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        New Message Board Archives >> 2006 General Board Posts >> Newbie, confused about H2Ox3 (LONG)
        
(Message started by: AfraidOfTheDark on Apr 9^th, 2006, 7:13pm)

Title: Newbie, confused about H2Ox3 (LONG)
Post by AfraidOfTheDark on Apr 9^th, 2006, 7:13pm

Hello, I've posted on the guestbook sevreal times, but this is my first post on the boards. A little background info so you can better understand my questions:

I started having CHs in 1999 at age 28, have been episodic ever since, usually getting a cycle once a year. First it was around October, now it's around March. Everytime I'd get hit with a cycle, I would be prescribed a Prednisone dose pack, as soon as I'd take the first day's dose, the attacks were gone.

This year my cycle came in March, as usual. I got my Prednisone script, everything was fine. Within a couple days of my last dose, the CHs were back. I got another Prednisone pack. Same thing happened, couple days after the last dose, the CHs are back. This is confusing for me as it's never happened before. I remember reading a guestbook entry about drinking water at the onset of an attack. Did that a couple days ago, seemed to kill the CH. Got another attack the next night, tried it again, didn't work, so I shrugged the first try off as coincidence. Didn't have a CH the next night.

Last night around 2am, I felt the beginning of an attack, so I tried the water again. It didn't seem to work at first, so I sat back antiicipating the attack. It was suddenly gone. All's well. 5am I felt a new CH coming, did the water again, same thing happened. 7am another attack, it got up to the point where I began tearing and rocking, but it also stopped. 9am another attack and this time water didn't stop it.

So I'm confused. By drinking water at the onset of an attack, am I just putting off the inevitable? Is that why I suddenly had 4 attacks when I have always only had one a day? Or does it sound like I may be going chronic? After the first round of Prednisone, I did have two attacks during the day, which never happened before. The water seems to help, but if it means I will have several attacks because of it, it's not worth it. I have no insurance and cannot really afford a 3rd trip to the ER + new and likely expensive meds (a third round of Prednisone is not recommended). Any advice would be much appreciated. Thanks!

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Drk^Angel on Apr 9^th, 2006, 7:31pm

Unfortuneately, CH cycles can and will change for most ppl. It doesn't necessarily mean that you are going chronic, but it may mean you'll have to deal with what seems like a brand new beast. I doubt that the water treatment is actually changing your cycles, but if it appears to be helping at least some of the time, it may be a good idea to keep it up. You may also want to consider getting on O₂, one way or another. If you can't get it prescribed, or can't afford the cost of medical O₂, then perhaps you should try welder's O₂. There's lots of information on these boards about rigging up a welder tank to a proper regulator, and plenty of ppl here that can give you advice (I haven't gone that route, so I can't give any specific assistance on it). Good luck!

PFDAN............................................... Drk^Angel

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Drk^Angel on Apr 10^th, 2006, 7:53pm

Bumpin' back to the first page, just in case anyone who can help may have missed it.

PFDAN................................... Drk^Angel

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Charlie on Apr 10^th, 2006, 8:10pm

Maybe not an answer but things that affect criculation and drinking does if only slightly, might have something to do with it. This is what I did:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by cardogman on Apr 10^th, 2006, 9:46pm

Do you have an insurance policy. My O2 is covered but I had to fight a little with the company.

I may have dropped in a little late but 02 raelly helped me a lot. Most of the time it took the pain away within 10 minutes at 100% at 8-10-15 liters per minute for about 10-15 minutes until my first 6 week cycle was over.

Good luck and if you need info on how to get the O2 let me know.

Burt

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Melissa on Apr 10^th, 2006, 9:55pm

Check out the "Medications, Treatments, Therapies" section of the message board and look for Alternative treatments such as Kudzu, Shrooms, RC seeds or HBWR seeds.

I'm sorry your pred burst didn't end your cycle for you. Read as much as possible the links to your left and visit this page: http://www.ouch-us.org/chinfo1.htm , as you need to be prepared to cope with clusters.

Welcome to the family tho!
:)mel

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by floridian on Apr 10^th, 2006, 10:08pm

on 04/09/06 at 19:13:08, AfraidOfTheDark wrote:

So I'm confused. By drinking water at the onset of an attack, am I just putting off the inevitable? Is that why I suddenly had 4 attacks when I have always only had one a day?

I don't think the water-water-water approach would increase the number of headaches or make a cycle worse, unless you are already magnesium deficient and it flushes out more magnesium (magnesium deficiency is pretty common in clusterheads, and about 40% benefit from magnesium).

If you don't have insurance, have you considered things like kudzu, melatonin, magnesium, and B-vitamins? Clusterbusters (seeds, shrooms) are another route to consider. And the welders oxygen - probably won't cut down the number of hits, but a very good chance it will reduce the pain.

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by AfraidOfTheDark on Apr 14^th, 2006, 12:03pm

Hi, I couldn't reply sooner as for some reason I'm having difficulties entering the message boards now.

A lot of you mentioned new approaches, they are very interesting. I don't have insurance, so I'm hoping to find a method that's not very expensive (I'm a SAHM of three children, my husband works). It sounds like the O-2 helps many of you, I'd be interested in reading up on it if you have links to share.

Should anyone be interested in my recent observations... First of all, while my CH always came once at night, I'm suddenly finding them unpredictable. They range from once to 4-5 times a day, not often at the same times, and varied in intensity.

Now that I knew water was possibly helping to kill the attacks, it's like a drug, hard to stay away from it. I was terrified that drinking the water was killing the CH, only to have them come back hours later, but it's impossible to turn down anything that may kill the pain at that moment.

Anyway, after a few days of trying this, I've found that it is indeed helping to kill the attacks. Just as soon as I knew the attack was coming on, I'd immediately drink a lot of ice cold water and within a few minutes, the severe pain suddenly subsided and I am left with the dull but bearable pain I experience after my CH reaches climax. This is the point where I am able to lie still and cradle my head. If you are like me, then you know at the height of the CH, it's impossible to lie still and to touch your head, it's agony.

This method works best for me if I drink the water as soon as possible. If I wait a bit, it either seems to take longer to kill the CH or it doesn't work at all. The water does not seem to put off the inevitable now that I've noticed I'm not longer in a predictable cycle.

This is all pretty much a new learning game for me as I'm forced to find other ways of coping. You know what's funny? Before, whenever I'd get the yearly cycle, the very first headache would put me in a panic, desperate to get the meds to kill the cycle. Now that my meds aren't working and I'm also having many more attacks, I'm suddenly much more calm and resigned about it. ::)

Thanks again for the support everyone.

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Sandy_C on Apr 14^th, 2006, 3:18pm

If the ice water helps, even if not everytime, keep on drinking. When I'm in cycle, ice water is the ONLY beverage I drink, and I drink at least 10 12 oz glasses a day. Mind, you, I am on very friendly terms with my bathroom commode :-/. Water will not stop a CH hit, nor will it prevent the next one. But the combination of ice water, and a bag of frozen peas laid on my head, I can survive the hits. What's the worst thing that will happen if you don't use the water treatment? Nothing. If it helps. Use it.

Oxygen - read the information to the left on "oxygen info". 02 seems to help a good percentage of CH sufferers on this board. If you don't have insurance that will cover it, welders 02 will work just as well. Read and learn.

You asked "By drinking water at the onset of an attack, am I just putting off the inevitable?" No, because it' inevitable. By drinking the water, if you are finding some marginal, minor relief at the time - it's worth it. Water will not kill an attack, nor prevent another one. Water won't hurt you. Water, to me, seems to "cool" my pain, not take it away, and it's also a fantastic way to lose weight
;;D

Sandy

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Dragnlance on Apr 14^th, 2006, 3:33pm

Something that has changed my life is Kudzu.
About 17.00 a month, and worth every cent. Any health food store has it. Make sure it is labeled "extract" on the front label. Start with 2 a day, once at breakfast once with dinner. You can take LOTs of this stuff if you need, but this works for me, and a bottle lasts a full month that way...

Wishing pain free time for you!!

Dragn

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by AfraidOfTheDark on Apr 14^th, 2006, 5:35pm

on 04/14/06 at 15:18:55, Sandy_C wrote:

If the ice water helps, even if not everytime, keep on drinking. When I'm in cycle, ice water is the ONLY beverage I drink, and I drink at least 10 12 oz glasses a day. Mind, you, I am on very friendly terms with my bathroom commode :-/. Water will not stop a CH hit, nor will it prevent the next one. But the combination of ice water, and a bag of frozen peas laid on my head, I can survive the hits. What's the worst thing that will happen if you don't use the water treatment? Nothing. If it helps. Use it.

You asked "By drinking water at the onset of an attack, am I just putting off the inevitable?" No, because it' inevitable. By drinking the water, if you are finding some marginal, minor relief at the time - it's worth it. Water will not kill an attack, nor prevent another one. Water won't hurt you. Water, to me, seems to "cool" my pain, not take it away, and it's also a fantastic way to lose weight
;;D

Sandy

Believe me, I'm becoming intimate with the bathroom trips myself! ;;D I even make myself nauseus from drinking so much water at once. Small price to pay though...

I know it may be unusual, but so far 9 times out of 10, gulping down water at the onset of an attack has indeed killed my CH. Or more accurately, greatly diminished it. If I am fully awake during an attack, I am aware of the continuous rise of the CH until it reaches its peak (I think we get rudely awaken from sleep because it's only as the attack starts getting intense that we are woken from a deep sleep). This water thing has most often diminished the attack before it reaches the point of my eye shutting and watering, my nose running, and my rocking back and forth. It may be just a fluke, time will tell for sure.

As for the kudzu, I've just noticed the topic and I'm very much interested. The threads are a bit of a jumble so I'm having a little trouble understanding form, amounts, and frequency. Is this stuff sold in a regular department store?

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by AfraidOfTheDark on Apr 14^th, 2006, 5:37pm

on 04/14/06 at 15:33:14, Dragnlance wrote:

Oops, Dragon actually already answered my questions. Somehow I missed everything but the extract part. Can you tell I need some sleep?? :-[ ;;D Sorry Dragon...

Title: Re: Newbie, confused about H2Ox3 (LONG)
Post by Kris_in_SJ on Apr 14^th, 2006, 6:44pm

Sorry you're suffering so!

The water thing is really helpful. I drink tons while in cycle.

The other thing that really helps is starting a preventative like Verapamil at the same time as a Pred dose pack. By the time the Pred is done, usually the preventative is kicking in. At least prevents decrease the intensity and duration of attacks. Meantime, you still need an abortive like oxygen or Zomig or Imitrex for the biggies.

You can't keep taking Pred without suffering some long-term effects from it.

If you haven't seen this link, you might want to check it out:

http://www.brightok.net/~mnjday/chtherapy.pdf

Show it to your doc, and keep drinking that good old H2O.

Kris