This past December/January I was hit with an excruciating headache above my left eye without warning. My ability to speak was affected - I was only able to get a few words out at a time and with some difficulty. I was rushed to the ER and treated for a stroke. It was later determined (while in ICU) I did not suffer from a stroke. Thank God!

The headaches continued multiple times a day, each lasting up to three hours, for about two weeks and then poof! they were gone. I saw specialists after, but they either said we couldn't determine anything unless I was experiencing the headaches at the time or they said my migraines (20 year sufferer) had altered. I swept it under the rug and moved on.

Then May 2015 I had my second episode. I had warning, although I didn't know it was a warning. I had allergy-like symptoms for about a week. I had blockage and watery eye on the left side, dizziness, and unexplainable excessive sweating. The episode lasted two and a half weeks, multiple headaches a day. The first one would start between 10:00 and 10:15 AM every day. I saw four or five doctors, but they just gave me drugs and sent me on my way.

I have seen a headache specialist twice so far. She was hoping it was migraines, but since I had them for almost twenty years, I knew these were absolutely not migraines. Apparently her husband suffers from chronic headaches, so she has a history with them and even became a specialist because of them. She started me on 50 MG Topomax twice a day and Imitrex (which I already take). I have a huge oxygen tank at my house, but it arrived after my episode ended. 

I have to admit, I'm feeling a little down.  I too was hoping this was something that could be treated or prevented. I'm relieved it isn't something that will kill me, but at the same time - I've never wished for death like I have during one of these headaches. I'm a single mom with a 15-year-old and a three-year-old who keep me positive, but right now I feel like my balloon just popped.

I'm not sure what to do now. I was basically told to take the Topomax and double it in November before my next episode is anticipated and come see her when the headaches come. I guess in the meantime I just live life and hope for the best? Any suggestions? Is there anything I can do to prepare?

Any advise is appreciated. I'm just thankful I have somewhere to write this really long winded diatribe. It seems like people hear I am diagnosed with headaches and roll their eyes and think I'm being a baby or a looking for attention.

G'day, Lucky, and while it's hard knowing for sure that it's cluster headaches, it's better than not knowing at all and flailing about in the dark.

It means you can now learn about it, look at all the options and make informed decisions, surrounded by people who know exactly what you're going through and understand.

If  your littlies would like to join us here we'll do our best to offer them support and good advice, too.

Welcome home.

Hi Lucky
The advice Hoppy and Brian have given you is spot on. And we all know what it's like to receive those eye rolls.

Keep hold of the oxygen - don't send it back because your episode has ended. You never know when you will need it again.

As for the children, watching a parent with CH can be very scary. Make them feel they are helping by giving them some tasks to do. I have a friend who's daughter rigs up the 02 tank, plumps up the cushions, makes the tea, administers the injection and phones her dad. She's been doing all this since the age of 4. She's not so scared if she feels she can do something to help.

As for the imitrex, if you don't already have them see if you can get the auto injections. They are fantastic and a million times more effective than the pills.

Also, seriously check out the vitamin D3 regime. It works for 80%.
Maz.

You're facing a different problem now. Several different treatments have been pitched at you, in additon to what you doc is giving.

Problem is: if you use any of the recommendations along with the doc's Rx, you'll get some help--but you won't know which of the different treatments is responsible. So whiclh one do you continue to use?

If you are going to work with a good doc, you can't work not tell him/her what you are considering, or want to try. Self-interest says you must be open with the doc.