Yea, I'm up at 1:30am again!!  I have been through the ringer since last Feb, 08.  I have really been going through hell!!  I was diagnosed today with CH.  I am a 41yr old female with a husband and two kids.

I have been diagnosed with two different disorders.  Of course that is after several CTA's and MRIA's, two neurolgists, a cardiologist, a vascular surgeon, and a pain management specialist.  Whew.

One Neurologist and Cardiologist, along with the radiologist, say it's a Carotid Dissection.  The other Neurologist and vascular surgeon say they can't find anything and that it is CH.  Fortunately I am scheduled for a brain angiogram in two weeks so I should get the definitive answer.


Whatever this is, one way or another, I want it gone.  After reading some other posts I think I'll pray for the dissection.


If any of this sounds familiar please let me know how you deal with this kind of pain.

I have had excruciating pain for over 4 months now.  During the bad parts, about 5 times a day or more on the left side, it feels like someone stabbed me in the eye with an ice pick for about an hour or so.  I run around very anxious flopping from the couch to the bed holding my head in a vice because crying seems to exaserbate the eye.  During the "inbetween times" I still have a milder form of the headache.  It never truly goes away, except for the help I received from the pain management dr. and  I can't live on oxycodone and fentora forever!!!  My eyelid droops, I can't brush my hair (because the pain starts at my eye and runs over the top of my head), my eye gets bloodshot during the bad times, no focus or concentration, no sleep (cause it wakes me up EVERY night), and that general feeling of fatigue of battling this all day and night, every day.

The only reason I leave the house anymore is to make dr's. appts.  I'm scared to drive because if this headache hits while I'm driving I put everyone at risk.

I'm sorry if this message seems scattered, but the pain makes it difficult to concentrate on anything at the moment.

I really appreciate any help. :-/

I'm glad you found us and it sounds like you are getting some excellent care from some caring doctors, with that comes a word of warning. Most doctors know very very little about CH. It is now YOUR job to learn and assist them with your care. I've been battling them for almost 30 years, I find best results using a 2 pronged approach.

1: A good preventative medication, something you take on a daily basis while you are in cycle, (meaning while you are getting headaches) with the goal to substantially reduce both the frequency and the intensity of your headaches. I use 1200 mg a day of lithium, other popular prevents are verapamil and topomax, some have to combine the lithium and the topomax to get any results. There are many others you MUST read about on the board to run by your doctor.  At 1200 mg a day of lithium I block 80-90% of my attacks.

2: a good abortive. The headache is starting now what? Your first line abortive should be oxygen. Read the link on the left, print it out and take it to your doctor. It's safe, far easier on your body then narcotics, with none of the addictive side problems! I can abort an attack in as little as 6 minutes. the key points are:
Pure oxygen.
Using a NON RE BREATHER MASK.  re breathers and nasal canulas are worthless.
From a high flow regulator, at least 15 LPM. For it to work your lungs must get pure oxygen, nothing else.

Other great abortives are imitrex injectables and nasal sprays, pills are generally useless as our pain ramps up too quickly for them to get into our system.

For now, keep some energy drinks on hand, Rock Star, Monster etc..any containing the combo of caffeine and taurine. many can abort an attack by chugging one of these at the very onset of an attack. Strong coffee will often help with the shadows...what we call that dull pain that just seems to hang on.

Sorry for the long reply. You are hurting way too much and that's just unacceptable. become your own advocate, read like a mad woman and keep asking questions, we are all here for you. So glad you found us.

Guiseppi

Thank you soooo much for your help!!!  I am taking topamax right now.  Actually I have been taking it for a couple of years - for migraine headaches.  Maybe the lithium combo will work, I will definitely ask.  He did put me on oxygen today but the medical supply was closed before I could muster enough energy to pick it up.  I will definitely take your advice on the oxygen, thanks again.  I actually have found that massive amounts of caffeine help - strange?  Usually it's 3 excedrin chased by 2 cokes.  It seems to make them shorter, if I catch it in time.

How long do these bouts ususally last?  I am getting very depressed because I can't be a good mom anymore.  Everything seems to revolve around if I feel good enough.  I hate this!!!  Existing in a mercky cloud of fear isn't good.

Thank you so much for your support, it really helps knowing that someone understands.

The good news is everyone here understands.  [smiley=hug.gif]If the coffee and excedrin are somewhat effective, I'd strongly encourage you to try the energy drinks. The way the more learned brethren on this board put it, is the taurine super speeds the caffeine into your system. And not at all strange that caffeine helps, very common on the board.

How long do they last.........for the first 20 years my cycles were clockwork, spring and fall 8-12 weeks. I hit 40 and they went all over the board. I've had almost 2 year remissions followed by 8 month cycles. Don't dwell too much on "when they'll come back" or when they'll leave. Just leaves you weak and stressed.

I'm almost off work and heading for bed but people are around all night it seems, keep firing away with the questions.

Guiseppi

Thanks again for all your help, I REALLY appreciate your comments!!  I will definitely give the energy drinks a try.  I need some "wings" right now.  lol

My headaches seem to be worse at night, is that typical?  What I mean by worse is that they are more intense and longer lasting.

I don't have a schedule as of yet because they started in February and now it's July.  But they do tend to happen at the same time of day, the worst ones will happen at approximately 8pm, 11:30pm and about 2am.  It's like having a newborn baby the way my sleep is off.  lol

Thanks again

We're on the same schedule then.  I also have a few more thrown in during the morning.  Trying to figure out how to miss those.  Hope you find some relief.    

Try Melatonin at night (9-15 mg) for the night hits. This works for a lot of us.. They come in 3 and 5 mg tabs and you can get them almost anywhere. Most night hits occur about 1 1/2 hours after falling asleep during the REM sleep - the melatonin gets you thru this REM sleep.

Careful with the EXcedrin -- they're fine every once in a while, but taken too regularly will cause rebounds.

For goodness sakes get that O2 today and make sure you have the right regulator (15 liters per minute) and a non-rebreather mask (the kind with the little baggie on the bottom).

How much topamax are you taking? It's been my miracle drug since 99. I take the full dose at night and for the most part it works for me. (I take the dose at night because of the side effects - usually sleep them off and have never had problems that others seem to have). My maintenance dose is 100mg but during a high cycle (I'm chronic) I up the dose (have been up to 400 mg during a really bad time, but 300mg is my usual "high" dose).

Hopefully this cycle will end soon and you'll be back to normal for a while. Wishing you some PF vibes...

Hugs BD

Hi, I'm so sorry that you're hurting...

What comes to energy drinks, they work the best when you'll drink it as soon as the pain begins. I drink mine cold as ice, with ice cubes; others prefer them warmer. See what helps you. :)

Wishing you PF time asap,
Sanna

hi

so sorry to hear of the hell that you are going through with this. please don't be hard on yourself about your parenting skills at this difficult time. i was a single mom of 3 young kids when mine started, so i really do understand your feelings. i have missed some key occassions due to CH's, but my kids are very empathetic and understanding, as i am sure yours are/will be.
surviving an attack takes EVERYTHING you've got, so don't put extra pressure on yourself to be mom of the year. i just tried to enjoy every minute during the pain free hours.

best of luck to you!

I am new to the sight but not to the pain. I drink espresso quads oxygen like the others said and zomig.
doesn't  matter at this point find energy drinks or strong caffiene drink and gotta get oxygen 15 LPM with a non-rebreabther mask and don't let the medical supply or doctors say otherwise. know what you need. its the only thing that has saved my bacon. the meds have too but i love my oxygen,quad coffee and ch.com
karl

What they said. And welcome.
all the best
kick that demons ass
thebb

Unfortunately, there is no specific timetable for cycles.  I had 8-14 week cycles and then all of a sudden, I went on a 16 month+ cycle.  Since then Ive been out of cycle and I do admit to be frightened of the next one.

Good luck with your tests.