Hi everyone:
I just wanted to let everyone know how I was doing from my original post in early July.  My medication regime is 12 mg. melatonin, 600 mg. lithium and 2 Frova per day.  I also am using Oxygen, per various people's suggestions....and it works most of the time.  The lithium, melatonin and Frova aren't keeping them away, but there are days that I have PF days.  However, this past weekend was a killer.  I had what I believe to be migraine headaches that would turn into CH.  And, with the migraines, I was sick to my stomach and throwing up to the point where I had the dry heaves.  Imitrex shots were the only thing that helped the CHs....I couldn't do O2 as I would get more sick to my stomach.  Then a front went through and things got all better.  Anyone else make a connection with weather / CH??  I haven't in previous bouts.  Oh, and I no longer get CH during the night, just during the day.  This also is something new.  Went to my PCP for my annual physical and, of course, he had no answer.  My neurologist will basically let me do whatever I want as I know more about things than he does.  However, I didn't know about the Frova and that seems to be helping.  Another unusual thing going on with me is several days I have had a pain in the back of the neck (right side) that moves up to the top of my head.  It almost seems like a muscle ache, but Advil won't touch it.  O2 won't touch it, either.  I had it pretty bad last night and then took my Frova and it was gone in 20 minutes.

Thanks to everyone for all of their suggestions.  I hope to be able to help someone else in the future.  If not, I am donating my head to science when I die.  I have CH, migraines, epilepsy, RLS.....something has to be connected there.....

Cathy Jo

Hello,

I (and a few others here) find that they are affected by the weather and changes in pressure - I really feel it when thunder and lightning are approaching.

For me, it seems to be that just when you get used to a cycle/pattern, it changes. Mine started as daytime hits and now it's mostly nighttime/morning ones. In 6 months, it could be different again.  

Everyone with CH seems to have different experiences with it. It sounds like you've got a good relationship with your doc there, so keep reading and finding out more.

I get sick too with the o2, but have found that having a really cold drink has helped.

During a hit, I find that coffee/energy drinks and ice-packs on the area of pain/back of the neck helps.

Keep us updated with your regime.

Welcome aboard!

Em

Thanks Em!  I will try the cold drink....I'm assuming you drink it before doing the O2?  I've tried ice, didn't help.  I wish the cold drink could be a beer!!!
Cathy Jo

Me too Cathy!!

I've given up the booze all together as it just isn't worth it.

I have the drink to hand and sip on it throughout. I try to breathe deeply and take small sips at regular intervals. If I gulp the drink down before hand, it makes me feel even more sick!

Some people find heat works in the same way as cold. Anything is worth a go!!

I've been saying for years that the barometer is a trigger for me... I'm a better predictor of the weather than the guy on TV.  :)

We're all different and what works for some of us doesn't necessarily work for others. Heat/cold has been up for discussion a number of times. Me, I put ice packs on my neck, but I soak my head in HOT water before (shower). I can't stand heat except for the hot shower on my head. Crazy, but that helps.

As to the energy drinks, I can't stand the "fizz' so I've taken Linda Howell's advice and opened one to let the fizz out and have it handy in the fridge to chug when I need it. Really goes down easier.  Drink it with the O2.

I suffer with arthritic migraines also, but the O2 helps them also as does the energy drinks. I keep phenergan handy for the naseau. Naproxin will usually take care of the migraine, but doesn't do anything for the CH - my problem is figuring out which kind of headache I'm having before it gets full blown.

Best advice I can give you is to READ READ READ everything you can here and learn from the experience of others. We've got 100's of years of experience here and feel free to ask questions. Everyone in Clusterville is willing to help and we DO understand how you feel and what you're going thru.

Hugs BD

Thanks for the advice.  I have been PF for 5 days in a row now!!!  HOORAY!!  I think the Melatonin, lithium and frova combination is working. Took a few weeks.  I think I am being too impatient with how fast drugs should kick in and work for you.   O2 now works for me, as well, in most cases.  There were some cases it did not, but I think I waited too long and the CH was up near a Kip7 or 8.  If I get it when it's just started.....O2 works great.  I'm also getting occasional migraines and it works for those as well, so I don't have to take an Imitrex pill.  Again, as long as I get it early enough and don't wait until it is a full blown migraine.

Again, thanks for all of the advice and help.  I keep reading up on stuff, as does my husband.  Everytime I run into someone and am telling them about my CH, I advise them to go to this website as it is the best.  I even told my PCP to investigate it, as well as tell any patients he has to go to it.

Cathy Jo

Welcome to the nut house, so glad to hear you're regimen is starting to work. I use lithium as my prevent and it takes about 2 weeks before it has any prevent affect. I do a 2 week prednisone taper to protect me while I wait for the lithium to kick in.

Starting the 02 early has been the key for me, and many others on the board. I have to resist the urge to deny it's a CH coming on!!! A wait of even a few minutes can make a huge difference in how effective the 02 is in aborting the attack. I've never had the nausea issue with the 02, I'll defer to Emily and Barb's advice on that. Interesting that it's girls having that issue, might be an interesting thread to pursue based on gender??

Glad to hear you're getting some pain free time, it's nice to not have to sit and shake in fear of an attack you're helpless against! ;)

Guiseppi

Hey Cathy-

glad to see you are getting some pf time.  One thing I read concerns me -  Are you taking 2 frova and an immitrex pill in the same day?  If so, be very very cautious mixing triptans-  result could be deadly! Just be careful- we need you around!

Also- Frova is great-  I took that daily for a week while in high cycle to get me over the hump- kept the headaches at bay.  Couldn't take it as an abortive though as they take about 2-3 hours to kick in- I used it more as a preventative.  Kept me painfree for at least 24 hours till next dose.  


Welcome and glad you are doing better !

Kelly

No, I am not taking Frova and Imitrex together.  My neuro made that very clear NOT to do.  I haven't used any Imitrex pills, just the shots.  Haven't had to use one in over a week.  And I know I need to wait 2 hours before taking a Frova.  As a preventative, I take one Frova at 5:30 and then again with my Melatonin at 9 pm.  All of that with the Lithium seems to work.  Then I have the O2 just in case and some Imitrex shots for the rare occasion the  O2 doesn't work.  

Thanks for the concern.....my neuro will "stretch the envelope" with certain meds (i.e., not using both Frova and Imitrex shots) but did let me know about taking them within a certain time frame.  He listens to me and tells me what will work and what won't.  I also have epilepsy, so many of the meds that others have found useful, I can't take as they will interact with my anti-seizure meds.  And, I definitely don't want a seizure on top of the CH!!

Cathy Jo