Newbie needing help!

[kaylanicole]

Wasn't diagnosed with ch til 2 years ago, but can remember having "migraines" growing up. Ironically I have also had sleep problems... basically I could sleep for insane amounts of time and anywhere, any position, etc. I was finally also diagnosed with "idiopathic hypersomnia." I went 1 year of having ch everyday... had to quit my job, school, everything! then Dec 21, 2008 I went off all meds and was "cured" for about a year. It is now Jan 24, 2010 and they are back... slowly returning to the horrid extreme that I thought had ruined my life. During the 1 year off period I didn't require as much sleep, no meds (for the first time in my life), and was not depressed at all. Now I can't wake up... I feel like I'm in a constant fog.. having memory problems (especially short-term), can't focus. Wake up with a terrible headache and then do okay for 3 hours before it returns! I am so upset... I am working and in school full time for Nursing. I need to be able to get through the day and I'm afraid this is going to ruin another entire year. I haven't been to my neuro dr in over a year so now to get back in I need a referral and the 1st appointment is like 3 months away. Any help?!?!?!
kayla nicole

[SandyV]

Hi Kayla, first things first don't worry! You CAN effectively manage ch and continue school and work.

I'm Jen, a 25 year episodic clusterhead. There are a number of things you can do to lessen the severity and duration of the hits. When you go to your neuro, tell him you want a script for oxygen- MINIMUM 15 lpm with a NON-REBREATHER mask. Start the o2 at the very onset of a hit and it will stop it in as little as 5 minutes. You might want to try to call him/her and see if you can get a script before your appt. If your neuro is familiar with treating ch, he may prescribe before your appt.
You can also try drinking a redbull or strong coffee - many people say that helps them abort a hit.

For sleep issues, you can try melatonin. You can get that OTC and I think the dosage is 12 mg. If I'm wrong, someone will be along later to correct me. That will help regulate your sleep and clusterheads who get hit during the night say this helps stop them. (I don't have night hits anymore so I'm not familiar with this)

Try ice packs, or heat- whichever works for you - on the affected side. I'm an ice user as heat will make mine worse.

The most important thing is to remember that you LIVE YOUR LIFE between hits. CH won't kill you and it doesn't have to rule you. The cycle ends. Having this sux!! but when you put more emphasis on the pain than on the painfree time, then you're letting the beast win. Don't let this consume you- that's easy to do.

make a headache diary: log the times you get hit, the duration, the severity. This will help your neuro in determining the best way to treat you with a preventive med. As I said, o2 is probably the best abortive- inexpensive, no side effects and works damn fast!

I know its scary, but it doesn't have to be. We're all here to help you through this and if you have questions or just need to vent, we are here. Hang in there, sister!

[Jen]

Hi Kayla and

I'm Jen and I'm a supporter to my husband Phil.

SandyV gave you some great advice to tide you over until you get to see your neuro.

Like she said we're here to help so if you have any questions please feel free to ask and we will do our best to help.

[kaylanicole]

Thank you both!!! Never knew about the Oxygen , but will try. I tried Melatonin, but it makes me sleep 4 hours then I'm wide awake... Luckily I don't usually have night hits. Doing okay the last couple of days. I really appreciate the support... my husband does not really understand and a lot of times it's frustrating to us both. He only has sinus headaches maybe 2 times a year (which I am very thankful.. I wouldn't wish this on anyone).

Thanks again!

[Jen]

Your welcome Kayla.

Yes to check into the O2...it's cost effective and it works. Don't forget about trying the energy drinks as well.

I know your husband's feelings all too well. I used to get very frustrated with Phil until I educated myself about what he was going through. A lot of times as a supporter it's tough to sit and watch the one you love suffer so and not be able to do anything about it.

Hang in there. You'll both make it through this and we are here to help

[Skyhawk5]

Welcome to the site Kayla, you have been given some good advice already. One thing I would like to point out is, YOU must take charge of your treatment for CH. Waiting for a Dr. to fix you will only lead to long waiting. Educate yourself about CH and the most modern treatments and relate this to you Dr.s. That will help speed the process.

Finding a Doc or Nuero that understands CH is sometimes a problem, and another reason to educate yourself. Any Doc that knows much about treating CH should know about Oxygen (O2) and other abortives and prevntatives. If not you will have to educate them. Don't let them give you the O2 with the nasal canula (nose tubes), it must be a NON-REBREATHER mask (the mask with a bag).

Good Luck, Don

[SandyV]

It might also help your hubby to get on here and meet some other supporters. Please let him know that he is welcome here just as you are, and we'll help him to deal with it too.

[Jen]

Very true about getting your hubby here for support as well. I'd be lost without all of my friends here...they have gotten me through some really dark days.