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I need immediate help and info please. (Read 2394 times)
RareBird
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CH survivor since 1992
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Posts: 32
Egypt.
Gender: male
I need immediate help and info please.
Nov 6th, 2014 at 11:59am
 
Hi All,

Unfortunately my episodic CH became refractory and non-responsive to Verapamil anymore, even though I have increased the dosage to 240 mg X 4 pills / day!

It's a rare type of CH that finishes its cycle on the left side, then switches to the right side afterwards, starting a new cycle.

I have ordered Testosterone Propionate Gel 5 mg based on the research I have made.

Now it's mandatory to mention that I live in Sharm el Sheikh, Egypt, where no one has ever heard about CH, let alone Testosterone Replacement Therapy for Refractory CH.

I will receive the medicine tonight, and any information on the dosage / application will be much appreciated. As far as I have found the 5 mg gel shall be applied to the shoulder once daily, and no one shall come in touch with it but the patient per-se.

Any info on the period of treatment / amendments to the applicatoin dose / more info is MUCH appreciated really.
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Traveller
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Tampa, FL
Gender: male
Re: I need immediate help and info please.
Reply #1 - Nov 7th, 2014 at 8:24pm
 
RareBird:

Sorry to hear of your recurrence.  I have not heard nor read anything about using Testosterone to treat CH, so not much help there.  Perhaps you are thinking of Prednisone, a steroid medication which is highly effective in preventing CH -- for a limited period of time.  As to Verapamil, I have been taking as much as 720mg for the past year, and by and large it has worked reasonably well, (though it has become less effective over time and I am switching over to Depakote).

I travel in the Middle East frequently, and I have found that most of the US or European medical clinics have a supply of various anti-migraine medications -- which are essentially the same tools as we use for CH.  You might try the clinics, and just tell them you have migraines.  For example, I have been able to find Imitrex and Zomig (abortives) in Dubai and Turkey without much trouble (and cheaper than in the US!).

Failing that, you may have to make a quick trip to Europe -- where you should have no problem finding a doctor and the meds you need to get back on your feet.  Good luck my friend.
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Bob Johnson
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"Only the educated are
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Posts: 5965
Kennett Square, PA (USA)
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Re: I need immediate help and info please.
Reply #2 - Nov 7th, 2014 at 9:34pm
 
Print the PDF file (the attachment); gives you some options.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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RareBird
CH.com Junior
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CH survivor since 1992
(13 yo then)


Posts: 32
Egypt.
Gender: male
Re: I need immediate help and info please.
Reply #3 - Nov 8th, 2014 at 1:16pm
 
Traveller wrote on Nov 7th, 2014 at 8:24pm:
RareBird:

Sorry to hear of your recurrence.  I have not heard nor read anything about using Testosterone to treat CH, so not much help there.  Perhaps you are thinking of Prednisone, a steroid medication which is highly effective in preventing CH -- for a limited period of time.  As to Verapamil, I have been taking as much as 720mg for the past year, and by and large it has worked reasonably well, (though it has become less effective over time and I am switching over to Depakote).

I travel in the Middle East frequently, and I have found that most of the US or European medical clinics have a supply of various anti-migraine medications -- which are essentially the same tools as we use for CH.  You might try the clinics, and just tell them you have migraines.  For example, I have been able to find Imitrex and Zomig (abortives) in Dubai and Turkey without much trouble (and cheaper than in the US!).

Failing that, you may have to make a quick trip to Europe -- where you should have no problem finding a doctor and the meds you need to get back on your feet.  Good luck my friend.



Thank you Traveller. In fact we used to have Imigran/Imitrex here, way cheaper than in the U.K, but Egypt has stopped importing it in order to manufacture it locally. It took Egypt ONLY two years to do that. Egypt has then manufactured "Sumigran", which is the same as Imitrex, but then stopped producing it!!!

However, abortive meds are not my problem. My problem, as aforementioned, is the fact that Verapamil is losing effect on the crap I've got in my head, and that my life and general health are getting affected consequently.

Testosterone is a proven method in treating CH "Cypionate/Propionate", and is MUCH safer to use than Prednisone due to the latter's potentially terrible side-effects. Please look it up online for more info.

I got the information I wanted to know, and apparently there are two methods of TRT as treatment for CH:

1- Regular Therapy:

Whereas 25 mg shall be given daily for a period of a month approximately. It could be intramuscular or transdermant (gel or patch).

2- Aggressive Therapy:

100 mg daily for 14 days, not recommended except for extreme chronic cases non-responsive to any other form of therapy.

Thank you for your reply. It was much appreciated, really.
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RareBird
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CH survivor since 1992
(13 yo then)


Posts: 32
Egypt.
Gender: male
Re: I need immediate help and info please.
Reply #4 - Nov 8th, 2014 at 1:20pm
 
Bob Johnson wrote on Nov 7th, 2014 at 9:34pm:
Print the PDF file (the attachment); gives you some options.


Thanks Bob. I am aware of it all, but unfortunately it has ALL stopped working for me. I added lithium blocker and depakote "Depakin" to my Verapamil regimen, but apparently this cycle is very strange, and very resistant to everything apart from Sumatriptan so far "THANKFULLY", but again it's resistant to all known preventatives mentioned in the PDF, which I have tried before on a stage or another during my life. I have got CH for 24 years so far, so yes I am familiar with those, but I am glad there are people like you out there who try and help out other. Much appreciated mate.
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AussieBrian
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CH - It's all in your
head!


Posts: 3851
Cairns, Qld, Australia
Gender: male
Re: I need immediate help and info please.
Reply #5 - Nov 8th, 2014 at 3:27pm
 
One of the joys of CH is that something that's worked so well for so long will suddenly lose all effect. Just as interesting is that something that was useless in the past becomes the magic bullet for this cycle.

Might be worth trying some of the failures again.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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