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Neoros in UK and Hong Kong (Read 1861 times)
Magnus
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Neoros in UK and Hong Kong
Jun 7th, 2012 at 11:54am
 
Hello everybody Smiley

My name is Magnús and i have been having this beast since i was around 16, 17teen i think. (can´t remember really)
Im 46 years old to day.

I dont write much here, though i read almost everything i can get my eyes on.

Im episodical cluster and live in Iceland and as most of us, i didnt get any help or relief from doctors until i found u and read all the post here, and learned from you gyes. By zeroxing infos and showing them lazy asses. (ecxuse my icelandic °-°)
Many thankful tears did fall, the day i found u. I owe u my life Smiley

The weather in Iceland doest help much here, because its always changing and the long rainy months, can take its toll.

I get delivered Oxigen to my home every week when im in a cycle and my insurance do pay for everything.
I wish it was like that for everybody.. I even can get as much triptans and verapamil as i want because of u.
Oxygen gave me my life back. I use of course verapamil and Imigran nasal or injecton too because the do work on my, everytime. Not sure about the verapamil.

I am trying to bust on mushrooms these days and it goes so and so.. not sure if the Icelandic m mushrooms are strong enough.. but im trying and will try my fourth trip tomorrow.. hopefully getting RC seeds aswell this week.

Now my question is this.. (Sorry for this long introduction)

Im travelling to Hong Kong and London these days and will be doing so in the future but i dont know about any good Docs or Neuros that understand what we have and could prescribe oxygen and meds for me when there.

Does anybody have an idea for me to look?
If you could recommend someone would be so great.

Thank you again.
Maggi
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Magnus
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Jeannie
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Re: Neoros in UK and Hong Kong
Reply #1 - Jun 7th, 2012 at 1:57pm
 
Hi Maggi,

I won't be much help in answering your question about Dr. in Hong Kong or London.  Hopefully someone else will come along to aid you there.

I am posting to ask you if you are aware of the need to detox before busting with mushrooms or seeds?  For the best results, one must not have any triptans in their system for five days.  Just thought I might mention it in case you were not aware.  It could be the difference in whether it works for you or not.

Jeannie
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Batch
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Re: Neoros in UK and Hong Kong
Reply #2 - Jun 7th, 2012 at 4:47pm
 
Hey Maggi,

Give the folks at OxyTravel a call...  It's run by the Linde Group of companies.  Once they have a confirmation you have a valid Rx for oxygen therapy, they can arrange for oxygen to be delivered to your travel locations in most countries.

The Linde Group also includes BOA, AGA, PanGas and a few other companies who supply medical oxygen around the world.

The OxyTravel home pages for Iceland, UK and Hong Kong follow although only one call to the office in Reykjavik is all that's needed...  You can have your Doctors office fax or email them your Rx.  After that you can give them your travel itinerary and you're good to go.

I've used them all over the world and the oxygen is always at the hotel or my travel destination when I arrive.

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A second suggestion is to ask your doctor for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the metabolite of vitamin D3 used to measure your vitamin D3 status.

I suspect you're vitamin D3 deficient and that deficiency has been contributing to your cluster headaches.  Nearly all of episodic CH'ers with active CH who have gone in for this test have had their results come back less than 30 ng/mL, (75 nmol/L).  Some chronic CH'ers have tested as high as 55 to 61 ng/mL.

The really interesting news is nearly all of the CH'ers who have gone pain free or had a significant reduction in the frequency and severity of their CH while on the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3, have tested in a range of 60-110 ng/mL.  A few have tested higher between 130 to 150 ng/mL.

So far the efficacy of this regimen with nearly 150 CH'ers participating is 75% and most have a favorable response in less than three weeks. 

Most of the other 25% who have yet to respond to this regimen may have other medical conditions that prevents them from building 25(OH)D reserves high enough or metabolizing it further to 1,25(OH)2D3, the active metabolite.

The only note of caution is to use the vitamin D3 softgel capsules (5,000 IU are best), and not cod liver oil.  Although cod liver oil will work, it has a high level of vitamin A and too much vitamin A can interfere with the benefits of vitamin D3.

The 5,000 IU liquid softgel vitamin D3 capsules can be hard to find in some countries... If you run into that problem, you can order them over the internet easily from several sources...

Please stop by Jimmy's Kitchen for me while in HK and have a bowl of their French Onion soup...  It's the best I've had and one of my favorites.

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Magnus
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Re: Neoros in UK and Hong Kong
Reply #3 - Jun 7th, 2012 at 8:10pm
 
Wow, thanks gyes Wink
This is really helpful.

No not while doing the shrooms Jeannie, i dont take any meds while trying that. Thanks for the warning. ☺

Thank you Batch for all this really usuful info. 

I talked to the Linde company in Iceland and they are going to help me with this all. Yesssss!! Wink She ordered the Demand Valve for me aswell.  Really really nice lady and a looooong way from how it was just few years ago. We actually are going to work some together. She has been following my story through the oxygen therapy for some time she told me. I was the first one who tryied it and she want more people to know about it.
So ill write my story in the medical magasin about oxygen as medication. Hope it will bring more of us to the table. She feares that there are so many out there suffering. Can u believe it? She actually was worried about us Wink
Where has this woman been all my life.

Im so relaxed now when i see that through Oxitravel and Linde it is gona be perfect. Thank you for that.
I was in Hong Kong a month ago and got hit really hard that time. Went to the hospital and the doc hadnt heard of this syndrome before (ring a bell?) we had to Google it together. It is kinda funny when i think of it now. The only thing he had to offer was to rent a machine (electrical) Which i got because i was desperate. But it didnt work as u must know.

I have also been boosting up my D3 to 10.000i. and been doing that for a week now. We only have 2000i here so i take five but i see now that my cod oil is probably doing some damage to that method as u say. What about omega 3 then?
Would you know if it will interfere with the shrooms in any way aswell?

I will definently have that D3check next time in a attack. I want to see what i get.

Great to hear that that method is working. Im definently gona keep on trying D3.

And u can be sure i will try Jimmys Kitchen when back there. Cant wait to try the Onion soup Wink

Thank you all once again.
Maggi
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Magnus
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Batch
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Re: Neoros in UK and Hong Kong
Reply #4 - Jun 9th, 2012 at 7:30am
 
Hey Maggi,

Thanks for the feedback...  and great news about starting vitamin D3 therapy.  If this regimen is as effective for you as it is for 75% of the CH'ers who try it...  you'll be pain free in less than three weeks and may not need the OxyTravel services...

Make sure you take calcium and the cofactors.  I recently completed another stress test of my 25(OH)D reserves... This time by taking 10,000 IU/day vitamin D3 and 2,000 mg/day. Omega 3 Fish Oil, but no calcium or cofactors... after a month my serum concentration of 25(OH)D dropped to 60 ng/mL...  so at least for me... the cofactors are very important.

I briefed the Linde Healthcare managers from all over the world at a conference in Munich a few years back about the results of a study we conducted on the demand valve method of oxygen therapy.  All of them were amazed that this method of oxygen therapy was 3 to 4 times faster in aborting a CH than a flow rate of 15 liters/minute and that the efficacy was better than 95%. The folks at AGA across the Scandinavian countries and Life Gas here in the US were there and have been among the most proactive to make the demand valve method of oxygen therapy available to CH'ers.

Regarding cod liver oil - There's a difference between cod liver oil and Omega 3 Fish Oil...  There's very little vitamin A in the Fish Oil... and unfortunately, you don't always know how much vitamin A is in the cod liver oil...  Too much vitamin A can cause problems...

You'll get enough good vitamin A and the β-carotene, the vitamin A precursor, from a serving of carrots, squash or spinach.  Fried chicken or beef liver once a  week will also keep your vitamin A levels in the optimum range.

As far as the shrooms and busting go...  I've tracked at least 25 CH'ers on the ClusterBuster web site and so far, 20 have gone PF on the anti-inflammatory regimen and none have reported any problems between using the two methods of preventing CH at the same time...

In fact, from researching some related studies, it appears the ergocalciferol (vitamin D2) in the shrooms may be providing some of the CH prophylaxis when busting with them.

I envy your trips to Hong Kong.  I was a WestPac sailor flying off the aircraft carriers USS Hancock, USS Midway and USS Kitty Hawk between '71-'81.  During that time I had the good fortune of making 8 port calls in Hong Kong.  I made my last trip there in '87.

My first stop after arrival in HK was always the Cow Hoo Shoe store...  to have more shoes made to order...  The last time I walked in in '87, I was wearing a pair of their handmade loafers and the manager commented..."Nice shoes... and of course we made them." 

He asked to see one of my shoes, looked at a number inked inside the shoe, then walked into the back room only to return with the original pair of hand carved wooden lasts dated Feb 1971 for LT Pete Batcheller...

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Magnus
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Re: Neoros in UK and Hong Kong
Reply #5 - Jul 4th, 2012 at 8:10am
 
Hi Batch

Went to Jimmys Kitchen and no doubt about that the onion soup is unbeliaveble. Thanks for sharing.
Been here for two weeks and its been heaven.. Its so beautiful and crasy here.. like Gotham City at night and Wonderland at daytime. Terrific!

The nigths have been really tough, three to four hits a night, but relativily good at daytime. Oxygen finally in place in HK and not really that expencive. But it took time to set that contact up.

Been trying to establish contact in London for oxygen but so far no good. Hope it will happen today or tomorrow.

I have been on the D3 anti inflamatory reginem with little results yet.
I started it on the 12th of June

Mornings:
d3 10.000Iu a day
omega 3 - 2000 mg
zink 15 to 30
b6 50 mg

Afternoon: - with lemonade
calcium citrate 600mg
magnesium 400 to 800mg
I havent got borum yet but try to get it through honey.

Tried everything ive seen written in the other post that u started." 123 PF days and i ..." with nuances.. uping the d3 dose to 50.000IU one day and few days later again with 40.000IU. Upping the calsium aswee. The works. I get alot of direct sun everyday in Hong Kong these days. Play basketball but no luck so far.

I got really bad stomack aches because of all of this. Might have to do with the d3 capsules. I only got 1000IU in Hong Kong.

My shit turned white, (to much calcium?)  °-°  I upped that when i upped the D3
Even getting more hits than usual.

i did the blood test aswell and still waiting for the results from that. Hope that will come down soon.

Im going to London next monday and will probably have more D3 and stuff to choose from.

I will keep on trying the D3 and all help is so welcome. Maybe im doing something wrong?? Any ideas?

Has anyone had stamach aches because of this regimen?

Thanks again so much.
Magnús
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Magnus
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Batch
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Re: Neoros in UK and Hong Kong
Reply #6 - Jul 4th, 2012 at 12:19pm
 
Hey Maggi,

Thanks for the update and trip report...  I'm glad you liked the onion soup at Jimmy's Kitchen. 

20,000 IU/day vitamin D3 with a 50,000 IU loading dose once a week should be sufficient to elevate your 25(OH)D into the CH response zone of 60 to 110 ng/mL as fast as possible.  You'll have a better idea how much longer it will take to go pain free once you have your 25(OH)D lab test results.

Some of the upset stomach could be due to the  magnesium as too much can easily cause lower GI tract distress.  Cut it back to 200 mg/day.  You can also cut the Omega 3 Fish Oil out completely for a couple days to see what happens.  600 mg/day calcium should be sufficient.

The only other thing to try is some Centrum Silver multi-vitamins.  A single tablet/day has the right amount of the vitamin A that's needed for the autocrine mode of vitamin D3 metabolism that takes place in the body's cells as long as the serum concentration of 25(OH)D is high enough.

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Magnus
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Re: Neoros in UK and Hong Kong
Reply #7 - Jul 5th, 2012 at 6:14am
 
Thank you Batch, you are an angel Wink

Im trying the doses you recommended from today and will try to stay out of to much omega 3, calcium and magnesium. Im not sure i go all the way to D3 20.000IU or more right away. But doing 10.000IU now and will try to get Centrum multi vitamins aswell next week. I saw thoese D3 IU 5000mg in the picture you had and I'm gone get them aswell. 

Will keep trying the regimen and keep you posted when i have my blood test results or any kinda result

Best to you my friend and thanks so much. Wink
Maggi
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