Hello to all the other CH sufferers, It's hell and I'm holding your hands as we go through this together.

I currently live in East Prospect, PA which is just outside Red Lion in York County. I have suffered for about 2 years now. I got my first taste of hell one evening after being woken up from a dead sleep to find my left eye in intense stabbing pain, swollen eye lid, running left eye and a stuffy left nostril. I honestly thought my eye was bleeding and I was having some sort of an aneurysm. I ran into the bathroom to find my eye was only tearing. A few minutes later the pain become debilitating and I was brought into the ER by my girlfriend who was also concerned, this was new to us both. The doc at the ER sent me to a neuroligist, who in turn sent me to my family doctor a few days later.
I described the pain to my doc who told me it was cluster migraines and did not give me any advice on how to deal with them.

I went about 2 months after the first incident having about one a week. I then went into a remission of sorts and haven't had one for a little over a year.

Here I am now pain free for a little over a year and they've started again. The first one wasn't bad but I knew exactly what it was and took 4 excedrine extra strength (I know, a bit of an overdose) pain went away about 30 minutes later. The next pain day was 3 days later, I was in debiliting pain yet again and had call off work, the headache lasted about an hour. My mother suffers from migraines and has a script for Imitrex which I stole one... Oh glorious drug, why did the doctor not give me a script for you? Pain was knocked out cold in a matter of minutes.

I've had them for the past 3 weeks now where excedrine works well (again standard overdose myself on 4 pills) and if not, the imitrex does the trick.

However, today is Wednesday night, I am at work and I developed a headache on my way into work, this is the sixth straight day I've had them. Thankfully as I write this, my 4 excedrine is beginning to work, 3 hours later my pain is starting to subside.

It is in the same eye, same symptoms, everything. I haven't found any set trigger to it. I do smoke and I do socially drink. One night I can go out and have a few drinks and get a ride home and be pain free for a few days. Other times I go out and finish half a bottle of beer and be in hard pain within minutes. That is the closest I've found to a trigger for my CH's though it seems more of a roulette wheel than a set trigger.

I feel your pain my friends and there is my story.

Hope to learn, help and be a part of the prison we all live in.

BTW, I have not tried this O2 therapy I've read on this site yet, I work in the EMS field and have access (in fact in my med bag in the trunk of my car) to O2 bottles, non-rebreather masks and even nasal cannula's. I will have to try this highflow O2 treatment next CH I get and hope I'll come to worship this gas as much as I do that triangular pill known as Imitrex.

73's to all the hams out there,
and may your days be pain free soon,

Jeremy -KB3DLP-

I was diagnosed by my family doc, but again gave me to preventative measures or any attack busters to take, or advice for the CH's. MRI and CAT was done while I was at the ER as the ER doc thought the same, maybe an aneurysm. They even gave me a spinal tap thinking maybe, just maybe it was Menangitus (sp?). Everything was negative and nothing was out of the ordinary according to the ER Doc.

I have seen another doc for a physical for my EMS job and I decided while I was there, I'd talk to him of the cluster headaches. He took my symptoms and also told me he believes they are cluster headaches as well, yet again offered me no remedy. Then again I was there for a physical for work.

Unfortunately I switched my full time job so now I'm waiting on my insurance to kick back in so that I may go and talk with a doc again as they've been much more frequent this cycle than my first cycle. Everyday for a week is hell, thankfully it is only once a day *knocks on wood* so far.

Jeremy

Just curiosity...why " Innocent Hate"  as a screen name?

East Prospect, PA.  If you're looking for a good doctor who knows what she's talking about, then you're not too far from me.

Look up Dr. Marcia Ribeiro at the Mid Atlantic Headache Institute.  She's difficult to get in to see, but if you tell her you're having cluster attacks, she might rearrange her schedule to see you.

She gave me a ton of info, and worked with me to decide on the best course of action.  She was also able to get me started on some helpful medications the same day I contacted her office.  The website is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I hope you get some PF days soon.

Hi Jeremy!  Welcome to the nut house.

While waiting for your Insurance to kick in and an appointment with a Dr you would do well to educate yourself on the treatment options available to you.  The best weapon in this fight is knowledge.

While O2 and Imitrex injections are great at aborting attacks, they don't prevent them from coming on in the first place.  For that you need a preventative medication.  

Preventatives are not without their own set of problems and some Doctors think they can cause cluster symptoms to become worse in the long run possibly causing some to become chronic.  In the end some folks decide to go with abortives only.  However you would do well to read up and then work with your Dr to make an informed decision.

Here are links to some good outlines on treatment to get you started.

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

Info on an alternative to Pharmaceuticals can be found here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Don't forget to join OUCH-US: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Read everything, search the discussions and then ask any questions you still have.  Good luck...

-Dennis-

Wow, where to start. Ok:

Why Innocent Hate? Not sure really, it's a SN I've used for a few years now. It was a toss up on my display name, Innocent Hate or my ham call sign. I figured this one fit more. I like to think I'm innocent and don't deserve this hell, therefore I hate them haha that's about my best reasoning I guess.

Lighty37> Thank you for that link, I will have to attempt to see her. In fact it's tabbed in firefox now to look at after this reply

ClusterChuck> haha thanks for the welcome I have tried the red bull energy drink thing in the past. In fact after reading some posts here and other places, I've realized that during my PF year or so I was all but addicted to Monster energy drinks. I kicked them due to the sugar content and over-all bad feeling they began to give me. Here we are a few months later and the hell as returned. Might have to start them up again hah.

BarbaraD> Yes, excellent advise. I was in fact on my way to my security job (yea two jobs, stress prolly doesn't help lol), when again I felt the shadow of death creep in. I pulled over on the highway and went into my med bag in my trunk, pulled out my O2 bottle and opened one of my NRB masks (Non-rebreather) put it on, at 15 liters and continued my drive. Had the tank in the passenger seat next to me, sucking in the O2. Shadow went away and it is now 4 hours later and still no attack. GOD BLESS OXYGEN! Sadly I kind of wish I would have waited for the attack to put the O2 on to see how well it would abort, but hell I'll take not getting one any day especially while driving.

DennisM> Clusterbusters actually gave me more of an idea. I had known of LSD and psylocibin being used recreationaly, with the users reporting pain free and even using them for headaches and other pains they may have. I have even read studies on XTC pills being looked at as a possible cure to migraines with a lot of study being done, and has been done on the pills it seems they're proving it could kill migraines quite effectively. I work EMS and I am not above trying anything to rid myself of this hell. I have even tried weed a few times when my attacks first came about, only to learn the hard way it made the attacks worse. If it wasn't for random testing at both of my jobs I'd look into the psyliocibin treatment as the dosage they state doesn't even compare to recreation use I pick people up for on the ambulance that are all tripped out. Thank you as well though for the advice, links and what not More information to add to my arsenal without a doubt.

Brew> Yep, I am well aware of the effects of Asprin on the GI Tract, Advil on the kidneys and Tylenol on the liver. Unfortunately until I found this great site I had nothing to go on and had to do trial and error. My trial was excedrine, and an advil/tylenol cocktail when I would have an attack. The last thing I thought of when being tortured was to care about the other organs I'd be putting through an equal hell. I just wanted out of my misery much like all of us


I am working on the water, water, water method of preventing as we speak. I'd just like to state my hatred for water hah but if it works, the lack of taste is better than banging my head on my wall. Or as I seem to be prone to doing, kicking and thrashing.

Thanks again guys Not so glad to be here (rather be pain free) but glad I found this place.

Jeremy

Oh and Melatonin at night before bedtime. It will help you thru the REM sleep (when Mr. Demon likes to come a-knocking). Give you some rest from those night-time hits.

Glad the O2 worked. Get to it early - better to avoid a hit than to wait... Heck I hit it if I feel a twinge...

And about the REd Bull -- they make it sugar free now (and there are some others out there that are cheaper and they come in sugar free also - I buy Chic and it's not that bad if you drink it FAST!)

Hugs BD