Hi turfman, sorry you are here. There is a ton of help and info here to help deal with the beast. Check out the o2 info to your left. IT WORKS!!

    Barry

I am back with a new cycle. I had the worst one ever last Friday...Felt like a electric transformer was in my head right behind my left eye.....

I had tried the riddlin factor and it broke the last cycle...

I had to stop taking it because of how much weight I lost...

So I just ate a imitrex and am ready for phaze 2 of finding a cure...

Hi All,

This is my first post.

I first remember getting clusters around the age of 28 (about 7 years ago).  The pain usually presents itself with severe sensitivity to all external senses, particularly light and noise.  Likewise, I seem to get nausea, but still tend to attribute that to the significant mucus flow into my stomach during a cluster.  The pains usually start in late afternoon and turn on and off through the night, however todays started about 10am, signaling a particularly bad day... I went home at noon.

Of course, in my early days with this condition I kept asking doctors about it and they kept telling me it was sinus (because of the congestion and seasonality of it).  The allergy drugs never seemed to work, but was usually able to get a little relief with sudafed and laying on my side with the effected side pointing up.  This certainly was no fix, but had lessened severity.

Finally, a few months ago, I came across an article about headaches and first read about clusters.  I went to my doctor and demanded that I see a headache specialist.  After he argued that it was just a sinus headache for another 5 minutes, he ceded and gave me the referral.  Last month, I finally saw my neurologist which diagnosed cluster, and gave me imitrex 100MG tabs (samples) for arrestors and verapamil for preventative.  I have just started my last cycle a couple of days ago (just after equinox) and am very impressed with the imitrex.  I haven't seen any relief with the verapamil, but I understand that takes a little time.

I have heard a lot about O2, but am reluctant because I travel a lot and cannot imagine lugging such an item onto planes  (is this even allowed)?

A couple of questions for the crowd:

1) Do people ever go into complete remission?  Or is this likely an issue I will deal with for life?

2) I have read through many of the boards, but haven't seen anything substantive about episodic becoming chronic from prescription drug use.  If there is sound evidence, can you please share?


Here is hoping for relief for us all!

Thanks for the information Guiseppi.

I tried a Maxalt today since I ran out of samples on the imitrex, and to my surprise it worked as well.

I will see how my first properly medicated cycle ends out and see about what is truly necessary for me.   In the past, my cycles have only lasted 1-2 weeks, so I may not need the verapimil anyway.

-Andy (AVN)

Hello. . .

I'm new to this board and would like to introduce myself.  My name is Shannon.

I don't get all the abbreviations so please don't expect me to post them.

I have had cluster headaches for about 6 years now.  At first I thought I had an abcessed tooth but the dentist told me to see a doctor.  Saw a doctor, had an MRI ( I already have an arachnoid cyst on my brain so am used to the MRI routine). They found polyps in my nose and sinus cavities so they put me on Vicodin for the pain.

When I moved to Las Vegas I found a new doctor who told me I have Trigeminal Neuralgia.  He, too, put me on Vicodin.

It doesn't hurt to brush my teeth, or any of the other symptoms of TN (wow, I used an abbreviation!).  It wasn't until I switched doctors, and he asked the RIGHT questions, that I found out I have cluster headaches.  And have for SIX FREAKING YEARS!  I did have a "remission," as I didn't have any for over a year.  Last week, however, they came back with a vengeance, which is why I'm here.

What in the hell helps this pain??????????????????

I don't have insurance so can't go to a neuro. . .

How did your mother in law hear about it???? It's awesome that the word is getting out to people like yourself. Welcome to the board, here's hoping we can help. Have you read the oxygen link on the left yet? Many find oxygen failed them because of HOW it was used. Might be worth a second shot.

When you get a chance tell us what your current preventative routine is, what, if anything, you take to reduce the frequency and intensity of your attacks, and what you take when a headache starts. Maybe you can teach us something, maybe we can point you in another direction. It's what this board is really all about.

Welcome, so glad someone pointed you to us, like it or not you're family now!!! ;

Guiseppi

You're 100% correct on narcotics, they are useless for the pain and pack waaaayyy  too many problems.

For 02 to really be effective, you must breathe 100% oxygen, no otside air, no re brethed air, you must use a NON RE BREATHER MASK or a DEMAND VALVE. You need a regulator that can provide up to 15 LPM or greater air flow. Most can abort in under 10 minutes using oxygen this way. I so hope it works for you.

You also might wanna look into verapamil as a prevent, either alone or in combo with lithium many have found success. If coffee helps definitely try the energy drinks that combine caffene with the taurine, many can abort using only that.

Guiseppi

Hi Christopher,

You should read through the Oxygen info on the OUCH-US site, print the info out and take it with you to the Dr.  If he perscribed nasal canula to you last time he'll probably need to see the research posted there to get the perscription right.  Good luck...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

-Dennis-

Hello my name is Christine, I am 39 years old and I live in the South of England. I was diagnosed with cluster headaches last wednesday.

On christmas day I accidentally sprayed myself in the face with perfume and a few hours later I was just sitting watching TV when I began to experience really severe pain in the roof of my mouth followed by burning in my right nostril then such severe pain behind my right eye it just crippled me.

Although the pain had taken me by surprise it was not unfamiliar to me, just this time I had no explaination for it apart from the perfume.The pain subsided after 20 /30 mins but during this time I thought my face was going to explode or at the very least I had been shot in the temple!

When the pain had gone I began to ask myself all the usual questions was it my teeth? It couldn't be I have no top teeth left! Maybe it was a blockage in my sinuses but my nose was running like a tap.

Over the next few days I experienced this maybe 5/6 times daily and by the time the New Year had arrived I knew that I needed to get to a doctor. I saw a doctor I had not seen before, and once I had explained what had happened to me I had 3 pages of paper put into my hand explaining all about cluster headaches.

Even then I could not see what had been staring me in the face for the last 21 years! An appointment was made for me on 16th January to see a specialist and I sat explaining to this guy what awful pain I have suffered with my sinuses over the years to which he responded he doubted i had ever suffered sinus pain and told me all about cluster headaches. He went on to tell me I was lucky by the time some people are diagnosed they have had all of their top teeth taken out, it was at this point I realized what had been happening to me.

I was 19 when i had my first tooth drilled, incidentally the tooth directly under my right temple and in November last year I had a orthodontic plate fitted to replace the teeth that I have had removed over the years whilst suffering such severe pain.

Once i had run out of teeth to blame the pain on, I went through every decongestant and sinus remedy I could buy although, I could never understand why nobody seemed to suffer sinus pain as badly as I did.

I have been told that I need an oxygen tank and also a nasal spray of which I don't remember the name but I am waiting for the doctor to hear from the specialist before I can have this medication.

As you can imagine I am very scared and just waiting for the pain to start, it seemed to have lessened to one bout of pain per day which has occurred late afternoon for the past 3 days but without any form of pain relief I would be interested in any suggestions.

hello

not sure what i am meant to do here but trying to get someone to talk to me?
husband today been diagnosed with ch and want to know if anyone else on oramorph?

doddy7 wrote on Feb 7^th, 2008 at 10:05am:


    It's morphine. Make ya loads of fun at parties but not good for ch.

                           potter

                       

KatzPurr wrote on Mar 25^th, 2008 at 8:08pm:


Excellent post KatzPurr, and well, welcome. No truer words than above.

Regards

Jon