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.

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.

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

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

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!

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