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Jason@ITSportsNet
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Diagnosed with CH, but seems more like PH?
« on: May 18th, 2004, 10:48am »
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Hi fellow sufferers...I didn't realize how many other people suffered from this condition.  I have never heard of Cluster Headaches before!
 
Mine started just last week.  I was watching TV with my family and I felt this weird pain in my neck...felt like my lymph node was going to explode.  The pain radiated to my jaw and face on my left side up to my temple.  It was excruciating.  That night I was woken up by this pain every two hours.  I had to get out of bed and pace around until it stopped.  Of course, I had a lousy sleep.  The next morning I decided to go to a walk-in clinic to see what could be wrong with my face.  I explained my symptoms to the doc and he thought it was tooth decay.  I do have a sensitive lower molar so it was a plausible theory.  He prescribed a heavy dose of Penicillin and told me to get my tooth checked.
 
Fortunately, my girlfriend is a dental assistant and got me in that day.  I've always had good teeth so I wasn't expecting to find decay.  X-rays showed no decay anywhere or any cavities.  The dentist thought that I might have severe bruxism which might be causing the pain in my jaw.  I had my splint adjusted and tried to wear it that night, but it was too uncomfortable.  I actually had 4 hours of sleep without an attack.
 
It was now the weekend and my mysterious pain had changed.  It was no longer in the front of my neck and jaw.  It had moved to the base of my skull and now it felt like an icepick was being rammed up through my esophagus.  It was less painful than the first pain, but still agonizing.  I got more sleep over the weekend, but by Sunday night, the pain changed back to my face...only with more intensity.  This time it attacked me every hour and lasted about 10-15 minutes at full intensity, then tapered off to a mild throbbing for another 10-15, after which I'd try to sleep again.  These attacks nearly had me in tears.  I like to think I can handle pain, but whatever this was had me crawling on the floor begging for mercy.  I can see why they call this the 'suicide disease'.
 
I finally got in to see my GP.  I told him the symptoms and he told me right away that I was suffering from cluster headaches.  He prescribed me prednisone and these $14 pills called Maxalt to help with severe attacks.  The prednisone kept my up all night and the attacks were still pretty regular, but were lighter in intensity.  It's now Tuesday morning and I've had one painful attack.  I can't take the Maxalt for another 12 hours or so or I'll be exceeding the maximum dosage.
 
After reading some of the discussions, I'm wondering if I'm suffering from Paroxysmal Hemicrania (sp?) due to the frequency and shorter duration of the attacks.  Episodes rarely last more than 20 minutes, but I usually can't go more than an hour or two without having one.  I guess I'll see how the prednisone works.  If it doesn't help, then I'll call my GP and see if I should try the endomethacin.
 
I'd appreciate anyone's input and suggestions.  Thanks for listening.
 
Cheers,
 
Jason
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Re: Diagnosed with CH, but seems more like PH?
« Reply #1 on: May 18th, 2004, 12:02pm »
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Hi Jason,
 
I certainly hope it is Paroxysmal Hemicrania rather than clusters because usually it can be treated with indomethacin with a high rate of success.   Why not have your doctor try this drug and see what happens.  I believe it has about a 95% success rate with Paroxysmal Hemicrania.
 
Good luck,
 
John
 
See this link:
 
http://www.ninds.nih.gov/health_and_medical/disorders/paroxysmal_hemicra nia.htm
 
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Re: Diagnosed with CH, but seems more like PH?
« Reply #2 on: May 18th, 2004, 12:40pm »
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Thanks for the reply Giovanni.  I checked out that site and my condition does seem more like PH rather than clusters because my attacks are very brief.  I have never had an attack last more than 30 minutes and I have the dull pain/aching in between occurrences.  I'll see if I can get another appt with my GP to get a Rx for indomethacin.  Oww...just got hammered with another attack.  Can coffee trigger these things??  I feel like my teeth are on fire.
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Re: Diagnosed with CH, but seems more like PH?
« Reply #3 on: May 18th, 2004, 6:10pm »
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Hopefully it is ph and indo will help. But during my cycles I get hit up to 20 times a day with headaches that last sometimes a little as 5 min's. I have cluster's and no ph... I'm in the minority from what I can tell, but just fyi, it is possible for clusters to behave like this.
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Re: Diagnosed with CH, but seems more like PH?
« Reply #4 on: May 18th, 2004, 7:55pm »
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Hi Jason,
 
Many people with clusters will use coffee particially as an abortive.  It constricts the blood vessels and helps relieve the headache to many.
 
John
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Re: Diagnosed with CH, but seems more like PH?
« Reply #5 on: May 19th, 2004, 1:44am »
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I went back to my GP this afternoon hoping to get some other options for relief.  I was hit with another crushing attack on my way to the doctor and on the way home.  I suggested that I might have Paroxysmal Hemicrania, but he had ruled that out in the first visit because I didn't respond to 600mg Advil at all.  Indomethicin is just a more powerful anti-inflammatory, so if I had PH, then the Advil would have at least taken the edge off.  He's certain I have a form of cluster headaches that have a frequency and duration more typical of PH sufferers.  My attacks are short and number in the 12-15 a day.  I guess nobody is really the same when it comes to this kind of thing.
 
Thanks for the coffee tip, Giovanni.  I know coffee helps migraine sufferers.  My girlfriend gets migraines often due to a neck injury and will sometimes have a coffee to relieve the pounding in her head.  The caffeine keeps her up though, so it's only if it gets unbearable.  I've never had a migraine so I don't know how it compares to a cluster headache.
 
My GP gave me a syringe of lidocaine, which is used to freeze your gums at the dentist.  He talked to his friend who is a neurologist and he suggested this alternate therapy to help with severe attacks.  I basically squirt a few drops into my left nostril and it numbs the nerve that runs along that side of my face.  It actually has been working quite well.  Except the first time I did it, I squeezed too hard and fired several mls past my nostril and into my throat.  Never had my esophagus go numb before...quite the odd feeling.
 
I had a good workout tonight with seemed to help with the attacks.  I haven't had a bad one in several hours.  I'm hoping to get a good night's sleep, but I'm not holding my breath.
 
Thanks again for the feedback.  I'm learning a lot about CHs.
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Re: Diagnosed with CH, but seems more like PH?
« Reply #6 on: May 19th, 2004, 2:15am »
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You need to go see a neuro that specializes in headaches.
Motrin isn't going to do shit against cph or ch no matter what relation it has to indomethacin.
Like I said before it is possible to have ch that behave like this but you should have it ruled out by a good neuro just in case.
And although lidocain is used in the treatment of ch, it is far from being the most successful or most prescribed abortive.
Have you tried oxygen?
It is by far the most widely used, successful and loved abortive that we know of.
I guess it doesn't work for everyone, but if you use it right I'd say about %95 of us get great relief from it.
Imitrex injections are wonderful for big bad headaches.
And there's a whole host of drugs that have alot of success as preventatives.
In this wonderful world of ch, $14 for a pill is not relatively expensive at all... But pills don't work very well. Especially if your getting hit quickly. Imitrex shots are the way to go. Wink
 
What is the schedule for your prednisone?
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Re: Diagnosed with CH, but seems more like PH?
« Reply #7 on: May 19th, 2004, 6:26am »
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Imitrex injections will abort an attack (with me) in less than 5 minutes.  O2 is a great abortive usually used at a high flow rate in a non-rebreather mask.  I still would try indomethacin to rule out Paroxysmal Hemicrania.  This drug is cheap and a non steriod anti inflammatory.  
 
You really do need a neurologist who specializes in "headaches".
 
For cluster headaches, I personally used the following treatment to completely avoid the cycle I should be in now:
  www.clusterbusters.com
 
Also, look up the old links here to melatonin.
 
 
best of luck,
 
John
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Re: Diagnosed with CH, but seems more like PH?
« Reply #8 on: May 19th, 2004, 10:05am »
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I actually slept about 6 hours straight without an attack, so I might be making some progress.  I didn't even need to take a Maxalt wafer.  I did drop some lidocaine into my nostril (properly this time) which worked really well!  I went about 9 hours without an attack.  First one since then happened at 8am this morning.
 
Chris, my GP prescribed me the following:
 
- 75mg prednisone for next three days, then cut back to 50mg until Monday.  Then taper off one pill every other day, skipping days between until the pills are gone.
- for heavy attacks, Maxalt wafers which dissolve instantly and act within 5-10 minutes.
- 2% Lidocaine solution
 
I'm to go see him later this week to see how things are going.  He said we could try the Indomethacin if the prednisone doesn't work.
 
Thanks again guys...hope you have a pain free day.
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Re: Diagnosed with CH, but seems more like PH?
« Reply #9 on: May 19th, 2004, 11:29am »
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Hi Jason, welcome.  Fellow Calgarian here - my husband is a clusterhead.  Tonight's the NIGHT, right?  Go Flames!!  Cheesy
 
So, who's your doc?  Have you been able to visit the Foothills Headache Clinic, Dr. Becker's team - they really do know their stuff there.  worth a shot to try to get your GP to refer you there.
 
Just so you know, we also have a Canadian cluster site - link is at the bottom.  So far, I'm the only Calgarian there - so please feel free to join us.  The Flames have made $50 for OUCH Canada, because we do also have some Vancouverites there. Wink  C'mon over!
 
No way, Jose!!
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Re: Diagnosed with CH, but seems more like PH?
« Reply #10 on: May 19th, 2004, 11:44am »
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Hey Margi!  Nice to see another Flames Fever victim!  I'm so pumped about tonight.  I think they'll get out of their home game losing streak and finish of the Sharks just like Detroit.  It's going to be mayhem in the city tonight!
 
Thanks for the link for the Canadian site.  I'll check it out.  Also, if this treatment isn't working, then I'll have my GP refer me to Dr. Becker's team.  
 
How is your husband doing with his CH?  Has he found something that works?
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Re: Diagnosed with CH, but seems more like PH?
« Reply #11 on: May 19th, 2004, 12:35pm »
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Hi Jason, yes Mike is a classic clusterhead and he goes to battle every two years.  The weapons he uses are oxygen, imitrex inhalers and verapamil.  His last cycle just ended in March after 5 months.  
 
Mike goes to Dr. Eloff at the Headache Clinic and she's wonderful.  She actually took him in without a referral - they're one of the few places that realize that clusterheads are urgent care cases.
 
And, yes - I hope (with every fibre of my being) that our city goes nuts tonight.  We don't live far from 17th Avenue - the red mile - (we're in Glendale Meadows, S.W.)so I hope we are kept awake again tonight by horns honking.  Smiley  It was about 3 a.m. the other night when they finally stopped.  You wont' see me complaining though!!  Lotsa bleary-eyed Calgarians these days with big, stupid smiles on our faces!!
 
Should be interesting to see how Harvey retaliates to the Sharks' mascot's "fish got your tongue" shot on Monday.  Smiley  I wonder if Cherry will wear his Commodore wig again.  
 
GO FLAMES GO!!  (this has become a common ending to conversations here these days - kind of like "Amen".)
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Re: Diagnosed with CH, but seems more like PH?
« Reply #12 on: May 20th, 2004, 1:06am »
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GO FLAMES GO!!
 
The Calgary Flames down the San Jose Sharks in 6 games with a 3-1 win tonight at the dome.  What a game!  First Stanley Cup Final appearance in 15 years.  Calgary has a reason to celebrate tonight!
 
Too bad I'm having bloody CH attacks tonight.  I think I might have found a trigger....dairy products.  We went to Dairy Queen tonight and I had a Blizzard.  About 10 minutes later, I got hit with probably a 9 or 10 on the Kip Scale.  I was literally crying and wanting to smash my own head in with a hammer.  It lasted a good 30 minutes, then went down to a dull ache.  Really wished I had some oxygen handy.  I also had my protein shake before bed and was hit immediately with another attack, but less severe.  Seems that some foods can bring on an attack.
 
Does anyone find some foods trigger attacks?
 
I was looking forward to a good rest tonight, but I might be in for some walks with the beast tonight.  At least the Flames won...the beast can't wipe that smile off my face!
« Last Edit: May 20th, 2004, 1:11am by Jason@ITSportsNet » IP Logged

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Re: Diagnosed with CH, but seems more like PH?
« Reply #13 on: May 20th, 2004, 9:59am »
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Margi, I think I'm going to ask for a referral to Dr. Becker or Dr. Eloff at the Headache Clinic.
 
I had a really bad night.  Got 4 hours of sleep, then woke up in pain...not excruciating, but enough to prevent me from going back to sleep.  There sure is crap on for TV at 4 am!
 
I squirted lidocaine into my nostril, but it doesn't help much and seems to be losing it's effect.  I got ready for work at 6am and had another attack driving my daughter to daycare.  I took my Maxalt wafer because it was getting intolerable...this was about 15 minutes ago and I've gotten no relief.  It's getting worse to a point that I'm almost on my knees.  I'm trying Dr Becker's office right now hoping they'll see me today.  I don't know how people cope with this for extended periods of time.
 
It's impossible for me to work during an attack.  It's a good thing I have awesome bosses that let me come and go as necessary.
 
Oh man...this really sucks...
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Re: Diagnosed with CH, but seems more like PH?
« Reply #14 on: May 20th, 2004, 10:36am »
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hang in there, Jason - I'm sorry to hear that you've had a rough night.  I pray that you can get into the Headache Clinic and that they will let you try indomethacin.  It sounds like PH to me, too.  Irene is the nurse for Drs. Becker and Eloff.  Don't take no for an answer if they try to put you on a waiting list.  At the VERY least, push hard on your GP to let you try indo - he/she can prescribe it too.  
 
Let me know how it goes, ok?  
 
Go Flames Go.  Go Canada Go!!
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Re: Diagnosed with CH, but seems more like PH?
« Reply #15 on: May 20th, 2004, 9:40pm »
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Thanks, Margi...
 
Today was the worst yet.  My attack lasted from about 7 until 1pm peaking at about 8:30.  
 
I got into a neurologist office for Dr Wilson.  He seemed nice, but couldn't quite pinpoint what my problem was.  He thinks it's one of three things:  PH, CH, or TN. I have meds for all three and I'm trying the indomethacin first.  I'm still on prednisone as well.  He did load me up with Imitrex inhalers and Maxalt wafers, so that was good.  I also got an Rx for Tegretol in case I have TN.  I'm to follow up with him on Tuesday or Saturday if things haven't improved.
 
The Imitrex inhaler worked ok...but I've had this dull painful throb in my lower jaw centered right on my rear molar.  It almost feels like I need a root canal, but my dentist couldn't detect any decay or cavities...really weird.
 
I'm hoping to get some rest tonight because I'm absolutely exhausted.  Thanks so much for your support.  The thought of having to deal with this for the rest of my life is extremely daunting.  I guess you deal with whatever comes along as best you can.  At least it's not terminal.
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Re: Diagnosed with CH, but seems more like PH?
« Reply #16 on: May 21st, 2004, 11:12am »
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Wow, Jason - that's quite a med mix!  It's a really bad idea to mix triptans (imitrex and maxalt) so be very careful there.  We have one lady here who actually had a heart attack from mixing triptans!  
 
I did some checking for you and you're playing with fire if you take all of those meds at the same time.  Check it out:
 
http://www.drugstore.com/pharmacy/drugchecker/interactions.asp?drugs=Imi trex+Nasal%7C112175%3BPrednisone%7C103216%3BTegretol%7C100516%3BIndomethacin%7C101997%3BMaxalt-Mlt%7C113588&patientdrugs=&x=95&y=8
 
You can, however, safely take gravol (with any of those drugs) (generic Travel Tabs, available from Shoppers Drug Mart, Safeway, Coop, London Drugs) without prescription.   Gravol can get you through the night without getting wakened by pain.  It doesn't let you get into REM sleep which is when clusters hit - I'm not sure if that's the same for PH.  You shouldn't take it for more than a few days in a row because you DO need REM sleep, but it might give you a couple of nights' sleep.
 
Are you going to start a taper off the prednisone soon?  That's nasty stuff.   Sad
 
Were you in a high level of pain from 7 a.m. to 8:30 p.m.?  That's not typical of cluster at all.  Migraine can last that long and you can certainly have jaw pain with migraine.  Did the doctor even consider giving you oxygen?  Oxygen can help both migraine and cluster and I'm not sure about PH or TN.  But it's one of the safest abortives out there for head pain.  I've even had it help sinus headache!
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Re: Diagnosed with CH, but seems more like PH?
« Reply #17 on: May 21st, 2004, 12:48pm »
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Hi Margi,
 
Thanks for the link...quite useful to know what to avoid.  I went to my neurologist and he did ask me when I took the Maxalt, which was about 6 hours prior.  He thought it was safe enough to take the nasal Imitrex that once.  
 
I'm actually feeling like a million bucks right now!  I started the Indomethacin last night, but I'm still on the prednisone..I'm going to start tapering the dosage tonight.
 
I think I'm responding best to the Indocid!  I slept a full 7 hours last night and woke up with only a dull ache in my face.  I took another Indocid when I woke up and now I have no pain or sensitivity in my jaw or teeth at all!  I'm going on 24 hours without a major attack, so I'm quite a happy guy right now.  Let's just hope this keeps up.
 
I'm not going to take the Imitrex with the Maxalt anymore after reading what it can do to you!  I felt completely fine after taking those only 6 hours apart.
 
It seems like I may have PH instead of CH, but the pain in my teeth and jaw is mysterious...almost like a nerve problem like TN.  We'll see what happens.
 
Have a great long weekend!
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Re: Diagnosed with CH, but seems more like PH?
« Reply #18 on: May 22nd, 2004, 4:14pm »
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It may be a little late, but it would've been best to take the indocin before or after the prednisone. Pred stopped my headaches the first day I started it. So now you're not really gonna be sure wether it's the pred or the indo...
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Re: Diagnosed with CH, but seems more like PH?
« Reply #19 on: May 25th, 2004, 2:24pm »
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I actually stopped taking prednisone on Friday.  I probably should've continued with it, but I had been taking 75mg a day for four days without relief.
 
Now I've gone almost 5 days without an attack and I feel great.  I still have the odd dull throb in my jaw, but that could be from the stupid nightguard I'm wearing.  
 
I think it's pretty safe to assume that it is PH that I have and not CH (knock on wood!).  I feel bad for those who cannot find complete relief like I have.  Hopefully everyone has ruled out the possibility of PH by trying Indomethacin.  
 
We'll see what happens in the next few weeks.  I hope I never experience this pain again!
 
Thanks for everyone's support and I'll keep in touch.
 
GO FLAMES GO!!
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Re: Diagnosed with CH, but seems more like PH?
« Reply #20 on: May 25th, 2004, 3:40pm »
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so glad to hear you've found your answer, Jason!!  It's nice to hear our theories proved out here - that indocin CAN rule out cluster and diagnose PH.  
 
Thanks for letting us know.
 
Go Flames Go!  Cheesy
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Re: Diagnosed with CH, but seems more like PH?
« Reply #21 on: Jun 7th, 2004, 9:39am »
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My worst fear has come true.  My attacks came back on Saturday night after having a few beers.  I'd been drinking over a 4 or 5 hour time frame and didn't have anything happen until I got home after the hockey game.  
 
Now it's worse than ever.  I've gone 15 hours straight on a roller coaster of pain and dull throbbing.  I haven't slept a wink and none of my meds are helping.  I took a Maxalt, on Saturday night, and an Imitrex inhaler yesterday afternoon.  My indomethacin does jack now.  I gotta get back into the neurologist today because I need this to stop.  I'm a single dad and can't function this way and take care of my daughter.
 
I pray to God there is an answer for this....maybe it's not PH anymore.  Maybe Trigeminal Neuralgia?  AAAARRRGHHHHHHH
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Re: Diagnosed with CH, but seems more like PH?
« Reply #22 on: Jun 7th, 2004, 1:15pm »
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so sorry to hear this, Jason.  Please do call your doc today and get in to see a neuro!
 
GFG - tonight's the night!!
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Re: Diagnosed with CH, but seems more like PH?
« Reply #23 on: Jun 7th, 2004, 2:25pm »
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Once you start taking Prednisone you should NOT abruptly stop taking this medicine or it could lead to some serious problems. Prednisone lowers your immune system and you need the 'tapering' time to rebuild it.
 
IMHO ... 1 'cycle' is NOT clusterheadaches. (if it goes away and comes back in a few months/years ... then maybe CH). Also...12-15 attacks a day is unusual for a clusterhead.
 
Hope you don't have CH
Goodluck
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Re: Diagnosed with CH, but seems more like PH?
« Reply #24 on: Jun 7th, 2004, 5:58pm »
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on Jun 7th, 2004, 2:25pm, UN_SOLVED wrote:
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IMHO ... 1 'cycle' is NOT clusterheadaches. (if it goes away and comes back in a few months/years ... then maybe CH Unsolved

 
I beg to differ my friend, but that is your opinion right?
 
* edit.... Jason as Margi said please call your doctor, hope you ger relief soon!
« Last Edit: Jun 7th, 2004, 5:58pm by broomhilda » IP Logged

Suck it up Princess...

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