote on Sep 19th, 2009 at 11:35pm:
  ... Our pain usually starts behind the eye, then into upper/lower sinuses . . . the really bad ones (for me) teeth . . . like the whole side of your face is having an "ice-cream headache" . . . and many/most (?) will have a ganglion (that right guys?) knot at the base of the neck on the affected side.
... Richard

In my case, the source of most intense pain seems to be high up at the  back of my nose, or sometimes high up at the back of the roof of my mouth.  It then spreads up behind my eye, encompassing my temple area and fans out, up into my head.

Usually, by the time I'm ready to have the entire left side of my head cleaved off, any pain in my jaw and teeth are  just a side show.  Grin  

The intensity of my headache seems to be directly proportional to the intensity of the pain high up in my nose.  Nasal spray vaso-constrictors sometimes reduce the intensity of my nasal pain, thus reducing the level of headche.

I haven't read about the 'ganglion knot' effect before, but I sometimes get soreness, or discomfort, in my neck under my ear/jaw, around the area of my carotid artery.  I have recently discovered that applying heat to that part of my neck seems to have the effect of taking the sharp piercing edge off the pain.

I guess we're all different.  For me, the breakthrough was getting a proper clinical diagnosis and being prescribed treatment, which hopefully will work.  Good luck with yours.  Smiley
Back to top
« Last Edit: Sep 20th, 2009 at 3:14am by boxcorner »  
 
IP Logged
 
mcallon
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: Hello all. Glad to have found this site!
Reply #4 - Sep 21st, 2009 at 10:16pm
 
Thanks for the thoughtful responses all. I have started the journal. My appointment with my GP is tomorrow, so we'll get the ball rolling.

In a strange way, part of me is hoping that it is CH, because anything else that is causing such pain is likely to be life threatening; though the pain of CH is surreal, at least there's no serious damage to the body.

God, what does that say about where I am right now that I am hoping for CH? I guess the recent bouts have me worried that something very wrong could be going on "up there." At any rate, I am going to try and get some rest and see what tomorrow brings.

I'll update after the visit.

Cheers until then.

Mike
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Hello all. Glad to have found this site!
Reply #5 - Sep 22nd, 2009 at 3:15am
 
Well praying it's nothing more sinister....remember the days before I was diagnosed I shared your worries. If it turns out to be CH, don't lose this site!!! Wink

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
mcallon
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: Hello all. Glad to have found this site!
Reply #6 - Sep 23rd, 2009 at 3:39pm
 
Hi all. Went to the doc, and everything looks okay so far (i.e. no tumor or problems with the eyes). I have to admit, though, the doc seemed a bit detached. I gave him all the info about the frequency and intensity of the headaches (most are moderate). He basically said that it's "possible" that my headaches are CHs, but I don't think I got a firm diagnosis. He said he lean more towards CH than migraine given my description of the problem. He suggested keeping a constant level ibuprofen in my system for several weeks and using imitrex pills for bad hits.

So, I still feel like I'm unsure whether or not I have CH. I seem to have the traits, though the severity of  most of my headaches is only what I would call moderately high.

Sigh...we'll see what the next few weeks bring. So far, I have only had two attacks per day, and they have been manageable.

Thanks again all.

Mike
Back to top
« Last Edit: Sep 23rd, 2009 at 3:41pm by mcallon »  
 
IP Logged
 
Lottie
CH.com Veteran
***
Offline




Posts: 112
Gender: female
Re: Hello all. Glad to have found this site!
Reply #7 - Sep 23rd, 2009 at 4:38pm
 
Good luck! I hope it works for you.

If it doesn't I would stop taking the ibuprofen (of course after you talk to your doc about it), because it can hurt your stomach, not to mention the risk of getting more headaches.

And perhaps talk about a preventative and O2? My doc told me that about the only headache problem that responds well to O2 is CH.

I think it couldn't hurt to try it...

Keep us posted on how you're doing!

Lottie  Smiley
Back to top
  
 
IP Logged
 
RichardN
CH.com Hall of Famer
*****
Offline




Posts: 963
x1|Crossville|USA,Tn
Gender: male
Re: Hello all. Glad to have found this site!
Reply #8 - Sep 25th, 2009 at 12:47am
 
Hi mcallon

  Glad you at least have a doc and he did give you an abortive (though not 02 . . . yet). When is your followup appt.?  If you indeed have CH, then a preventative might be in order . . . especially if you continue to have multiple daily/nightly attacks.

  I may have been confused by the description of your attack, "radiating down my scalp to the base of my neck" . . . I think I mistook that for going over the head and down . . . . any (rare) headache I get on top or back of head I know is not the beast.  Apology for my mis-interpretation . . . mainly, we want you to get a definitive diagnosis and help you with providing you and your doc with the info to get you more PF days as soon as possible.

  Have you identified any of your triggers?  For most of us, alcohol in any form is a trigger (major one for me . . quit 2/02) in cycle.
I'm chronic so had to give it (beer,wine,brandy)up.  Exhaust fumes, certain chemicals (like carb cleaner) some perfumes . . . try and identify as many as possible . . . gives you a chance of avoiding a few attacks.

  If you're episodic, hope this is going to be a short ride with the beast.

  One thing you can try right now is water therapy (see "water X 3" .. . . link on left).  It has been my preventative for 5 years . . . it's NOT easy to do . . . to consume that much everyday . . . nor does it mean you won't have attacks (starting one now . . . brb . . .DEAD in 6 min on 02 at Kip 4 !) . . . but you need an effective abortive for the attacks you do get.  The preventatives don't necessarily keep you from having attack, but (in my case with Verapamil), the reduced the frequency/intensity of the attacks . . .AND I had the 02 to deal with the beast when he shows up. 

  Keep reading . . . keep asking.

    Be Safe,

      PFDANs


        Richard
Back to top
  

I can live with the beast as long as I don't have to "dance" with the bastard.
lastchantsranch  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!