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Cluster Headache Help and Support >> Cluster Headache Specific >> Do the cycles just keep going till the end of life http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1351247762 Message started by helplesswife on Oct 26th, 2012 at 6:36am |
Title: Do the cycles just keep going till the end of life Post by helplesswife on Oct 26th, 2012 at 6:36am
My husband and I were talking and we were wondering something. Do the cycles ever stop for good? He had a bad one the other day that got him thinking. What if you were like 80 years old and still getting cycles of headaches? You would think that would be enough to kill you. He's only 43 and already getting worn down. His cycle just started and they aren't even fast and furious yet. He's getting about one to two a day now and many of them are not as bad as during his last cycle. If you were old and frail and dealing with this, it would seem that it's almost too much to bear. Are there any older people on here with this experience? Are there any people whose cycles have just stopped for a very long time? As someone who lives with a clusterhead, I find myself very intrigued on what is actually going on in the body to bring on cycles or make them stop. For me, this understanding helps me in my role as a supporter.
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Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Oct 26th, 2012 at 7:06pm
I understand what you are saying and it's wise advice. It's true, the suffering is the lasting psychological effect of dealing with this and the anticipation of the next headache or the next cycle, as opposed to the 'pain' being what you are dealing with in the moment. Our question was just a musing and not a dread question. It was more of a "wow, that would really suck (more than it does now) if you weren't otherwise strong and in the prime of your life."
Since I've registered, I've found this site to be the most reliable source of information out there and the education in itself is helping (with the suffering side of things). Thanks for sharing. |
Title: Re: Do the cycles just keep going till the end of life Post by shooky on Oct 26th, 2012 at 10:01pm
helplesswife - living with the beast is sometimes hard, but it certainly is possible. Most people in these forums aren't miserable IMHO. I think most people DO find good solutions eventually, and your husband is lucky to have a supportive wife like yourself.
I suffer from CH since I was 11, and I can tell you much have change in the past 30 years. And it should probably be 10-15 years at the most until genetic research will supply us with medicine that will make CH a minor disorder, easy to handle. |
Title: Re: Do the cycles just keep going till the end of life Post by Bob P on Oct 28th, 2012 at 9:53am
Mine stopped at age 54, 8 years ago. Started when I was around 20 y/o.
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Title: Re: Do the cycles just keep going till the end of life Post by moneymaker on Oct 28th, 2012 at 1:24pm
well with the way clusters bounce your blood pressure and pulse all over the place from high to low and some of the meds do the same thing you wonder how it dont take the life of us 40-50 year olds,heck i am sitting here resting with BP 148/105 and Pulse rate at 112,BP was 120/80 and pulse rate 80-82 all the time before my cycle started in september and not sure if its the predisone they have given me as i am off it now or the verapamil or sumatriptan pills,but it is getting old thinking you might have a heart attck while waiting for your cyle to end
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Title: Re: Do the cycles just keep going till the end of life Post by Brew on Oct 28th, 2012 at 5:52pm
I'm almost 52 now. With the exception of one little 4-week bump in the road, mine stopped 3 years ago. Not on their own, but through a well thought out program of busting and the vitamin D3 regimen that continues to this day. I'm sure if it hadn't been for these, I'd still be singing the blues.
He can take control, but he's gotta want it. |
Title: Re: Do the cycles just keep going till the end of life Post by BobG on Oct 29th, 2012 at 8:58pm
I'm 65 years old. My clusters started at about age 27. I had 2 clusters each year, each for about 3 months. At age 51 I had my worst cluster ever. Then no attacks until age 58. Right now I'm in my longest, yet mildest, cluster. It's been going on since last November but is under pretty good control with verapamil.
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Title: Re: Do the cycles just keep going till the end of life Post by moneymaker on Oct 29th, 2012 at 9:41pm
Has anyone ever had there testosterone levels checked?I do know when i had my last cycle 2 1/2 years ago my level was very low,docotr put me on injections until i got back to normal and never had another cycle until last month,there is such a thing as male menopause and it will give us cluster cycles just like women get migranse during there menopause
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Title: Re: Do the cycles just keep going till the end of life Post by clavers on Oct 30th, 2012 at 9:48am
I'm 72 and still getting hit, but not as bad as in the past.
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Title: Re: Do the cycles just keep going till the end of life Post by Kate in Oz on Nov 2nd, 2012 at 8:15am
Anything is possible ;)
Mine started around 17/18, I'm now 43. I've not had a proper cycle for well over a year now. Only 3 or 4 small hits this year so far, fingers crossed. A couple of years ago I decided to stop taking drugs - verapamil - and just rely on oxygen. Since then my ch has become almost non existent. I hope it has gone forever, but not stupid, still have a tank ready to go by the bed just in case. I wish your husband and everyone suffering at the moment all the very best. Cheers, Kate |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 2nd, 2012 at 11:21pm
He finally went to get o2. He was hesitating because he didn't want to accept that he couldn't get rid of them for good with some kind of treatment and the thought of just controlling the pain was not good enough for him. This cycle started mild enough, but the last week or so has been unbearable to watch. Not wanting to take the drugs they prescribe, we looked for other alternatives, thought we found one, seemed to work, then boom. They're stronger than ever and last really long. He couldn't close his eyes, because just resting seemed to bring them on, so he decided to get the o2 today. Took the advice here and asked for the non rebreather mask and 15 lpm flow and now he's looking forward to getting a good night's sleep tonight. It doesn't change the fact that he's basically stuck close to home in case one strikes, but at least there's ready relief. There's just something about watching your husband, a big strong man, crumble like a helpless little child...very hard to watch knowing there's nothing you can do. At least now, he's properly set up with 02 and taking the vitamin regimen.
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Title: Re: Do the cycles just keep going till the end of life Post by Kate in Oz on Nov 4th, 2012 at 6:57am
Glad to hear that you've got the 02 set up.
I don't know if this will be helpful to you? but I used to grab a hot water bottle and rest my head on it whilst sucking back the 02 - sometimes a bad idea because it took too long to set up and really with 02 you need to get on and breathe, breathe, try to relax (lol ;) ) as soon as it hits. Others use cold things, frozen peas etc. Anyhoo maybe that might be something that you could do? Grab a hot/cold compress for him? I suspect for me it was just that burning heat was a distraction from the boring pain.... anyhoo thought it might be worth mentioning. I do hope the 02 brings some relief - and if it doesn't work at first, do ask questions!! Sometimes I have had to sit on it for a good 20 mins, sometimes only 10-15. And do try to relax and let the pain wash over you rather than fight against it - if at all possible. I think that the stress of the pain can make it worse... and lets face it, it does hurt and really not much you can do. I used to think that I had hot liquid pain in my head and I'd just take notice of it and breathe and try to relax. Eventually it is like the tide goes out again and the pain is gone. Probably just sounds like silly talk ;) I wish you both all the very best!! Kate |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 4th, 2012 at 7:47am
Thanks. Seems like it's pretty bad this time around (kind of an understatement, I know). It's just continuous hits all night. Without the 02 he'd be screwed completely. He pretty much has to keep it on all night and even then. But, on the plus side, it keeps them tamed a little.
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Title: Re: Do the cycles just keep going till the end of life Post by Kevin_M on Nov 4th, 2012 at 8:00am helplesswife wrote on Nov 4th, 2012 at 7:47am:
While using the O2, make sure the mask is secure to breath only the O2. BUT... if he is leaving the mask on this can be a very dangerous situation if that tank goes empty while the mask is on and he falls asleep, his only source of air is from the tank. If there is a strap on the mask, don't use it or cut it off. The mask should just fall off if he falls asleep. |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 4th, 2012 at 10:12am
Thanks, but it's okay as he has the continuous flow machine. The setup takes 02 from the air so it never runs out. If he had tanks that you have to fill it would cost us fortune!
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Title: Re: Do the cycles just keep going till the end of life Post by Lenny on Nov 4th, 2012 at 10:47am helplesswife wrote on Nov 4th, 2012 at 10:12am:
1)...sounds as if you have a concentrator...this is not the correct setup for CH...as it will not deliver PURE 02 nor will you get the proper LPM needed to abort an attack 2)...look on the left side (oxygen info) highlighted in yellow...wishing nothing but the best for you and your husband |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 4th, 2012 at 3:39pm
That makes sense. I was actually wondering if it was as pure as a tank and that explains why it's been helping, but not completely. Seems to be a catch 22 here then. Plus,, you are right, the concentrator only goes up to 10 LPM. I thought I was so good to ask for at least 15 LPM and the non-rebreather mask, and I still didn't get it quite right! :-s
Maybe I'll look into the cost of the others, but honestly, how often do you get your tanks refilled? Seems like it would be daily! |
Title: Re: Do the cycles just keep going till the end of life Post by Brew on Nov 4th, 2012 at 3:47pm Quote:
And that's 10 lpm of 85-90% O2 concentration instead of the 100% concentration you get from bottled O2. Getting a large welding tank of O2 is relatively inexpensive. Please don't try to buck the advice about how to use the O2. And another thing - it's well documented that strapping on the mask and trying to sleep with it DOES NOT WORK as a preventative. O2 will only help once an attack has started (abortive - not preventative). Then the idea is to SATURATE the serum O2 level as quickly and completely as possible. This is how people around here can claim such quick relief. I usually abort in about 4-5 minutes. A big welding tank (M-sized) will last me 2-4 weeks when used properly. |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 4th, 2012 at 6:35pm
I'm confused...I looked back at my posts and I'm not sure how you read that I am bucking anyone's advice. I am asking my own genuine questions and critically thinking about all the information I take in. That's one anyone with half a brain should do anytime they need information.
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Title: Re: Do the cycles just keep going till the end of life Post by Brew on Nov 4th, 2012 at 7:53pm
Perhaps a poor choice of words on my part. I apologize.
But everywhere in the literature it says 100% O2 at a minimum of 15 lpm. 25+ lpm - a rate that supports hyperventilation - is what is called for.
O2 does NOT work as a preventative - only as an abortive. |
Title: Re: Do the cycles just keep going till the end of life Post by moneymaker on Nov 4th, 2012 at 7:56pm
E tanks will last me at 10LFR about 5 times at 7-9 minutes each use,i go thru 4 per 7 day period right now which cost me $10 per tank per refill.I got 1 tank that will go dry after i get woke up tonight then i will call to get another one delivered then just go by the health care shop wed or thursday and do both.I always try to have 2 fresh tanks for the weekend,I need to get another E tank so i have a travel tank or during a holiday,Just cant afford $450 for a M tank set up.
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Title: Re: Do the cycles just keep going till the end of life Post by Kevin_M on Nov 5th, 2012 at 3:03am Quote:
I'm not sure how it goes in Canada, but you got a prescription from a doc, then you contact a provider who delivers oxygen? That is how it basically happens here, with insurance. If so, then as a first attempt, contact your oxygen company. When the provider first brought oxygen to my house, they gave me a consentrator, like yours, and tried to convince me that is what I needed. No, oxygen tanks. They were a bit resistant -- this is the same thing, blah, blah, blah -- it seemed only more convenient for them to charge a rental fee and not have to deliver oxygen. Whatever, with their disappointment and all, they reluctantly took back the consentrator and then delivered tanks, continuously whenever I've called for refills. If this is the way it works in Canada, can you have them come pick up the condenser as the wrong equipment and bring oxygen tanks? Tell them your doctor prescribed oxygen, pure oxygen only as required for clusters. Not knowing, you made a mistake in taking a condenser and it is not working for your husband. It must be only pure oxygen from tanks to be effective. Something like that. |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 5th, 2012 at 4:14pm
Yes it works the same way. Actually two years ago, we had the tanks and were going through them too fast and we thought we'd quickly use up our max insurnce. So we asked for other options and they gave us the concentrator. This time around, without knowing any better, we asked for the concentrator directly to avoid having to fill up every day. Now I understand how it works a little better. The concentrator does give relief, but not completely and now I understand why. And just for the record, he is not using it as a preventative, he just has continuous hits all night long and ends up sleeping with it most of the night. They've been relentless at night.
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Title: Re: Do the cycles just keep going till the end of life Post by Kevin_M on Nov 5th, 2012 at 7:12pm helplesswife wrote on Nov 5th, 2012 at 4:14pm:
:) Do the tanks again, he may go out of cycle before maxing insurance, and with right mask and flow, could kick butt. Quote:
Uncompletely aborted, they can be. Don't use the mask strap with tanks. Work with a preventative a little more when you can, they are time consuming to get right. Don't sleep on the cluster side. ;) |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 5th, 2012 at 9:23pm
Thanks, we'll definitely keep this advice in mind! The patience is appreciated. We are much newer to this than many of you and have to go through our own process of finding info and asking questions. I'm the information gatherer in the family.
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Title: Re: Do the cycles just keep going till the end of life Post by LasVegas on Nov 5th, 2012 at 11:08pm
Do the cycles just keep going till the end of life?
Helplesswife, you've received many educated answers from experienced wise senior citizen CH'ers. Hopefully you recognize that CH's do not discriminate upon age and mistreat each of us differently. However, we fight this together! ;) I personally am 44 and the only reason I continue to not throw in the towel is my 12 yr old son that I am a single parent to. Being that he is 12, I have at least 6 yrs of responsibility to my son who needs me until he graduates high school and becomes a legal adult. After he turns 18 though, i've given thought many times and concluded that I will not be a senior citizen tortured by the beast. Hopefully because the beast leaves, but am unfortunately prepared otherwise. Brew wrote on Nov 4th, 2012 at 7:53pm:
What Brew outlined above is EXACTLY what must be followed for effective o2 therapy. If you choose to try o2 ANY other way, it is a waste of effort and invitation for unnecessary horror! Your husband is VERY fortunate to have you as his supporter and wife! Let us know how we can be of further assistance to you both. Good luck! ;) -Gregg in Las Vegas |
Title: Re: Do the cycles just keep going till the end of life Post by helplesswife on Nov 6th, 2012 at 5:53pm
Thanks for your reply, Las Vegas. I hope that you reconsider on your decision if/when this time comes. Kids always need their parents, even as adults. It would hit him as hard later on as it would now. This is the scariest thing for me as a supporter/wife, although he's reassured me he would never do that to us (and I truly believe him), I know how bad the pain gets and your mind works differently in moments of extreme weakness/pain. I just felt like I had to reply to that.
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Title: Re: Do the cycles just keep going till the end of life Post by LasVegas on Nov 7th, 2012 at 12:58pm
Thank you for your kind words helplesswife,
However this thread is about your husband, not me. I am just fine and more educated than most neurologists on this subject, so really have no concerns. You and your husband however are in extreme dire need as he is not receiving effective treatment for the worst known pain a human can endure. I urge you to follow the EXACT outline of what Brew had written above regarding effective oxygen therapy or you may be without a husband, partially or completely, because you truly do not know what the pain is like and as you stated "your mind works differently in moments of extreme weakness/pain." Not trying to belittle you, nor scare you as much as I am trying to educate you of what your husband is using now is a prescription for horrific pain opposed to Brew's outline is a prescription for the least expensive, most effective, fast abortive method available for CH's, with no ill side effects. As mentioned above, o2 therapy is NOT around the clock. Your husband has Cluster Headaches (CH's) not breathing problems with lack of o2, right? At least that's what I understand from your postings. Based on that, get rid of the mask that has a suicide strap on it, as noted above this mask will suffocate him when the o2 runs empty. O2 therapy is to be used as needed, not around the clock, not when sleeping! Please do your husband one of the biggest favors you can and click on the yellow tab-left side of screen-CH.com store...and order an O2ptimask! Unless you are investing quite a few bucks into a custom demand valve, this is the best mask on the market, for only $27.50 and can be shipped within 2 days. It is a NRB (non-rebreather mask) with a 3 liter reservoir bag for hyperventilation, withOUT the suicide strap and it works wonderfully for everybody who has used it! Get a high flow regulator of at least 15 lpm to breathe consistently fast, preferably 25 lpm to hyperventilate. If you can not get a high flow regulator from a medical source, get a welder regulator from a welder supply store which will provide fast enough flow rates. And for Gods sake...get a large 02 tank, absolutely NOT a concentrator. If tanks are not available medically, get it from a welder supply store. You do not have to be a helpless wife, you can be a helpful wife! You've chosen to be here for advice, this is the best o2 advice you can be provided. Please go help your husband stay alive and with as minimal inconvenience to him as possible by following proven effective o2 outline. Once you are successful achieving proper o2 therapy for your husband, please change your screen name on this board to...helpful wife ;) We are here to help you be supportive of your husband and unlike anybody else, we truly understand his pain! Gregg in Las Vegas PS...Considering this neurovascular disease of your husband MAY be afflicting him for the rest of his life....this is only the beginning. Welcome to Clusterville ;) |
Title: Re: Do the cycles just keep going till the end of life Post by Kate in Oz on Nov 7th, 2012 at 10:29pm
Absolutely agree that the right oxygen set up just might change his life!! It certainly changed mine.
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