Welcome Jennifer!

Are you on Oxygen???  Check out the Oxygen link to the left.  Print out that info. and give it to your Doc.  Also Print out the page this link Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or will take you to and give it to your Doc as well.  This may help your doc help you.

What else did he give you for an abortive?

Here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion. 
** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.

Sending Pain Free Vibes your way!

Pills don't work for CH at least not as fast as we need them too.  He should have you on the Imitrex injections at least!!

You are welcome for the suggestions, I hope they help.

I have several attacks a day, very little relief time. I'm seeing a neurologist, not a headache specialist, I dont think we have those here in Ontario.
A lot of nights I am woken by the pain, I get up and usually pace around, sit outside and take deep breathes, trying to find some sort of relief.
I've always suffered from what they thought to be migraines, from when I was a young teenager, my neurologist feels that this was the begining of the cluster headaches, and that they have gotten worse over time.  He has just recently diagnosed me, its not that I've only had pain for 6 months.  All of my previous doctors always told me I was simply a migraine sufferer, even though these "migraines" would come on repeatedly throught out a day, repeated times a week, then suddenly disappear for weeks/months, only to reappear.  This is what has caused my dr to say I have CH.

I've already had the CT Scan and MRI done, a few times, they kept thinking they were missing something.  I've also had all kinds of bloodwork done, and they even sent me to therapy thinking it was stress, but the therapist felt I had no more stress then an average person, other then my head feeling like it was going to explode
I'm happy I've finally been diagnosed, I'm just wanting to get relief, and its hard when the meds are just starting out, and they are in the "testing" phase to see what works and what doesn't.
As you all know, we all just want a quick fix, and there isn't one.  I'm trying to manage, but its hard, I have nights where I dread going to sleep because I know full well I'll be up in pain shortly. 

Yeah, that description does sound a lot more like CH. There is a LOT you can do for CH, I've had them for 32 years and managed a 30 year career in law enforcement, a 28 year marriage...( so far ) and raised 2 beautiful daughters to adulthood. Takes some work on your part to educate yourself, and some work to educate your doctor. You have a couple of options, look at clusterbusters.com      they look at some "alternate" ways to treat CH, out of mainstream medicine. Their success rates are pretty impressive. Then there is the traditional medical regimen, which I chose...mostly because as a cop the other was not really an option!

A 2 pronged approach is what has worked best for me:

1: A good preventative medication, a med you take daily to reduce the number and intensity of your attacks, that's probably what your doc is attempting with the BP med, is it verapamil by chance? If so, most CH'ers go to a much higher dose then doc's are used to, to get relief. Some go as high as 960 mg a day to get relief. I use lithium when I'm on cycle, at 1200 mg a day it blocks 60-70% of my hits. Topomax also has a loyal following although many refer to it as dopey-max because of it's side effects, it can make you a little loopy.

2: An abortive regimen: the attack has started, now what? Read the oxygen info tab on the left side of the board. I can abort an attack, be completely pain free, in as little as 6-8 minutes using oxygen. It MUST be your first line abortive. DEMAND it from your doc, print out the info from the board and give it to your doc. It's cheap, effective, and no side effects.

Imitrex injectables work as fast as 02 does for me, bit it's expensive, I hate how it makes me feel, and I believe it may extend cycles. That being said I still use it when I get caught away from my oxygen. Imitrex nasal spray works for many, the pills take too long to absorb to work for most.

Energy drinks, rock star etc., any containing the combo of caffeine and taurine, chugged at the first sign of an attack they will abort or reduce an attack for many. If you are taking verapamil, limit the energy drinks, they interact badly with verapamil.

Start the following vitamin regimen: Calcium Citrate with VitaminD, Magnesium and Zinc, washed down with lemonade, up to 4X a day. Alters your arterial PH making you less succeptible to attacks.

None of these are "cures," all are part of a comprehensive attack on the beast to lessen the number and intensity of your attacks, and give you weapons for when the beast breaks thru.

Joe

Thank you everyone for all of your amazing advice and support!!  I am so happy that I found this site, it makes me feel so much better, knowing that I'm not alone in this battle.

I am going to print off some of this information and take it to my doctor, hopefully it will help him (and me for that matter).

I hope you all have a great weekend....I'm off to cheer for my sons hockey team in the Silverstick tournament

Sounds like he knows a bit about it, thats really good news. Some have found when verapamil alone didn't wor, combining it with lithium brought them relief. Good luck, it's roughest at the start.

Joe

Welcome.. Sounds like you get hit hard a night.I too was affraid to go to sleep at night. Until I tried Melatonin,you can buy it over the counter at any drug store. I take 10mg about an hour before bed and after three nights I have yet to get hit at night(3 months) Give it a try well worth the 8 bucks for 60 tablets. I also have chased away many HA's with chuging a red bull drink at the first sign of an attack.
Read the oxygen info link at the left..

Good Luck,and wishing you some relief soon.

Accupuncture and chirporactic fixes are helpful for the secondary issues of CH. The tight neck muscles, the damage we do to our back, neck, and shoulders while fighting against an attack. They don't seem to do anything for the actual CH mechanism.

Joe

Thanks, I was thinking of giving it a try, but its not covered by my insurance, and it costs a fortune, didn't want to waste my money on it.