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Papp

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Another introduction
Apr 25^th, 2012 at 5:45am

Hi,hello everybody.
I am Papp, end fifties, currently in my third cluster. I have been reading here for about one year.
My CH started three years ago, most probably as side effect of a hormone deprivation therapy. I did not recognize CH in the first cluster mistaking it for migraine which I used to have as a kid. I had about one attack per day, always at night, always about 1h after going to bed. Sometimes more, with a maximum of five a day. Attacks would last 1-1 1/2 h,mainly Kip 8, sometimes worse. I have all the key symptoms, runny nose, watering and puffy eye, restlessness.
Thanks God it went away after two or three months.

The second cluster was last year, starting Feb and lasting until May. After two months I searched the web, found this site, said "aha" and went to a neurologist who prescribed Sumatriptane nasal 20 mg. This works wonder for me and cuts the attack after 10-20 min.
So basically CH is under control right now provided I got enough of the stuff. It is prohibitively expensive at 15€ per shot but covered by insurance.
Hope the situation stays like this for a while. I would not complain though if CH vanished completely.
Many many thanks for this forum and website, there's loads of valuable stuff and it has helped me enormously.
Papp

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« Last Edit: Apr 25^th, 2012 at 6:27am by Papp »

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Another introduction
Reply #1 - Apr 25^th, 2012 at 6:55am

Hi Papp and welcome

Are you using a preventive, like verapamil, lithium, topomax or similar? This should cut down how many CHs you get.

Similarly, are you using oxygen at all? Read all about it on the link on the left. It's a lot cheaper than sumatriptan (imitrex), you can use it multiple times a day and no side effects. I can use it with a non-rebreather mask plus 25lpm to kill CHs in about 5 minutes!

Keep reading and asking questions and you'll soon know more about CH than most doctors.

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Bob Johnson

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Re: Another introduction
Reply #2 - Apr 25^th, 2012 at 7:01am

Because of the isolated, infrequent attacks it's likely not worth considering using a preventive medication. However, that random attack pattern combined with your age and what you think may be the cause of the attacks, raises a concern for me.

There are a number of disorders which mimic Cluster headache but which are not, in fact, headache. Some of this mimic disorders can be quite serious.

Suggest you raise this question with your doctor to detemine whether a deeper diagnostic work up would be useful.

---
Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

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Bob Johnson

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wimsey1

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Re: Another introduction
Reply #3 - Apr 25^th, 2012 at 7:48am

Hey Papp, and welcome. We're of a similar age you and me. You wrote:

Quote:

So basically CH is under control right now provided I got enough of the stuff. It is prohibitively expensive at 15€ per shot but covered by insurance.

Actually, if you're getting attacked, they're not "under control." It is quite difficult to control the beast. For many of us the best we can do is ride it like a buckin' bronco...we stay on top while it tries to throw us to the ground. I get that cutting the attack from 60-90 minutes down to 10 minutes or so is a tremendous victory, but you can do even better. While in the early stages, Clusters can be sporadic and of short duration, they can become more entrenched and cycles can stretch out. Doesn't have to be that way, but many times it is. As long as you're coping, don't change what you're doing. But if your attacks increase, or the pain reaches levels not helped by your current plan, read this site carefully and make notes. Your doc may not be as up to date on this as are you. Good luck and God bless. lance

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Papp

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Re: Another introduction
Reply #4 - Apr 25^th, 2012 at 12:51pm

Bob Johnson wrote on Apr 25^th, 2012 at 7:01am:

Suggest you raise this question with your doctor to detemine whether a deeper diagnostic work up would be useful.

Thanks for your concern. I had szintigrams and MR. OK so far.
There are theories that CH is linked to low testosterone which I got.

And no, I never tried oxygen but I probably should. Thanks for the hint.
Papp

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Papp

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Re: Another introduction
Reply #5 - Apr 26^th, 2012 at 6:36am

Bob, I now read your article. The level of knowledge here is fascinating. My docs, even the neurologist I saw, would be jealous.
I am fairly sure what I got is CH, in particular because the other issue is dormant and I have no detectable metastases. Reading some stories here I have to be grateful that it appears to be a milder CH variant, in particular because it responds so well to sumatriptan. But I well remember the (untreated because I did not know) kip 9 attacks I had during the first two clusters where I had difficulties keeping my wife from calling medical emergency. The current cluster is waning. I now even can drink a glass of wine which is completely impossible at cluster maximum. Only too much histamine, say two slices of bread with processed cheese guarantees an unpleasant surprise in the night.

See you again, hopefully not too soon Wink

Papp

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Papp

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Re: Another introduction
Reply #6 - Jan 14^th, 2014 at 5:51am

Just a quick update.

I am now on my fifth cluster, this time since mid October, which is quite long compared to the previous ones.

I followed your good advice and got me oxygen. This works wonders for me. I go to my bottle once I feel that the shadows intensify and an attack is coming. To 80%, the attack is cut after 2-3 minutes and does not exceed kip 5. Only if I don't get up fast enough oxygen takes longer to help or does not help at all. But I had forgotten what I had read here about higher flow rates and hyperventilating. My regulator delivers up to 25 l/min, good. I'll try next time!

Currently, I am having 3-6 attacks per day, starting at 8 p.m. and ending at 7 a.m.. Very often I got shadows during daytime but have not yet had a full attack except after napping. Since oxygen works reasonably well, I could have much worse nights.
For some reason, I find that sumatriptane has sort of a preventing effect for about 6h, I mean if I take a shot I'll probably not have another attack for 6h. So if I am tired of getting up 5 times per night I sometimes take one.

Altogether, I am very grateful that medication works for me. I forgot to order oxygen AND was out of Imigran one night, that was not funny.

Greetings from Germany
Papp

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« Last Edit: Jan 14^th, 2014 at 6:19am by Papp »

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Guiseppi

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Re: Another introduction
Reply #7 - Jan 14^th, 2014 at 8:18am

I've had some luck adding an energy drink to my oxygen. I drink a red bull in between breaths of oxygen. It seems to speed up the abort, and more importantly, pushes that come backer attack several hours. Not so good for the night time hits as it REALLY wakes you up but might be worth a try on the day time hits to reduce the number of attacks. Hope you catch some pain free time soon.

Joe

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

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Papp

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Re: Another introduction
Reply #8 - Jan 12^th, 2016 at 9:43am

Just a quick update.
That 2014 cluster lasted well into spring. Not nice. I went to the neurologist while the cluster was waning and he said I should come back to him when I feel another cluster coming, for a verapamil treatment.
Well, shortly after I gave up smoking cigarettes and switched to vaping. I have since reduced nicotine input by a factor of three and couldn't be happier about the positive effects of vaping as opposed to smoking 25 a day.

I also haven't had a single attack since, that is until right now. There is a new cluster collecting strength. I had a number of Kip 5's and one Kip 8 so far. Time to go to the neurologist, but I only got an appointment for end of March... I think I shall just go to the doc and wait until he's got time. Can't wait 8 weeks!

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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
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Re: Another introduction
Reply #9 - Jan 12^th, 2016 at 10:55am

Hey Papp,

Read up on the D3 Regimen here in the medications and treatments section, under the thread: "123 days pain free....".

Then ask questions, if you have them and start taking the D3 and ALL cofactors without delay.

Lots of us are benefiting from it and in some cases, almost immediately.

By the way, I stopped smoking (cold turkey) six months ago and if has made no difference to my cluster experiences. Having said that, I generally feel much better and I am delighted to be free of the damn cigarettes.

Remember, D3.......keep well.

Peter.

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You don't stop laughing because you grow old....You grow old because you stop laughing.

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Papp CH.com Newbie Offline Posts: 6 Bonn, Germany Gender:	Re: Another introduction Reply #10 - Jan 12^th, 2016 at 11:28am Thank you Peter. I remember the D3 thing. Spoke to my doc a couple of years ago but he hadn't even heard of it. I need to read more tonight. Thanks for once again pointing me to this. Good to hear you are off stinkies. I tried cold turkey many times, to no avail. Too weak. Papp
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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
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Re: Another introduction
Reply #11 - Jan 12^th, 2016 at 12:01pm

Papp,

Most Doctors never heard of the D3 either, but I have my wife on it since she underwent surgery on her knee and she recovered very quickly.

I have my Brother on it since he had cancer removed from his liver and his oncologist thinks his recovery so far is remarkable, and he us still receiving Chemotherapy.

Both my Daughters are taking it, just for general health and my life, as far as CH goes, has improved tenfold since starting it.

So, I'm convinced. Hopefully you will be too.

Talk soon,

Peter.

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You don't stop laughing because you grow old....You grow old because you stop laughing.

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