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New member and thanks to those working this board (Read 2934 times)
PakC
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New member and thanks to those working this board
Nov 13th, 2015 at 9:51pm
 
I am just at the start of my 10th year of CH attacks, 8 of which went undiagnosed. This will be the first year of attacks I actually know what to do since last year for whatever lucky reason they didn't hit me. The thanks is that if I didn't find this site at towards the end of cycle two years ago I'd still be undiagnosed.

I'm a career expat and started having the attacks while in Hong Kong around end Oct early Nov 10 years ago. After about a week I was referred to a sinus specialist who told me yes I did have a blockage and would I like him to operate, but no it may not fix anything. The doctor giving me the second opinion asked who initially proposed operating and then quickly told me that yes, that doc always suggests operating for a bit of extra income. No real diagnosis, given some sinus medication that didn't work. I put it down to pollution and lived through it. In the early years I'd only suffer for 3-4 weeks a year so while those weeks were hell I could muddle through. During those weeks my boss would just joke about me suffering my "brain tumour" and be lenient in working hours while I got through it.

Three years in HK and I moved to Singapore, which does have great medical facilities and doctors. I figured a new start and began the medical referrals again. Ended up with a neurologist who put me through a MRI scan which at least scratched out my boss's theory of the brain tumour. A couple of thousand dollars later and he'd suggested it was likely allergies, though my wife claims he did mention Cluster Headaches as a possible but unlikely diagnosis. He sent me away to monitor triggers and once I figured them out, try to avoid the trigger. While in Singapore I was still only getting them for 3-4 weeks solid with attacks tapering off after that time. So still liveable.

3 years in Singapore and I moved to Indonesia. My first year here (year 7) and no attacks. While nervously waiting for them, as after 6 years I knew they always came around this time, nothing came beyond a few shadows. By January 2013 I thought I'd escaped them.

Then in 2013 end Oct, they came back. 2 weeks, 3 weeks, 1 month, 2 months, still there, like they'd given me a break only to return in force and never leave. I must be a bit slow on occasion, but that's when I was ready to stab myself in the head during attacks in the hope it might release some pressure, petrified of going to bed, and walking around work like a zombie from sleep deprivation. In the second month I'd worked with a GP here and she never really got past the abnormally high blood pressure which we agreed was probably caused by lack of sleep and permanent stress and fear. Did I mention I was a bit slow? That's when I said bugger the doctors, and started searching the internet. I came across Cluster Headaches and was "wow that's what I have".

So in the sure knowledge that the medical profession over here is, let's just say a little below par, I searched non-prescription treatment and found this board. That introduced me to little bottles of Kratingdaeng, which is the indonesian equivalent of Red Bull with the right Taurine and Caffeine mix you guys have posted. I did read up on Batch's D3 regimen, but unfortunately the only D3 I can find over here is in tiny components within a multi-vitamin tablet. So unless I want to chug a bottle of multi-vitamins a day, about the only vitamin D I get is from the sun out on the golf course. This is where the huge thanks comes in. 8 years without knowing what the hell is going on, 2 to 2 and a half months of nightly horror, and I'd finally found some coherent information from people who knew exactly what was going on, and that I wasn't in fact insane. The profound relief at that stage was simply enormous. So cheers all.

Anyway, the Kratingdaengs seemed to work (thought they didn't really help with the sleep when I was knocking back 3-4 a night), and got me through a few more weeks until I skipped over the pond to Singapore, went back to the same Neurologist, who referred me to another Neurologist specialising in Headaches, who confirmed my self diagnosis, gave me a jab in the back of the neck, and sent me back to Jakarta with a bags full of verapamil and melatonin, and a couple of sumatriptan auto injectors. Unfortunately it was by that time it was finally the end of the cycle so those really expensive sumotriptan didn't get used, and I dropped off the drugs after a month.

Last year again no attacks so not sure whether I'm now on a 2 year cycle or have just been lucky. Anyway this year I had my first cluster 2 weeks ago. Those unused drugs have expired. and the earliest appointment I could make with the Neurologist in Singapore is this coming Wednesday so I've been suffering through it so far but with an end (well at least treatment) in sight. Since this is the first year I actually know what to do, as usual I'm not prepared. Work hasn't given me any daylight hours to head out to try to find some Oxygen in this big Durian (for the non-travellers, a durian is a very smelly/stinky fruit found in Asia, and "the Big Durian" is how we affectionately know Jakarta). I've been trying to manage it with the ol' Kratingdaengs but they haven't been working this year, so two weeks of hell so far. My GP indicated she could find some after I returned from the Neurologist 2 years ago but I didn't bother because it was end of cycle. So now as soon as I hit the Post Message button, I'm off to the GP to find out where I can get me some O2, and am very, very much looking forward to testing it out tonight!
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« Last Edit: Nov 13th, 2015 at 9:57pm by PakC »  
 
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Bob Johnson
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Re: New member and thanks to those working this board
Reply #1 - Nov 13th, 2015 at 10:44pm
 
Let's try and introduce some of the more effective meds for Cluster to your doc. Print the PDF file below and give tohim.

Print the section on another med, just below,  which several of us have found effective and give to the doc.
=======
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed


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Bob Johnson
 
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PakC
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Re: New member and thanks to those working this board
Reply #2 - Nov 13th, 2015 at 11:17pm
 
Thanks Bob, I will pass that on.
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Peter510
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Re: New member and thanks to those working this board
Reply #3 - Nov 14th, 2015 at 3:20am
 
Hey PakC,
You can buy all your D3 requirements on-line. Is that an option for you??

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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PakC
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Re: New member and thanks to those working this board
Reply #4 - Nov 14th, 2015 at 7:04am
 
Not really, thanks though Peter. About half my mail never arrives to my house, and getting it sent to the office succeeds about 80% of the time. My folks always cross their fingers when they send X'mas presents over to the office address and even then they know never to send anything valuable since it's always opened by customs. I wouldn't trust the regularity of anything mail order or even couriered.

Anyway, in prime example of "live and learn" and feeling like an idiot after the fact, I now have my Oxygen ready to go. I ordered a taxi and got ready for my 30 min to 2 hr (depending on traffic) trip to the medical centre, got in the taxi and started chatting to the driver in my broken Indonesian. Taxi drivers as we all know, here, as in every other country I've ever lived (which is many), know everything even when they don't. This guy started telling me you can get oxygen at "toko kesehatan" (health shops) all over the city and that there was one just down the road. So I have him take me there, and 5 minutes later am walking out with a full tank, regulator (max 15Lpm but you can wind it a little higher above the scale), but unfortunately no mask. All that within 10 minutes walk from my house, no prescription required and they do home delivery refills. And they now have the mask on order so I can suck on tube after cutting off the nasal ending for a couple of days waiting on the mask to come though. Pros and cons of living in different countries...

Though I was so happy about not sitting in traffic for the rest of the day I did give the driver a fare equivalent as if we did go to the medical centre.  Smiley
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MDR
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Re: New member and thanks to those working this board
Reply #5 - Nov 14th, 2015 at 7:20am
 
You should look into the D-3 regiment you should be able to buy vitamins there cant you?

Mark.
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PakC
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Re: New member and thanks to those working this board
Reply #6 - Nov 14th, 2015 at 7:38am
 
Not that I've managed to find, Mark. Not outside of multivitamin bottles with tiny Vitamin D doses per tablet in shopping mall chemists. There may very well be a little warung (small street store) somewhere that has exactly what I need. Finding them is usually word of mouth and keeping a eye open though. Needle in a haystack, and I don't have a magnet Wink ... though maybe I should ask a taxi driver...
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« Last Edit: Nov 14th, 2015 at 7:41am by PakC »  
 
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MDR
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Re: New member and thanks to those working this board
Reply #7 - Nov 14th, 2015 at 9:54am
 
you should ask around. I did all the meds.02 and just got sick of it all I"m glad I found this site and read and listened to people this place is a life saver. For over 2yrs I've been almost pain free.

Mark.
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PakC
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Re: New member and thanks to those working this board
Reply #8 - Nov 14th, 2015 at 10:39pm
 
As an update - my first night using the oxygen last night and what a godsend. Bed at 9.30, first attack at 10.30. In 15 minutes on the O2 it had died down to the point I tried to go back to bed. Unfortunately I'd not followed the "user manual" or to be precise, the posts here that instruct to continue for 5 minutes after it has completely gone away, so the CH tried to come back and I was back on the O2 for another 15 minutes. I ended up back to bed at 11.30/12 which is still somewhat of a record. Woken again at 3.30, this time made sure of it and stayed on the O2 for 25 minutes. Back to sleep by 4.15/4.30 and slept straight through to 9am, catching up from previous lack of sleep and up at a very civilised time for a Sunday morning. The only unhappy player in the saga was the dog who's used to me waking up early from an attack, waiting for it to settle and giving her a walk at 5am. Poor mutt lucked out this morning, and was responsible for getting me up at 9 via licks in the face and barks for her walk.

Question: should I expect longer sleep periods between attacks when using O2? Or was that beginner's luck? The norm for me has been 1hr to 1.5hr max of sleep between attacks, 3-4 per night depending on how long it takes me to wind down and get back to sleep. I'm speculating that if O2 works due to vassal constriction, perhaps its taking a little longer for those vassals to dilate again after the O2 hit? The logic sounds good in my mind but I haven't seen this mentioned anywhere.

Thanks again for the advice here and via PMs, and from the number of people recommending the D3 regimen I'll be a fool not to give it a go if at all possible. The challenges here are sourcing the products. My intentions are to get myself stabilised first via the O2 (done), visit to Neurologist on Wednesday to obtain the pharma preventatives, then I can settle in to figuring out the best way to source the vitamins, even potentially using trips to Singapore to buy and bring back in bulk.
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« Last Edit: Nov 14th, 2015 at 10:41pm by PakC »  
 
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maz
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Re: New member and thanks to those working this board
Reply #9 - Nov 24th, 2015 at 5:18pm
 
Hi PakC

If you do decide to get your D3 and it's suppliments on line, you should try iherb.com. They do all the large doses that we need and the shipping cost is very reasonable. Only about £5 from California to UK and arrives in less than 2 weeks.
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Batch
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Re: New member and thanks to those working this board
Reply #10 - Nov 26th, 2015 at 6:06am
 
Hey PakC,

While you're waiting for the ClusterO2 Kit, give the following link a look-see.  It describes the optimum oxygen therapy breathing technique and procedure for rapid CH aborts.  It also provides a "How To" on building your own Redneck oxygen breathing reservoir system for less than $5 USD...

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Of course, the sooner you get started on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors, the better.

Take care and please keep us posted.

V/R, Batch
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