Trying to drive whilst having a CH isn't a great idea, be careful!

Also oxygen is most effective when you start on it as soon as possible after the CH starts, so the delay in driving to hospital and then getting to the point where you get the oxygen will be enough to make it a lot less effective than it can be.

Do everything you can to get your own oxygen so you can get on it quickly. You'll just love the difference it makes.

Instead of coffee do try using energy drinks with caffeine and taurine, like Red Bull or Monster. They can be even more effective than just coffee. I've cans stashed in various places like the car, by the bed, in the lounge just in case...

Verapamil at 240mg is a very low dose for CH with many needing 360-480mg and some over 1000mg. However there is the balance between the impact on blood pressure, possible side effect on the PR interval (why you'll get ECGs done when using it) and the benefits on your CHs.

Thanks for the update on the "falling asleep". That really sounds quite different to what most people have so do try to get an update on it from your neuro.

Hi Jen and the CH family.  I am not new to CH's (25 years now), but I am new to your site.  Since I am in my 50's and haven't had a bout in 12 years, I thought I was out of the woods.  Well, 9 weeks ago I had a rude awakening when they returned.  This time they're different.  In the past 25 years, they have always been on the right side, this time they're on the left.  Only thing I can figure is that I had surgery on the left side 3 years ago opening up that side of my sinuses.  This is now my sixth round with CH, with the last round lasting 13 weeks.  Last night I had two CH's back to back, with only a 1/2 hour of relief between them.  That is if you want to call the immediate time after a CH relief......  Anyway, I just wanted to say hello to everyone and I will be checking in regularly to see how everyone is coping.  Maybe pick up on some pointers and share some of the things that help me.  Although, not that much, other than time.   

My doctor finally put me on O2 and Sumatriptan.  The O2 is great, if I catch the CH early.  If not, the Suma works in about 15 minutes.  Beats the heck out of having to ride it out for 1-3 hours.  I do have a question about the Suma.  My doctor put me on a prescription of only one shot a day.  Does me no good if I get 3 bad ones in a day.  He said Suma can cause heart attacks.  I haven't found anything that backs up that statement.  I'm sure he rights, but was wondering what other CH sufferers knew about Suma and just how safe it is to take more than once a day?  Just seems odd that now that I found something that works, I can only use it on one headache a day.  I get 3 regularly.  Thanks!!!  Cheesy

Hello
I'm a newbie.Where and how do I go about making a post to introduce myself to the gang?
ES

Go back to the getting to know you board, on the upper right you'll see a box that says "start new topic" click that and let us know a bit about you. Welcome to the board!

joe

So glad you found us Gemma, start reading everything on this board, ask any questions you might have. Did the doc set you up with a decent prevent med like Verapamil, Topomax or Lithium? Some decent abortives, hopefully oxygen and imitrex injectables? Let us know a bit about your treatment regimen maybe we can make some suggestions to take back to the doc.

JOe

We're damned glad you found us, here's your basic crash course on surviving CH!:

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days. The regimen also seems to help migrainers so it might help with BOTH of your issues.

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

aurl wrote,
I would place an ice pack on my forehead, at the back of my neck and sometimes all over my head. When the ice melted and it still hurt I'd do the whole damn routine agin, from the top. And if I had to, I’d do it until finally peace would come.

Hi aurl,
Worked for me, 15-20min  was on his way.

Hoppy.

I just wanted to say hello to everyone on this site and than you for being here. Hope I'm making sense cause I am going on my 5th or 6 th week of clusters. Anyway, thanks for bein here. Catch ya later.
Kathy

G'day Kathy Sue, and welcome. Sing out if we can help at all but we're ever here for you anyway.

Cheers always,

Brian.

I am a newbie. This is my first post. I found this site 4 days ago and it has changed my world. My CH started 5 years ago and are progressively getting worse. My first was a hangover from red wine. A year later the 3 am beast headaches started if I drank bourbon. All alchohol induced. Now if I get no triggerat all I still get 3 am headaches twice a week. Pain on right base of nose and above right eyebrow. An almost continual background headache. I waited 3 months for my neurologist appointment and she put me on cymbolta and I take oxycodine for the midnight rides. She told me I had nerve damage in face from having my nasal turbulates removed 10 years ago for chronic sinusitis (yellow drainage- not CH) so I believe I have been misdiagnosed. I have terrible headaches that have a tenuious grip at first. If I drink lot so water I can abort a beast. I found I had headaches if i got dehydrated and if I felt one coming on like a flickering light bulb and that guzzling a huge glass of water stopped it. If I chew anything the pain instantly goes away, I have only seen one instance of this I your forum but it is an incredible godsend. During midnight attacks I chew 10 packs of gum until the pain pill kicks in and dulls but nots stops the pain. I get over heated like my chest is a heating element so I put a separate air conditioner In my man cave where I set the AC to 67 degrees. My wife ran me out of the bedroom and  banned me to the man cave for freezing the house and wanting my pitiful face messaged every night. Here is one symptom I have not seen on any other patient ( maybe it's is nerve damage?..) Since the symptoms got real bad this year I have had super smell capability. This doesn't seem to fit CH. I meet a person and can smell what they ate. I can walk into a room and smell the carpet and a persons aftershave at the same time. My wife flops in the bed and I can smell if she had a glass of wine. And food tastes incredible and I want to got to French restaurants for their complex sauces. I used to walk in the room smelling like gasoline and not know it. This is a new thing for me and very odd. Yesterday, I went deep sea fishing out of nags head and had a headache coming on. It was raining with black skies and high seas.  I had just read on this website that monster drinks with taurine stopped the beast (thank you, thank you, thank you! ) so I guzzled two 16 ounce monster drinks. Instantly I went from a flickering 5 to a almost gone 1 so I was ecstatic. But the big waves with the full stomach of caffeine food crap soon made me throw up but I didn't care. As I sat back down in my seat wiping my face and smiling to have aborted a headache, the old timer on the boat taps my shoulder and goes "you know, you drinking those caffeine drinks are what are making you throw up." And I said "me drinking those caffeine drink are what stopped my headache!" and I grinned at him happy to the core, but he only cocked his head sideways stared at me in puzzlement. Only a CH suffered could understand this story.