hello everyone.  I'm Zen.  I posted a comment a few weeks back in the thread for "finding doc in NZ".  I've gone to my local gp, and unfortunately the only option he had was to send me to the headache clinic at Auckland Hospital.  I've been through their system for an unrelated issue, but I know that it will take at-least a month to get in.

  I have been suffering from chronic headache/fatigue since I was 15 years old and I have only just moved to nz  from the states.  I have had every medical blood/mri/ct/etc scan that the neurologists had with only a little success with meds. 

The only one that works is amitryptaline(sp?) and I'm on the highest dose possible.  I'm interested in trying to abort my headaches with oxygen but I need to find a doctor who will at-least let me try that technique.  Can anyone provide me with a reference? Thanks!

Zenica

Welme to the board Zenica, sounds like you've got a plate full. Grab onto Mike's coattails and follow his lead, he's a good man and he knows his stuff!

Joe

Glad you're ready to go after some relief again Zen, yeah screw the 'just learning to live with it', that is not necessary!

And not that the medical community is the only place to find relief.

Here's a Newsweek article about a cluster headache preventative that is actually more effective than anything the doctors have: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And there's LOTS of other stuff that doesn't require a prescription. Check this topic out about a high dose vitamin D3 regimen and CH: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Yep got it Mike.
Bejeeber,  I found that article awhile ago and that was actually quite close to what i've personally dealt with.  Its a constant argument over "is it a CH, does it fit the 'guidelines'" etc.  Mine was never really called what it is because they could'nt figure it out.

I have a lot of classic symptoms, like the droopy eyelid and runny nose,  I have the sharp stabbing in the eye, usually the left.  My stomach gets upset but I never get sick and I can't deal with light...

I also have a problem that differs from any diagnosis.  I've been living with constant, but fluctuating high and low pain since I was 15.  It spikes bad after 5pm and slows to a numb roar at 10:00pm.  Then it wakes me up around 2 or 3am again. It never completely goes away.  The docs can't find anything wrong with me. 

My current GP believes that people with "migraines" can have other headaches too so he uses this as an excuse to ignore the "constant". My old doc in the states just said that once someone has had super severe pain for long enough it can create an imprinted memory in the nerves and then those nerves get confused and constantly fire when nothing is wrong.

On a side note: I have actually broken my nose and the bone above my eye but those were recent and the pain started before them.  I can't recall any head injuries when I was 15 though.

I've got quite an interesting spin off the traditional diagnosis.  Family history of migraines, and a relative (great grandparent) who had my exact symptoms but she never found the cure. She had the same ramping up and constant pain without any real cause and eventually died of a stroke in her old age....

I'm not willing to wait until I'm in my eighties to figure out what is wrong.  I've learned things she never knew, such as how atmospheric pressure tends to take the pain away (scuba diver). High altitude creates terrible waves of pain that literally make me shake until I cry.

If you saw me on the side of the road you would never know that I suffer from that kind of pain.  I'm like her in that way... I'm strong enough to deal with it, but that doesn't mean I want to and she prayed each day that her pain would leave her too.

Zen

wimsey,

I just got a few cans of red bull to try after Mike mentioned their benefits.  I have tried Melatonin, but I found that it really wasn't strong enough to help me sleep.  Sleep disorders run around like mad at my house.  Mine are mostly caused by the headaches that wake me up around 4am.  I take a prescription sleeping pill (actually half of one) when I go to sleep.

I believe I had Imitrex in the states and had some worry about heart skipping beats and racing so I stopped it.  Zomig had no effect at all and I'm really allergic to Migranal.

I will probably try the routine that was posted about the effects of taurine, magnesium, calcium and vit B2.

Zen

Well thanks for the redbull idea Mike.  When I first tried it I thought i would be sick from the taste.  Now that I'm used to the "smarties" candy taste I actually enjoy the effects that it gives.  I have since browsed for sales and found that the "mother" brand has 1200 mgs of taurine and it was 4 cans for $5.  its got a higher rate technically because its a bigger can but I was mostly looking for red bull substitutes that are affordable.

I don't have o2 yet.  I did hand off two reports (one about CH and the other o2) to my gp last week.  I had to switch the appointment from last friday to this one.  I want to see if he'll refer me to a neuro.

Zen

Mike,

got mine at silvia park - at pac n save.  Look in the refrigerator section not in the soda aisle.  it should be right next to the apple juice.  The ones in the soda aisle are not priced that way but in the fridge section they are individual and have that great price.  I bought extra.

Zen

Hey guys,

another update.  I saw my gp yesterday and went over some of the medical journals that I had given to him the week before.  It surprised me that he actually took the time to read them and also to do his own research.  During the appt, I discussed getting a referral to Kiri Brickell (Neuro) and possible treatment options that I had found.  Although he didn't see enough research in Batch's Vitamin regimen he did see a reason to try O2.  He did eventually write me a script for it, but warned of the "inconvenience" of carrying a tank and all that.   I told him that my kip 7-9s hit around 5:00pm and then first thing in the morning usually 5:45-6:00am.

In the end I got the script,  went to BOC and got a D tank,  Regulator, but they didn't have the right mask.  They had a regular one and I taped up the holes.  It did not come with a bag at all.

I'm planning on ordering a proper mask from here.  I tried the o2 out last night when the beast decided to show itself.  I had it on 15/lpm for 8 minutes.  I started feeling it work about 4 minutes into it.  No pain after and I slept great several hours later.  I did not wake up with a kip.

This being the first attempt I'm not going to say that its a certain treatment, but further tests will give a better idea.

Mike,  I sent you an email yesterday too.  Let me know if there is something nearby that has the bag.  It will take a few weeks to get the order for the mask here so I'm looking for a quick option.

Zen

Thanks for the advice joe.  I'll try that technique with the mask I have now.  I think all I'd have to do is cut the hose a foot or so below the mask and stick one end in the bag at the bottom and the other in the top with tape to seal.

I also found a NZ online site that has a bag for $10nz that will work while I wait for the one from CH.

Zen

Yep, I do.

and correction : when I said that the web had a bag, I meant the whole kit, mask bag etc for $10NZ.  would be kind of silly to pay that for a bag alone.

It's different for each person. I get the shakey feeling, the sweats start, the tension starts building in my neck and the pain starts building. About 4-6 minutes into the 02, I feel the tide starting to turn and the pain is going down, at 6-10 minutes I get this intense euphoric feeling and I'm pain free.

I'm so damned excited for you i could cry. Welcome to the miracle of oxygen!

Joe

Great news, Zenica. No one knows that rush of amazement and relief that comes when something as simple as pure O2 not only helps to manage the pain, but actually aborts the sucker. But we do.  I pray you will continue to find relief and learn more and new ways to battle the beast. Blessings. lance

Good work Batch!

Zenica

For a silly over the counter vitamin and mineral regimen, it's taking the board by storm! More great news Zenica, stories like yours are why DJ started this board! Hoping it continues.

Joe