I have been a member since 2004 but I haven't been active since then as I only seem to pop on to the site during cycle...simply to remind myself that people just like me actually do exist. If I had a nickle for every person who said to me "oh, I get migraines too" I would be a billionaire by now.  I know they mean well, but it's so frustrating (to say the least).  So, then I come here and read some posts and know that I am not as alone in this as I often feel.   

I am 35 yrs old and have had cluster headaches since I was 17 yrs old. I am currently in my 7th week of cycle and pray that the end is near.  Although, the hits are not suggesting that remission is on its way.  I get about 6 hits per night, almost every hour and a half I am awakened from the pain.  Last night alone I went through two full 02 tanks.  I am now sleeping on the couch every night b/c I can't take the guilt of waking my boyfriend up with every hit. 

I was on verapamil for 3 years, 2 of which were HA free, but the "beast" broke his way through and last year the cycles started again so I went off of the verapamil.  I am now med free, more so b/c I am so tired of polluting my body for no long term results.  I have been on and off prednisone for years and I love the way I feel when I'm on it.  The side effects have caught up with me though so I no longer use that either.  I have found that Zomig works really well as an abortive but I can't handle the side effects.  Every time I take it I feel like I'm going to have a heart attack and that scares the hell out of me.  I swear by my oxygen and it truly is a wonder abortive for me. This cycle has been so bad that I am considering trying out another preventative but I have no idea what way to go.

I try so hard to stay positive and remind myself that it will pass as it eventually always does.  One too many sleepless nights has caught up with me and now I just feel exhausted and frustrated.  The truth is, even after 18 yrs of CH's I'm still not use to them.  I truly hate that they are a part of my life.  Only a CH suffer can truly understand why these things have been coined "suicide headaches!"  But having gone through this so many times before I do know that there is light at the end of the tunnel.

Sorry for the not so positive post but I figure better here, where the people who read it actually understand it, rather then in my daily life where no one I know actually gets it...they all just look at me funny wondering why I always have an oxygen tank with me  :-?

Just a couple of thoughts from own experience:

I've found that I need a break from Verapmil every so often, or it does indeed stop working for me. I float between 240mg and 720mg as needed.

If I stop taking it for a few weeks, then go back at it - the effectiveness returns full blast. This has been a pattern for the last 10 years for me.

When I was using O2 at 10-15 lpm, I would easily go through a tank or more on bad day/night. When I changed to a 25 lpm regulator, I found that I could kill it in a very few minutes - plus the pain never got real bad. (I've since learned to hyper-ventilate with O2 at 45 lpm and I can kill 99% of my attacks in 3-4 minutes flat)

After about two weeks of forcing myself to breathe at that rate, I stopped getting re-attacks that came back 15-30 minutes after stopping the O2.

Some people are very happy using 8 lpm and 120mg of Verapamil. My silver bullet is using a higher amount of both of them.

Marc

I'm so sorry to hear about what you're going thru. In my post "I'M IN AGONY" I mentioned a few herbal remedies that help me prolong remission cycles. I'll copy them here in a sec.

"I use Liddell ScH Sinus Congestion and Headache with Echinacea Oral Spray, Redd Remedies Aromatherapy Inhaler, Redd Remedies Adult Sinus Support, Sinusin Homeopathic Nasal Spray, Yogi Tea Organic Cold Season Defense, Boiron Mezereum for Sinus Congestion and Solaray Devil's Claw Special Formula with Tumeric and Bromelain. All of these work to alleviate my headache symptoms and prolong remission periods for days, if not weeks. If I use the Liddell ScH Sinus Congestion and Headache with Echinacea Oral Spray, Redd Remedies Aromatherapy Inhaler, Sinusin Homeopathic Nasal Spray and Boiron Mezereum for Sinus Congestion at the first sign of facial pressure, the symptoms are alleviated within 5 - 15 minutes.

These only work during remission periods. Once an attack has started, they are ineffective."

I hope this helps you. ^_^

You also might try taking Melatonin at night before going to sleep. Sounds like you're getting hit during the REM sleep (about 90 minutes after you go to sleep). The melatonin helps you get thru that and has stopped the night hits for me. I take 12-15mg at night and am "usually" hit free at night. It's been working for about 5 or 6 years.

And listen to Marc on the O2. The high flow rate and hyperventalating does help abort quicker. I use a demand valve and abort in 3-5 minutes most of the time.

If I'm above a 5-6 when I get to the O2, I'll usually chug a can of Red Bull or a cup of coffee along with the O2.

But try the melatonin. It's OTC and you can get it at the grocery store or WalMart in the vitamin isle.

WIshing you PF days and nights.

Hugs BD :-*

BarbaraD wrote on Sep 23^rd, 2009 at 6:19am:

If I'm above a 5-6 when I get to the O2, I'll usually chug a can of Red Bull or a cup of coffee along with the O2. Hugs BD :-*

same here :)

Thanks so much to you all for the feedback.  I only got hit twice last night, 12:30AM & 2AM...and as you can imagine that was a great night for me!  :)

Barbara: I tried melatonin a couple of years ago & it only worked for about 3 nights for me but I was only taking 3mg so perhaps that's why. I will def try it again at 12-15mg and see what happens.  I also drink red bull, for me it helps only about half of the time.  I only drink sugar-free red bull does that make a difference in the effects?  Thank you for the suggestions.

Marc: As far as the 02 goes, that is great advice.  Currently, I do not have insurance & I think that I would need a new 02 script from my neuro to get a different regulator...is that correct?  My current regulator only goes up to 15 lpm as per my neuro's script.  My neuro costs around $300 just for the office visit so I will not be seeing her again until my insurance kicks in.  Anyway, would you or anyone else be able to tell me what exactly I will need the script to read in order for me to get the 02 regulator that you describe?

My nuero is convinced that 12 to 15 lpm is more then enough for CH's.  She was also convinced that 120mg of verapamil was the max dose that I should ever take...obviously she does not specialize in HA's.   ;D

Thanks again for the input!

Laurie

You have the script for 02 . . . don't bug the doc about it . . . just go on ebay and pick one out . . . not that expensive.  First, you might want to try the 02ptimask shown on the homepage.  I have one similar and that 3 litre bag makes a huge difference . . . so I get by with the 15 lpm reg with no problem . . . but MANY seem to swear by the even more efficient 25 lpm. reg.

Yes,  up the dosage on the Verapamil . . . try 9, then 12 . . . to get used to the grogginess you may have.  Have had breakthrough attacks which waked me and it took a minute to realize, "oh yeah, him again", and reach for my mask and tank valve.

I use water therapy (see "water X 3" . . . link on left) and have for five years now . . . it is NOT easy to do . . . but you might consider.

Keep reading, keep asking.

  Be Safe,   PFDANs

    Richard

Yes,  up the dosage on the Verapamil . . . try 9, then 12 . . . to get used to the grogginess you may have.  Have had breakthrough attacks which waked me and it took a minute to realize, "oh yeah, him again", and reach for my mask and tank valve.

I think Richard had a typo there! I'm sure what he meant was up the doseage of MELATONIN to 9 then 12 mg!  ;)  (Got your back Richard! :))

Joe