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.

Morning Jaconor, Hang in there, it will pass.

Are you drinking enough 'Water'? Have a look at the 'waterx3', section on the left.

Also go to an open window and Breath, Deep slow breaths.

Others will be along soon i'm sure. Andrew.

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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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-

Jaconnor - is there someone in your life that "supports" you as you're going through this? I am one of many "supporters" of our loved ones with CH. We have an area on the board for us too. Just wanted to mention that.

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,

Sorry to hear ya going through this. But we do know your pain.

The only thing I would suggest to you for hopefully a temp fix is ask to switch to the imitrex injections. They  usually work withing 5 minutes. Grab the oxygen as well (click the yellow "oxygen info" to the left)

Demand to see a neuro ASAP. don't wait for them or you could wait forever.

Take Care

Chris

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.

 
Quote:

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

Jaconor,  Any Dr. with MD after thier name can precribe oxygen.  You don't have to wait to see a neuro for that.  In simple terms he will need to write the script for e-tanks with a regulator that goes to 15  lpm along with a non-rebreather mask.  You  then take the script to a medical supplier like "Apria" or "  "Lincare"  which are nationwide, to get it filled.

That was the simple version.  Here is a more complete version and you should really read and understand it so you can be educated when talking to the Doctor.  

    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Please feel free to ask any more questions you may have right here and we'll be happy to help.


Linda

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

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You might want to check around and get some Melatonin. It's a sleep aid that helps with night hits, it's a supplement. You can probably find it at a health food store, or even some supermarkets have it.

Hang in there!

The only other thing I can reccomend so you don't have to wait until Monday would be to possibly find  a 'minor care' treatment place type thing. Some hospitals have them, they might be able to prescribe you some imitrex injections or nasal spray until you can get to your GP.

I hope you get some relief soon.
PFDAN
Mystina

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. [smiley=hug.gif]

Joe

You got 02????  Life isn't so bad  ehen your big green tank of 02 is right next to you.  You'll be back to sleep in no time.  I spent years without o2 because I thought I was disabled if I had to use it.  What a fool I was.  Get it and life your life again

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

I am taking Verapamil ER twice a day, 120 mg each tablet.

Like Guiseppi said, that is a pretty low dose for CH.

Quote:

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 would really push for the Oxygen.  It works wonders when used at a high enough flow rate with the right mask.


Quote:

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.

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


Quote:

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

In case you couldn't see it the link to the left: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.  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.


Quote:

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?

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.


Quote:

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

No worries  8-)


Quote:

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.

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-

Hello everyone.  Thank you, thank you, thank you, to all of you who responded with your advice, reassurances and virtual hugs.  

Yesterday evening my O2 was delivered to me.  A really big tank (M), and I got 4 of the H tanks.  I have two non-rebreather masks.  Unfortunately, the big tank only has a regulator up to 8 LPM.  They are ordering more and I should be getting one next week.  However, the H's have the 15 LPM regulator.  I used it last night (wiped out one tank already), but not complaining b/c the oxygen company is right down the road.    

I do want to say that when you're asleep, and the beast wakes you up, you're not really catching it at the beginning stages are you?  I've been awake both times so far with using the O2, so I'm hoping that those times when I am asleep and wake up with one that it won't be too late with the O2.  Any thoughts or suggestions on that?

Again, thank you all so much.  My GP was more than happy to write out the script for me.  We also got me on Prednisone as a short term therapy to go along with the Verapamil.

I'll keep you all posted as to how the O2 works.  Peace to all.  I'm so glad you are out there!!!!

;D

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

Hello everyone.  Thank you, thank you, thank you, to all of you who responded with your advice, reassurances and virtual hugs.   Yesterday evening my O2 was delivered to me.  A really big tank (M), and I got 4 of the H tanks.  I have two non-rebreather masks.  Unfortunately, the big tank only has a regulator up to 8 LPM.  They are ordering more and I should be getting one next week.  However, the H's have the 15 LPM regulator.  I used it last night (wiped out one tank already), but not complaining b/c the oxygen company is right down the road.     I do want to say that when you're asleep, and the beast wakes you up, you're not really catching it at the beginning stages are you?  I've been awake both times so far with using the O2, so I'm hoping that those times when I am asleep and wake up with one that it won't be too late with the O2.  Any thoughts or suggestions on that? Again, thank you all so much.  My GP was more than happy to write out the script for me.  We also got me on Prednisone as a short term therapy to go along with the Verapamil. I'll keep you all posted as to how the O2 works.  Peace to all.  I'm so glad you are out there!!!! ;D

Yesssssssssss,  I just love success stories.

     Kinder gentler Potter

;D. Andrew.

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

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

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?

I've used the n/s extensively in the past but never recall anything about using one for each nostril.  HIGHLY recommended not to, ONE only per hit.  If needed, using ONE on the uncongested side is ok, save the other n/s for another time.





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

I do want to say that when you're asleep, and the beast wakes you up, you're not really catching it at the beginning stages are you?  I've been awake both times so far with using the O2, so I'm hoping that those times when I am asleep and wake up with one that it won't be too late with the O2.  Any thoughts or suggestions on that?

Having the oxygen set up and ready is great.  To help sometimes, I'll grab one of those cooler ice packs from the freezer and held by hand with a washcloth applied directly to my temple as it gets unbearable while beginning the oxygen breathing.  Keep breathing, in a short while it will begin to feel like it's stopped getting worse and will stay there for a bit, then begin to reverse with some receding of pain, you won't need the ice pack any longer but keep breathing until it's gone.  Nothing like it, whew!   :)  



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

We also got me on Prednisone as a short term therapy to go along with the Verapamil.

The pred will help greatly for awhile as it is tapered down, but did the doc say anything about increasing the verap during this time?  Usually a pred taper is used until a preventive med can be gradually increased to an effective level.  The 240mg per day didn't seem to help enough, if the doc had recommended increasing slowly, you may see if it is effective for you.  Preventatives help elude a lot of a cycle.    ;)