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garykinder

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just found your site
Jul 27^th, 2013 at 4:01pm

Hi, my name is Gary. I'm 38 years old and have suffered with ch for about 8 years now. I like many others was misdiagnosed for about 4 years many hospital a&e trips sent home with yet another name of pain killer that did nothing. I had all my teeth taken out I on the right hand side because it was thought to be toothache (if only) but was finally found to be a ch sufferer about 4 years ago. I use oxygen at 15 ltrs/min and inject with sumatriptan which seems to work most of the time as long as I get jabbed in time. I'm currently in one of the worst episodes I've had, previously I would get 1 or 2 attacks a night normally just after going to sleep but now I get them any time during the day or night. Took the family on holiday last week felt an attack coming on in the swimming pool just managed to get to the changing rooms for a jab and then spent the next hour doing the dance on the cold wet floor. Happy holidays! Just have to make the most of the bits in between attacks. As you can probably gather this bout is really getting to me but trying to keep my chin up, trouble is love ones are feeling helpless and spend there time sitting on pins worrying, I don't like putting people out and causing problems but there's nothing I can do if I have one at work its down tools. Sorry to moan on my 1st outing but I'm really glad I've found this site and know that you guys know exactly what I'm getting at because there are many people that have all this great advise but know nothing, even the doctors receptionist was full of great ideas apparently all I have to do is not eat cheese! It worked for her! Why didn't I think of that!

Would be great to talk to fellow sufferers because I've never met anyone that's heard of ch let alone suffered with it.

Wishing all the readers of this many pain free days and nights

Gary

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RichardN

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Re: just found your site
Reply #1 - Jul 27^th, 2013 at 4:37pm

Welcome Home Gary

You HAVE found folks who truly understand the pain of CH . . . and the info on this site is invaluable.

I am 19 months painfree after 10 yrs chronic . . .using the D3 regimen (you'll find on the "Meds,Treatments,Therapies" board . . ."123 days PF and I think I know why", a thread started by Batch some time ago and is having great success rates . . . .AND it's all over-the-counter supplements.

For right now . . . I assume you are using the 02 with a non-rebreather mask (the one with the bag)? If so, it's probably a 1 litre bag. Order an O2ptimask (should be a link on the "oxygen info" tab on left) which has a big green 3 litre bag and is MUCH more effective than the 1 litre mask.

Stock up on energy drinks ( I like Rock Star orange ) . . .Red Bull (gack). Monster . . . any that contain both caffeine and 1000 mg of taurine. The Rock Star's will say "contains two servings", so a whole can will give you 2,000 mg of taurine . . . . not really necessary. At the first sign of attack slam down an energy drink and you might be able to avoid an attack (if used quickly enough), or reduce the frequency/intensity of the attack, or reduce the time needed to abort with 02.

Try Melatonin for the night hits . .9-12 mg 45 min before bedtime. Helps many sleep through the night. Caan make you a bit groggy if you get a breakthrough in the middle of the night, "what woke me up? . . .oh, HIM again", and reach for your mask.

Water therapy (see "water X 3" . . . link on left). I've used it and it did reduce the frequency/intensity of attacks. It IS NOT easy to do.

I came here 2/02, after 13 months mis-diagnosis, having 6-8 attacks daily, sometimes 3-5 at night, most Kip 5-9, 20-45 min, and the occasional 1 1/2 -2 hr + horror. Here I found folks who not only understood, but had info to help me finally have some control over the beast.

You have a lot to read. Ask any questions you might have . . . you've found the motherlode of CH info/caring/sharing.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: just found your site
Reply #2 - Jul 27^th, 2013 at 5:19pm

Hi Gary and welcome

I'm guessing that you're in the UK from your reference to "A&E". If so, have you also looked at the UK based group, Ouch UK - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

? They will be able to give you some local info.

Whilst you mentioned abortives with oxygen and sumatriptan injections, you didn't say anything about preventives, like verapamil or lithium, to try to cut down how many CHs you get. Have you tried anything like this?

And we won't ask you not to eat cheese. But for many people with CH, alcohol is a known, common trigger, so it is worth avoiding this if it is a trigger for you.

Keep reading, ask any questions you can think and know that you've found somewhere where people know what you're going through.

Hope the rest of the holiday went well, life with CH is about having fun between the hits.

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garykinder

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Re: just found your site
Reply #3 - Jul 28^th, 2013 at 5:04pm

Thanks for replying to my first ever post, it's good to know that I am not going mad and that my computing skills haven't let me down (bit of a tech dinosaur!)

I'm not on any preventatives at the moment but will look into it, I am on the O2 with the 1litre mask and will look at getting the 3litre. Going to try the energy drinks and prepared to try most things except the illegal options!

Any other information will be gratefully received as this cluster is the worst I've had since they started and they seem to be getting worse each cluster. I just hope that I am not turning chronic! Cry

I don't know how others cope with this permanently, at least God willing there's light at the end of the tunnel from this cluster.

Thanks once again and wishing you all pain free days and nights

Gary

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wimsey1

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Re: just found your site
Reply #4 - Jul 29^th, 2013 at 8:41am

Hi Gary. You've been given some really great advice, especially on improving the effectiveness of your O2 delivery. So's you know: I use a 25lpm regulator on my portable E tank along with a 3 liter bag. It helps. I am curious about one thing, though. You said the Imitrex jab took an hour to take effect while you danced with the beast in the changing room? To me, that says it didn't work. My experience with trex is it will work within minutes. What's up? And have you tried Migranal? It's a DHE derivative. Good luck, and God bless. lance

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garykinder

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Re: just found your site
Reply #5 - Jul 30^th, 2013 at 2:14pm

Hi All,

I am Gary's wife. I have been looking around the site.

Could someone let me know what is needed for D3 Regime please?

This is the worst cluster he has had so far and joining this site is the best thing for us! I am waiting for my own login to be processed as it is a site not only for the CH'ers but family! We need as much support at times as the CH'ers, and you definitely get it from you guys.

Thanks and wish you all PFDANs.

Julia

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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: just found your site Reply #6 - Jul 31^st, 2013 at 9:31am Follow this link to the medications section of this board and read the post Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or It's the whole D-3 regimen. Joe
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RichardN

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Re: just found your site
Reply #7 - Jul 31^st, 2013 at 11:02pm

Hello again Gary and Julia (my wife's name also)

Forgot to ask how long your episodes last. I assume they start at the same time every year (or every other year). If the beast is "on time" as he frequently can be, if you don't stay on the regimen all year, you would definitely want to start a month or more before his next scheduled arrival.

Gary said that he was using the 1 litre mask at 15lpm. Wanted to make sure you were getting the most out of it until you get your O2ptimask. Have you taped up the exhale port on the side? They usually come with two exhale ports, one with a little round rubber valve, and the other open. If that's the way you have used it, try this. Remove the rubber valve and tape both exhale ports. We need 100% 02 for maximum effect. So, hold tight for the inhales and slightly crack the bottom of the mask for the exhales. DO NOT USE THE GREEN STRAP AT NIGHT! It's very easy, when you're exhausted from lack of sleep to, when the ramp stops and you know he's soon to whoosh away, and you're able to lay back down, huffing the 02 to finish him off, . . easy to drift off. If you use the strap in this scenario, you'll wake strangling for air when your tank runs out . . . remember, you've taped the exhale ports.

Is the Melatonin working for you? How about the energy drinks?

Update us when you can.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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juey

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Re: just found your site
Reply #8 - Aug 1^st, 2013 at 5:39pm

Hi Richard,

Gary's episodes seem to be July/August time in the past but he did have an episode in February for about a week this year.

This episode started in June and has been going for about 7 weeks now. This is the worst episode by far since they started. Gary has been getting around 4/5 attacks a day but the last week or so it has dropped to 1/2 with a shadow on/off for most of the day.

I am going to get the mask sorted out but I tried to purchase the mask from the site but for some reason it wouldn't let me login to go through the checkout (might be because we are in the UK)

The attacks have eased a little at the moment so Gary says he will just stick to the O2 and Imigran for the time being but the D3 regime won't do any harm either way right now, so I'm off out to buy the ingredients for it in the next 2/3 days.

The energy drinks may work but whether he drinks these or uses Imigran he'll be flying high afterwards Grin

I have to say from my point of view you just can't explain an attack to anyone and I am only watching from the side lines, my heart goes out to everyone that comes in contact with this 'Beast'. I had to film an attack only for a minute to show family what it was like as I got fed up with 'Oh it's like a migrane!' NO IT IS NOT!

Wishing you all well

Julia

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juey CH.com Newbie Offline I Love CH.com! Posts: 2	Re: just found your site Reply #9 - Aug 1^st, 2013 at 5:56pm We have just ordered the mask from the site. Just me being dumb and not doing it right but lack of sleep does that what with attacks and a teething baby well nearly 1yr old. It's just not too clever right now! Julia
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