Jaconor,

Which country are you in?

Perhaps someone from your country can tell you who you could call for support and help.

Hang in there.

That's just the insidious way of the beast.  Some nights he really kicks your a$$.  Others he lets you sleep a bit.  My cycles are all over the place too.

I've just gone through your posts and I don't see your treatment plan.  I'd love to help but need a bit more info.

Are you working with a Dr who knows CH?
Are you taking any preventative medications?
What are you doing to abort the attacks?

If you can take a minute and answer these questions we can offer some suggestions.

In the mean time, take a look at these links.

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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There are also non-medical options which can be found here:

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I keep my beast at bay with Verapamil which is a blood pressure medication.  It prevents about 90% of my attacks once I'm ramped up to the right dosage. 

What breaks through the preventative I quickly knock out with 100% Oxygen at 25lpm using a non-rebreather mask.  Occasionally that too will fail and I then turn to my last resort; imitrex injections.

The pain sucks and it can really derail your life.  But remember, it won't kill you.  There are options for treatment.  Quite a few of us eventually find something that works.  That magic combination may change from one cycle to the next but there are answers out there.

Good luck...

-Dennis-

I am responding to Dennis from Mass. about what I am taking right now...

I am taking Verapamil ER twice a day, 120 mg each tablet.  I take fiorcet for pain, although it has not helped recently, like all of last night.  i take lots of ibuprofen too, sometimes that deadens it a little, but not last night.

i use ice pads, stick my head in the freeze, take nicotine hits, whatever I can do. 

I have asked my GP to refer me to neuro.  I am waiting for the neuro's office to call me once they review my patient chart that my GP sent over.  It's been about a week now, but haven't heard from anyone yet.

I will call my GP first thing Monday to discuss oxygen.  can you tell me in the most simplest terms what I need. 

I've even tried Red Bull, b/c I've read it helps some of us, and it has helped some, but didn't have any last night to drink.

Last year, my doctor prescribed some Imitrex b/c I had read about it online somewhere, before I found you guys.  I only have two left right now.  It is the nasal spray.  Is it important to use up both for both nostrils as it says, or can I just use it on the side of the head that hurts? and have enough for 2 hits?

So sorry for being so long winded, but I didn't want to leave anything out.

One other thing...this is the first time that I've had my hits on the left side of my head...i've always had them on the right.  Has anyone ever experienced this?  I'm a worried person and this worries me b/c maybe it means i have a tumor or something.  I had an MRI last year and it was normal.  Perhaps the neuro will recommend another one.  Last night when I had my worst of the 3 or 4 headaches, i got this really blurry vision in my right eye.  It looks like a big black circle was covering my pupil.  It lasted for about 10 minutes or so.  I was scared I was going to stroke out or have an aneurysm (sp?).  I had to go wake up my husband to sit with me until it went away.  We have two small boys (5 and 3) and this is scaring me so, b/c I am a stay at home mom, and my 3 year old has developmental delay issues, and it's almost impossible for me to focus on him when i'm going through these damned headaches.

Thanks to all of you for your ears and support and for letting me just be miserable with you.  Any advice you all have, please share with me.  I am grateful to you all.

Peace and good karma.

Jaconor to answer your question, there have been others reporting that the CH's switch sides. I know there is   a thread on this somewhere, if I find it i'll update this message with the link for you.

Do read up on the 02 as there are specific ways to use it that make a difference. You will want to take the info with you to the neuro.

Here's the link I was thinking of. From March 8th under General Posts in case I mess this up.

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Welcome to the board, great advice already. The dose of verapamil you're on is quite low for CH. Some go as high as 960 mg a day to get relief. It is a powerful BP med so DO NOT increase it without your doctors assistance as it does require careful monitoring. But do mention to him that most need to go much higher to have any relief of CH.

Stay away from pain meds. They eat up your tummy, especially the ibuprofen, damages your organs and really doesn't touch the CH.

31 years of the beast and oxygen is still my first line and most effective abortive. The key to 02 working is getting on it as soon as you feel an attack coming on. Your lungs must get ONLY 02, no outside air, no exhaled air. That's why we use the non re breathers and high flow regulators. It's MUCH easier then it sounds. I can abort an attack in 6-8 minutes with 02. Definitely worth a shot. Hang in there, you're not alone anymore.

Joe

jaconor wrote on Mar 28^th, 2009 at 1:30pm:


Like Guiseppi said, that is a pretty low dose for CH.
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I would really push for the Oxygen.  It works wonders when used at a high enough flow rate with the right mask.

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Keep on them.  Don't wait for them to get back to you.  Call them every day.

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In case you couldn't see it the link to the left: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .  Everything you need to know is in there.  It takes some time to get through the info but you need to educate yourself.  I know that isn't easy especially when you are in pain.

Remember, you are your own best advocate.  The only way you'll get what you need is to understand what treatments are out there.  Then you need a Dr you can work with.  One will will read what you bring him.

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The side is not important.  The nasal spray will deliver Sumatriptan to your blood stream through either nostril.  Some folks really stuff up and can't use the spray on the affected side and it still works for them.

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No worries 

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Only a Dr/Neuro can give you the answers you need.  I've heard of rare instances where vision was affected though.  I truly hope clusters are your only problem.  Having little ones only complicates things.

Please let us know how you make out...

-Dennis-

jaconor wrote on Apr 1^st, 2009 at 1:25pm:

Yesssssssssss,  I just love success stories.

     Kinder gentler Potter

I keep the 02 tank rigged up by my bed when on cycle. Unfortunately I incorporate the CH into my dream and dream I've already started the 02. By the time I wake up it's already established. I can still abort with 02 but it'll take 15-20 minutes instead of the usual 6-10 Good luck!

Joe