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

Hi Zen

I had a few fun and games getting hold of oxygen here in NZ. I wrote all about it in this topic - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The key thing is to get a medical person to write a letter that oxygen is required for the treatment of cluster headaches. Once you've got that, BOC can supply you with oxygen, plus a regulator and mask (although the CH.com one is a LOT better).

You can then work on getting oxygen via your local hospital's respiratory service. This takes a bit of effort, but it is possible. I get mine via CMDHB (Middlemoor).

Where abouts in NZ are you? Here in Auckland I can suggest a good neuro (Kiri Brickell) who is based in Auckland (ADHB).

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

Hi Joe and Mike,

Thanks for responding.  I am finally ready to continue with the medical community.  When every answer was blank, I still knew that I wasn't lying about it.  That pain may not have a cure, but that doesn't mean that its not real... thats the problem I encountered in the states... I'm sure you both have experienced the same thing.  I eventually got so burnt by "not knowing" that I really just stopped dealing with the docs and just learned to live with my condition.  Its been a long time and I'm glad that, as I am looking to try again, there are people who can help.

Zenica

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Zenica - check your email. I've sent you a load of NZ info and plenty of CH related reading.

Joe - I've learnt about CH from being able to learn from some great people who post here.

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

Zen, please keep us posted on your experience with O2-getting it, and its effectiveness for you. You don't mention other abortives: Red Bull, Melatonin, Imitrex, Zomig, Migranal, etc?  Tried these? In conjunction with your Dr's advice, I mean. Blessings. lance

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

It's so unfortunate when the run of abortives are not available to us because we cannot tolerate them...sigh. Still, good plan on the rest. Best of luck and well wishes. And blessings! lance

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

Hi Zenica

Good to hear that the Red Bull idea helped. I'm no fan of the taste as I implicitly associate the taste with the pain of a CH as I've never tried it previous to having CHs.

Where can you get Mother at 4 for NZ$5?

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

My family used to refer to smarties as the "happy pills". I think because of the sugar content. Perhaps there is a reason to be happy when drinking something that has any positive result.  None of my previous medications have touched the latest attacks.  I'm so tired now that I don't even feel like doing my favorite things. 

The taurine does cut that pain down and I'm looking into a US based supplement supplier that sells it in the powder form for fitness related purposes.  I believe they use the powder to make the drinks too and its much cheaper than pill form and of course its a huge tub full so its also less expensive then the red bull.

I got enough of the mother brand to last until my appt and hopefully I will have o2 within a month.  I didn't want to resort to drinking these things more than once in a while, but I can't get relief any other way now.   Hopefully i'll get something else to help.

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

That's great news!!!! Here is a Macgiver non re breather mask.....take notes! ;)

A one gallon freezer bag. Cut a small hole in the bottom, put the tube leading from your regulator into this hole, tape it up airtight. Take one of those cardboard tubes from either a toilet paper roll or a paper towel roll. Put it in the top of the bag, close the bag and tape it up as best you can to seal it aroud the cardboard tube. You are now the proud owner of a Non Re Breather mask. Turn the regulator on, suck out of the cardboard tube, draining the oxygen now stored in your bag, remove  mouth, exhale, repeat.

What you are now accomplishing is getting 100% pure oxygen to your lungs. No exhaled air, no outside air. It really is that simple. Hoping it works as well for you as it has for me.

Joe

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

Great, as long as you understand the basic concept...pure 02 at a rate to encourage hyper ventilation....get creative! ;)

Joe

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.

Hey,

I've just gone through a power hit from the beast.  It was storming outside and barometric pressure is a trigger,  so is the movies.  I always seem to come out of them with a massive hit and yes I drank a "mother" energy drink to combat it.  It didn't really touch the kip 9.  I was near hyperventilation in the car and ran through the house to my tank.  It hurt so bad that I just bumped the lpm to 25 and continued to hyperventilate.

I don't really know what to say.

It felt completely normal to sit there moaning until the beast started to die.  I'm still shaking now.  It is quite a shock to me...  about 4 minutes into the o2 it vanished, completely... slowly started lowering the pressure until I fell back in bed exhausted... turned the gas off and I'm actually okay. I can't believe it actually worked. 

I feel like I.. like it wasn't real or that the cure may just be in my mind but I really do feel better.  Is this normal?  Do you sort of shake after a massive hit?  What did it feel like when you first killed the beast?

Zen

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! [smiley=hug.gif]

Joe

That's really good to hear just how well O2 works for you Zenica.

So now you're convinced I'm sure of the value of the info/advice that is available here, but not available from the doctor, and next up I hope you have similar success in the preventative category.  8-)

The fact that you could abort a full fledged hit bodes very well indeed - I've been able to abort many many hits with hi flow 100% O2 at onset, but never after they've gone full blown.

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

Day 5 On Batch's Regimen.

Ok guys - point blank I think this is working!  Its the end of the fifth day on Batch's Regimen and I'm really noticing a difference in my clusters.  I take all the vitamins first thing in the morning with some juice or occasionally a flat white if I can bother to get one.

I have only had two really bad spikes since the day that I started this treatment.  The first spike occurred on the second day at night after I went to the movies during a storm.  (yeah yeah I know.. storms + movies = ouch!).  That beast, a butchering niner, was put out after a few minutes on 27lpm o2.

The second hit was actually out of sequence, it hit about lunch time on day 4.  I normally get spikes at 4pm-ish and first thing in the morning upon wake.  It hit out of no where and was not really that bad,  i'd say a 6 kip.  Since I wasn't really in a hurry to treat it and I was in the middle of watching a program on the tv I decided to kick it the long route and go for the 15lpm which not only slayed the beast, but it made me really really happy.  it was so tranquil and calming that I decided to nap for a bit after the show ended.

Other than the hits above,  I haven't had a regular hit on my normal 'witching hour'.   I have not only stopped taking the sleeping tablets, but also have woken up all 5 days with NO pain.  Before this treatment I hadn't had a pain free morning in about 8 years.

I will post more later.  I have high hopes for this method of treatment.  Its only sad that my GP wouldn't actually cover it because it hasn't had enough research done on it.  I am doing it on my own and doing fine.  I have not seen anything that would be cause for concern or debate.

Good work Batch!

Zenica

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. [smiley=hug.gif]

Joe

Now to confuse everyone from outside of NZ, I think the flat white is helping too ;)

I like them too as a great way to kick start my brain in a morning.

Yeah I forget that no one knows what that is... I always liked a good cup of joe in the morning, but now I LOVE to have one.  Especially lately because its pretty cold in my house!  There is the advantage in the states, and in some homes in NZ, that have some form of insulation/heat.  We have only a "heat box" e.g. a LP gas heater and a ton of blankets around. The landlord swares that its insulated, but he's most likely talking about a quarter of an inch of foam in the exterior and none in the raised floor.

Ahh the joys of winter!

Zenica