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ClusterHK

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Hello from Hong Kong
May 24^th, 2009 at 4:48am

Edit (13 Nov 2012): Scroll down to reply #11 for info on CH supplies.

What a relief coming to this site knowing that there are clusterheads around the world just like myself...though I'm pretty sure we all wished we didn't have a reason to come here. I've done a lot of reading here and I now know a lot more on how to manage the condition that I did before.

Anyway, my story that is probably similar to most people's here. Here's a few "lowlights":

I've had dozens of misdiagnoses - the most common prescription was paracetamol tablets which were more useful as Othello pieces than anything else.
The first semi-successful diagnosis was that of migraine... which wasn't too bad given that sumatriptan works on my CH.
I was once treated by a crazy neurologist who didn't explain a thing, and gave me around ten different drugs to take simultaneously. The resulting charlie foxtrot of medication caused me fall asleep all the time and made me despressed and suicidal. In desperation, I made the dangerous choice to go cold turkey on these meds as they were messing up my life as much as the CH's were!
I nearly lost a job due to cluster headaches. Needless to say, the employer's lack of sympathy wasn't appreciated, and I ended up quitting the job anyway.

I just started a cycle recently a couple of weeks ago and for the past few nights, I've been awoken by headaches at almost precisely 3:15 am each night. Last night, I had my first Kip 10 of the cycle. Two triptan tablets had no effect on aborting the pain and I was seriously contemplating calling emergency services or throwing myself out of the building. Fortunately, I managed to ride it out.

Which brings me to here and now. I'm looking all over Hong Kong for injectable triptans, and I've had no luck so far. I know that sumatriptan works well to relieve my symptoms, but between their slow speed and lack of absorbtion due to the churning stomach I get with my headaches, tablets are a bit hit-and-miss for me.

Are there any members who have been able to obtain Imitrex injections outside the US?

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« Last Edit: Nov 13^th, 2012 at 1:59am by ClusterHK »

Now trying a beer test - fingers crossed.

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Bob Johnson

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Re: Hello from Hong Kong
Reply #1 - May 24^th, 2009 at 7:43am

People in Europe have injectable version.

If you can't locate in your region, you might consider Canada as a source. In any case, you are surely aware of the high rate of counterfeit meds coming out of SE Asia--so caution is in order!

To explore Canada:

Canadian/Other Country/U.S. Pharmacy info
(Posted 9/1/05)

--------------------------------------------------------------------------------

This info from CONSUMER REPORTS, 10/05:

Source of info about online pharmacies with a similar review process plus price information:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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« Last Edit: May 25^th, 2009 at 1:17pm by Bob Johnson »

Bob Johnson

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Linda_Howell

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Re: Hello from Hong Kong
Reply #2 - May 24^th, 2009 at 6:00pm

Quote:

I was once treated by a crazy neurologist who didn't explain a thing, and gave me around ten different drugs to take simultaneously.

WOW! crazy is right. The 'dozens of mis-diagnosis" are very familiar around here, so I really feel for you. As you have already noticed the Imitrex/Imigran tablets take way too long to take effect. I wish I could help you with that.

Are you able to get a prescription for pure oxygen where you are? Oxygen is a very good abortive as it is safe, cheap and has no side efeects compared to other drugs we take. There is a link to the left of here in yellow that you should read. it will tell you just about everything and anything you evber wanted to know about 02.

In the mean-time, please know you have found a 2nd. home here where everyone knows exactly what you are going through.

Linda

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Hurt people.....hurt people. Think about it.

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ClusterHK

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Re: Hello from Hong Kong
Reply #3 - May 25^th, 2009 at 7:31am

Thanks for the warm welcome!

@ Bob_Johnson: Thanks for the info! This will be tonight's research topic for me. There may be a fair amount of red tape getting the Imitrex injections over to Hong Kong, but then again, I can't think of a worse experience than a Kip 10.

I'll start a thread in the treatments forum to document what I've tried to obtain it as it could help a fellow clusterhead in this neck of the woods.

@ Linda_Howell: I'm glad you agree that the neuro I saw was in need of a neuro himself! It's a sad fact that in Hong Kong, the person prescribing the medication is also the person selling the medication. Given such an unregulated situation, greed sets in and doctors prescribe as much as possible in order to get more profit. The population has also been brainwashed to think more medicine is always better than less, so the practise continues unfortunately.

I've been making enquiries about the availability of oxygen and it shouldn't be too hard for me to get. I'm checking whether tanks can be rented as living conditions are very cramped here and it would only be used one month out of 24 (hopefully). At least I now know that when all hell is breaking loose inside my head, I can get a taxi to the nearest hospital and tell them exactly how to administer the O₂!

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Bob Johnson

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Re: Hello from Hong Kong
Reply #4 - May 25^th, 2009 at 8:14am

Another thought... A number of us have had good success with this med as an abortive and it has the advantage of a pill and, in the U.S., a lower per dose cost compared to sumatriptan.
========
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.

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

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Guiseppi

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Re: Hello from Hong Kong
Reply #5 - May 27^th, 2009 at 10:06am

Missed your post and just wanted to welcome you to your new second home. Smiley

As far as the oxygen goes, my personal experience is that time is critical. If I can't get to the oxygen within 10 minutes of an attack starting, it won't do much for me. That's why it's so important to have the portable set up at home with you, so you can get on it right away.

Wishing you luck in getting a decent neuro!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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ClusterHK

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Re: Hello from Hong Kong
Reply #6 - May 14^th, 2010 at 12:22pm

It's been a year since I last posted... they cycles seem to occur annually around my birthday... sigh.

Anyway, last year, verapamil was very effective at reducing the CH's and the cycle was over before I could get my hands on any Imigran/Imitrex injections.

My GP couldn't get them, even though he knew how wonderfully profitable it would have been for him. The local dodgy pharmacist who is known to be able to get almost anything for a price couldn't order it in either. I haven't tried a neuro so I guess that's where I'd try next.

Currently, I'm in Singapore though, and I found that Raffles Hospital over here can get them within a few days. To buy them, I needed to make an appointment with the neuro there (Dr Seah, who's very knowledgeable on CH). The injections cost about S$180.00 per pack of two. The good thing is that you can pre-order them before seeing him.

After weeks of shadows, I had my first high-kipper this morning. Out came the Imigran. Out went the headache. Now that I know that it works very well, and I have a used injector to take apart and analyse, I'll try the Imitrex tip next time, since 6mg in one hit seemed a bit overdosey.

Oh well, another cycle in the life of a clusterhead!

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Guiseppi

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Re: Hello from Hong Kong
Reply #7 - May 14^th, 2010 at 4:00pm

Welcome back, it's a shame how the beast never seems to lose your address! The imitrex does get pricey, hope the Imitrex tip works for you.

To save some money, have you tried the energy drink trick yet? I use Red Bull but any that contain caffeine and taurine will work. When you feel a potential attack coming on, chug one of these down. Many can abort or at least really reduce an attack.....save your imitrex for the real slammers. I also use Red Bull when I get those buggy shadows that won't go away.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: Hello from Hong Kong Reply #8 - May 15^th, 2010 at 10:42am Hmmm... Hong Kong... Have a bowl of French Onion soup at Jimmy's Kitchen for me and check your PM. Take care, V/R, Batch
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neuropath

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Re: Hello from Hong Kong
Reply #9 - May 16^th, 2010 at 3:17pm

Hi Hong Kong,

Shanghai here.

Injects are also not available in the PRC, yet, if you have private medical and use an international clinic, they should be able to order it from the UK or elsewhere in Europe. Speak to your hospital's pharmacy. I would be surprised if they can't order. I regularly order stuff from Europe and have never had problems.

Good luck!

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ClusterHK

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Re: Hello from Hong Kong
Reply #10 - May 22^nd, 2010 at 12:48am

Hello all!

@ Guiseppi - I kept a couple of Red Bulls in my fridge during the last cycle. I'm not sure if they worked, but even if they don't, they're still a yummy drink and go well with vodka off-cycle. I'll stock up on some when I get back to Hong Kong next week.

@Batch - check your PM. Wink

@Shanghai - nice to know there's a fellow clusterhead at this end of the world. I ordered enough injections in Singapore to hopefully last me until my next cycle in May 2011 (funny how the beast seems to have a calendar in its pocket). I envisage a shopping trip to one of the hospitals in Hong Kong sometime in the future though. Thanks for the tip!

James

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ClusterHK

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Re: Hello from Hong Kong
Reply #11 - Nov 13^th, 2012 at 1:13am

I've noticed that this post comes up #1 in Google searches for "cluster headache hong kong" so I'll dump all the Hong Kong info I have here in case another unfortunate soul finds themselves in the same situation I was and comes to this thread.

Oxygen:
Celki Medical - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Ph 2332 3366
- Can supply 93% oxygen. Their largest tank is E size (600 litres).
- Next working day delivery (make sure you have bookings for Fridays and Mondays!)
- They ask for a doctor's letter, but they didn't bother to check it when I placed an order.
- Cost is $90 per month rental per E tank, $120 per month rental for a 15 lpm valve, $160 per fill and an $800 refundable deposit.
- They don't supply non-rebreathing masks but a nasal canula is supplied for free. For CH, you can shove into your mouth and breath out of your nose, or use it to MacGyver your own non-rebreathing apparatus. (Or just use the canula normally - it might work.)
- 93% purity and small tank size isn't ideal, but it's adequate for me. I'm still looking for other suppliers.

Non-rebreathing masks:
Matilda International Hospital - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Ph 2849 0111
- Cost $28 each
- Product details: Ref 3679, OM-3 Hi-Oxygen Mask Adult
- This is the only retail supplier I could find and it's quite a difficult place to get to.

Triptan Tablets:
Many independent pharmacists stock Sumatriptan or Zolmitriptan tablets and will sell them over the counter without a prescription. My current pharmacist sells me generic Sumatriptan made by Apotex in Canada at $200 for 6 tablets. Don't bother with the large chain pharmacists like Watsons or Mannings.

Triptan injections:
Good luck with that! I've offered a small fortune to many doctors and pharmacists and none could obtain it for me.

Verapamil:
The majority of independent pharmacists stock Isoptin SR (240 mg, prolonged release). Price is about $250 for 30 tablets.

Doctors:
Unfortunately, there's not one doctor here that I would recommend. The closest doctor I've found that could help me better than I could help myself was Dr Alvin Seah at Raffles Hospital in Singapore, a 3.5 hour flight away!

Hospitals:
I wouldn't bother. I went to Eastern Hospital during a vicious attack and they did not treat my case as an emergency. Nor would they supply a letter that would instruct the triage to supply emergency oxygen for future visits. I nearly OD'd on Imitrex injections that day.

Since all ambulances should have oxygen tanks, I might consider calling one next time I'm out of oxygen, used up my sumatriptan quota and don't give a damn about the cost. Moral of the story: Ensure you're stocked up on Oxygen! I keep three E-tanks at home and I pre-book refills every Friday and Monday even if my tanks are full at the time (the refill can be cancelled in the morning of the delivery if it's not needed).

(All prices are as of 13th November 2012 and are in Hong Kong Dollars. The exchange rate is around 1 USD = 7.8 HKD.)

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