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.

Hi Lucky and welcome,
You could start the vitamin D-3 remedy, it has lots of
us here cluster headache free. You can find all the info
here, or shoot Batch a PM, and he will guide you through.

Hoppy

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.

Their are folk that suffer from both migraine and CH's.
Where the Vitamin D Regiment has a good success
rate in treating CH's, it's not the same with migraine
headaches, so if what you have are CH's, then its
worth giving it a go.

Hoppy

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.

Hi Lucky

Getting a diagnosis from an experienced headache specialist is the first step in getting the right treatment for you. And with the medication you've been given, it will make a difference.

The Topomax will act as a preventive, cutting down how many CHs you get. People sometimes have problems with Topomax, especially as if can result in "brain fog". If this happens there are other options including verapamil and lithium.

Oxygen works amazingly well at killing off CHs. We've a page with everything you need to know about it - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

What form of imitrex have you go? Whilst for migraines the pill form can be pretty effective, with a CH it takes too long to take effect, so people use the injections or nasal spray to get faster relief.

Keep reading and ask any questions you can think of. People here either have CH or support someone with it, so we've collectively a lot of experience with living with CH.

Vitamin D3 is something we've found that works very well too as a preventive and it seems to work with both CH and migraine, but for some strange reason for many with both it only works with the CH (this includes me).

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.

Ok, here's my 2 cents.. I have CH and Migraines ... I took Topamax since 99 till a couple of years ago when my neuro switched me to zonagran (he said it worked the same as Topamax without the side effects). To keep the "dopey" stuff out of the way with the Topamax I took the whole dose at night and never had the dopey feeling that most people report with it (and I took up to 300 mg at times - maintenance dose was 100 mg).

In Oct 2013 I got on the D3 regimen and have not been hit with CH since. (it's wonderful to be Ch free for whatever time it lasts - I've been chronic since 97).

My neuro is putting his CH patients on the D3 regimen and is doing a happy dance over my remission (I've been his problem child for the past 20+ years).

I still take the zonagran (just in case), but swear by the D3. And I keep the O2 cylinder around (just in case). I have no illusions that I'm cured, but I have high hopes that the remission lasts a LONG LONG time.

Keep us up on how you're doing..  :-*