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Ed Carter

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Questions and observations from a newbie
Jan 25^th, 2011 at 5:38pm

Hi Joe,
Thanks for a warm welcome from your good self and others. I guess I'm still a newbie (not to CH, just to the site) so I'd like to throw a couple of questions and observations out there if I may?

I've had a great time researching the site and I commend all users for it's informative content. In my case, I found the info on stretching the imitrex very interesting but have the following to ask:

When the vial is stripped out of the applicator that needle looks extremely long; when manually injecting is the needle required to go in all the way to the hilt? I've noticed when having used the applicator as intended the needle remains visible for about a half of it's complete length. It's a small point (no pun intended) but I rather worry about doing other damage if I'm pshing the needle in too far. I also noticed that the user mentioned they were injecting in the arm and wondered if there's any advantages to that as I've always used the thigh as described in the instructions? I was just curious to know whether using the arm had an advantage of being closer to the pain site or whether it's simply a matter of preference.

I think the use of O2 is out of the question for me from a logistical viewpoint but I am certainly not discounting it and will begin to ask around.

Thanks for the energy drink info. I woke up with a level 2 at 2am this morning and chugged one of the redbulls which I'd stocked up on. CH aborted after about 15 minutes. At midday today I was again up to a level 2 and reached for the redbull but unfortunately it had no effect this time and after 20 minutes and a level 8 I resorted to the Imitrex, using the conventional method. Yep, just read your advice about only using 1 redbill when on Verapamil, duh!!!

I have increased the Verapamil dosage slowly and for 2 days have been on 560mg per day (200 in the morning, 160 late afternoon and 200 just before bedtime). Bearing in mind I am not being monitored during this self-medication process as I am managing to get my meds somewhat through the back door, I'm wondering whether I should increase the dosage a little further but am not sure as I've heard the Verapamil takes 2 weeks to kick in at it's highest dose and so far there's been no real change to my CH pattern.

I would also be interested to know at what point in the Kipp scale people are resorting to using the Imitrex injections? Tried to research it here but if it's there I apologise for missing it. My point is that I try and last as long as possible before injecting in the hope that it might only be a 10-minute CH which is sometimes the case, but, more often than not I find myself getting to the point where I keep giving it another 5 minutes and then another 5 until I'm at the level 8 or 9 stage and am left with no option other than to use it. I could then kick myself for having allowed myself to go through 30 or 40 minutes pain. I'm sure most people have been there.

As for Melatonin, no chance of getting it here otc or even in UK where I have family who could send it to me. I looked up some sellers on ebay, all from the USA, some specify that they don't ship to Germany while others simply say "international shipping" available. I have taken the chance of ordering some from the latter so it will be interesting to see if it actually gets through but at least they have notified me to say that they've shipped already.

Whew!!!! Hope I haven't bored the pants of anyone and I also fully realise that some of my enquiries are very general indeed, especially when considering that all people seem to react slightly different to the CH issue in terms of medication and how they personally deal with it. I'm beginning to wonder whether this process of committing my CH probs to a forum and also reading others' experiences is actually turning into being a little cathartic? Oh well every little helps.

Thanks for listening and for the info given so far, also thanks in advance for any replies.

Ed

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wimsey1

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Re: Questions and observations from a newbie
Reply #1 - Jan 26^th, 2011 at 7:55am

Ed Carter wrote on Jan 25^th, 2011 at 5:38pm:

1. When the vial is stripped out of the applicator that needle looks extremely long; when manually injecting is the needle required to go in all the way to the hilt?

2. I think the use of O2 is out of the question for me from a logistical viewpoint but I am certainly not discounting it and will begin to ask around.

3. I have increased the Verapamil dosage slowly and for 2 days have been on 560mg per day (200 in the morning, 160 late afternoon and 200 just before bedtime). Bearing in mind I am not being monitored during this self-medication process

4. I would also be interested to know at what point in the Kipp scale people are resorting to using the Imitrex injections? .

5. I'm beginning to wonder whether this process of committing my CH probs to a forum and also reading others' experiences is actually turning into being a little cathartic? Oh well every little helps.

1. About 1/4 inch, and no advantage as to where injected. It's a matter of personal comfort.

2. PM Batch. He uses an international supplier for O2 and they do provide oxygen into Germany.

3. I really think you are heading down a dangerous road. Increases in Verapamil should be accompanied by a DR's monitoring and EKG's. Perhaps you ought to try kudzu, or magnesium, or something less potentially dangerous?

4. A hit, for me, doesn't start high on the KIP scale but rapidly climbs shortly after onset. The sooner you inject the better. Don't let the hit take hold.

5. Yes it is cathartic, and that's one benefit. The other is actually learning new ways to attack the beast.

Best of luck and God bless. lance

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Questions and observations from a newbie Reply #2 - Jan 26^th, 2011 at 8:34am Glad ya jumped in down here Ed! We discussed the verapamil Lance, he's working up to a dose he and his doc agreed to during an earlier cycle! Joe
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Questions and observations from a newbie Reply #3 - Jan 27^th, 2011 at 7:33am Good to know, Joe. Thanks. lance
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Batch

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Re: Questions and observations from a newbie
Reply #4 - Jan 27^th, 2011 at 1:50pm

Hey Ed,

I don't know what you mean by logistical issues in obtaining or using home oxygen therapy for your cluster headaches in Germany, but I'm confident Linde Gas Therapeutics has outlets near Osnabrueck that will deliver oxygen cylinders, regulators, and NRB masks to your home.

If you're averaging 3 or more CH a day/night, you're better off ordering three of the 3000 liter or larger capacity cylinders (a one month supply) for home use and the smaller LIV systems for local travel.

I've worked with the Linde Gas Therapeutics Healthcare division since 2007 and have made several presentations at their Munich home office so I know they are well aware of cluster headaches and the need for oxygen therapy at flow rates above 15 liters/minute.

I also had no problem obtaining oxygen while on travel in Hamburg through their Oxy-Travel program where I keep my Rx for oxygen therapy on file.

The number to call for their Customer Care is 089.37000-300 and the link to the Linde Gas Therapeutics Healthcare site follows:

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

or

You'll need a valid Rx for oxygen therapy that you can email or fax to them, or if you have a physician you see locally for your sumatriptan, they will send the Rx to the appropriate local home oxygen supplier.

Hope this helps.

Take care and Cheers,

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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Ed Carter

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Posts: 8

Re: Questions and observations from a newbie
Reply #5 - Jan 28^th, 2011 at 8:38am

wimsey1 wrote on Jan 26^th, 2011 at 7:55am:

Ed Carter wrote on Jan 25^th, 2011 at 5:38pm:

1. When the vial is stripped out of the applicator that needle looks extremely long; when manually injecting is the needle required to go in all the way to the hilt?

2. I think the use of O2 is out of the question for me from a logistical viewpoint but I am certainly not discounting it and will begin to ask around.

3. I have increased the Verapamil dosage slowly and for 2 days have been on 560mg per day (200 in the morning, 160 late afternoon and 200 just before bedtime). Bearing in mind I am not being monitored during this self-medication process

4. I would also be interested to know at what point in the Kipp scale people are resorting to using the Imitrex injections? .

5. I'm beginning to wonder whether this process of committing my CH probs to a forum and also reading others' experiences is actually turning into being a little cathartic? Oh well every little helps.

1. About 1/4 inch, and no advantage as to where injected. It's a matter of personal comfort.

2. PM Batch. He uses an international supplier for O2 and they do provide oxygen into Germany.

3. I really think you are heading down a dangerous road. Increases in Verapamil should be accompanied by a DR's monitoring and EKG's. Perhaps you ought to try kudzu, or magnesium, or something less potentially dangerous?

4. A hit, for me, doesn't start high on the KIP scale but rapidly climbs shortly after onset. The sooner you inject the better. Don't let the hit take hold.

5. Yes it is cathartic, and that's one benefit. The other is actually learning new ways to attack the beast.

Best of luck and God bless. lance

Lance,

Many thanks indeed for your input, this has been most helpful.

Ed

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Ed Carter

CH.com Newbie

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I Love CH.com!

Posts: 8

Re: Questions and observations from a newbie
Reply #6 - Jan 28^th, 2011 at 8:40am

Batch wrote on Jan 27^th, 2011 at 1:50pm:

Hey Ed,

I don't know what you mean by logistical issues in obtaining or using home oxygen therapy for your cluster headaches in Germany, but I'm confident Linde Gas Therapeutics has outlets near Osnabrueck that will deliver oxygen cylinders, regulators, and NRB masks to your home.

If you're averaging 3 or more CH a day/night, you're better off ordering three of the 3000 liter or larger capacity cylinders (a one month supply) for home use and the smaller LIV systems for local travel.

I've worked with the Linde Gas Therapeutics Healthcare division since 2007 and have made several presentations at their Munich home office so I know they are well aware of cluster headaches and the need for oxygen therapy at flow rates above 15 liters/minute.

I also had no problem obtaining oxygen while on travel in Hamburg through their Oxy-Travel program where I keep my Rx for oxygen therapy on file.

The number to call for their Customer Care is 089.37000-300 and the link to the Linde Gas Therapeutics Healthcare site follows:

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

or

You'll need a valid Rx for oxygen therapy that you can email or fax to them, or if you have a physician you see locally for your sumatriptan, they will send the Rx to the appropriate local home oxygen supplier.

Hope this helps.

Take care and Cheers,

V/R, Batch

Batch,

Thanks very much for the info. I hope you don't mind but I took the liberty of PMing you for a bit of further advice on the subject.

Ed

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Questions and observations from a newbie Reply #7 - Jan 28^th, 2011 at 10:09am Batch, Thanks very much for the info. I hope you don't mind but I took the liberty of PMing you for a bit of further advice on the subject. Ed He honestly doesn't mind, and is a wealth of knowledge. He's one of our more valuable resources on 02. Joe
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