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Cluster Headache Help and Support >> Cluster Headache Specific >> the Aftermath http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1267324700 Message started by Cassandra on Feb 27th, 2010 at 9:38pm |
Title: the Aftermath Post by Cassandra on Feb 27th, 2010 at 9:38pm
Ok.. so I started getting these when i was 18 (i am now an old fart of 30) when i used to get them.. I could bounce back like i never got them..
When i was 23, right after i had my son.. I needed to take a small nap and then right back up again. I am starting to notice that this time, it's not so easy. Take today.. I got one (kip8) lasted about 1.5hrs.. the time between when i knew the beast was coming, and the time when i just couldn't do anything except be in the zone was longer then normal (I had thought i got out of it.. just a bad shadow) Well when it ended i was whipped.. that was about 2pm.. I am still exhausted. all i want to do is sleep. This keeps happening, it's like its slowly taking everything out of me. I can take a nap, but i am crawling to bed at night.. Can't ever keep my eyes open.. Anyone else having this happen to them? Love you all Cassandra |
Title: Re: the Aftermath Post by Guiseppi on Feb 27th, 2010 at 9:47pm
Do you have anything you use as an abortive? Oxygen? Imitrex? I guess by comparison, when my attacks first started I was 18-19. They hurt like hell but like you say I'd just bounce back up when they were done with me. They didn't hit their stride until my mid 20's. That's when I learned what KIP 10's were. A 90 minute ride that ramped up to a 10 left me beat up for 2-3 days.
I'm a young man of almost 50 now. ;) I'm in the middle of a cycle now and go NO WHERE without my oxygen tanks. Joe |
Title: Re: the Aftermath Post by Cassandra on Feb 27th, 2010 at 9:55pm
i really don't have anything to stop them.. i just deal with them. I have been trying a few things currently, but The fight for people/doctors to believe me is just too much for me.
A few years ago, i moved back down to Md.. and was refered to a nero. Well i was on Topamax, and i told her that i had been on it for a while cause my primary gave them to me. Well she asked how many times a day i was getting a cluster.. and because i was taking the med.. i was only getting an average of 2-3 a day.. Well of course she said that i didn't have clusters.. So i am very hesitant on seeing any new doctors. I am trying the energy drinks, melitonin, and over the counter headache meds (though i know they aren't working.. but i dare not take them) I went to the hospital once, and they put me on O2 and it never worked... |
Title: Re: the Aftermath Post by Guiseppi on Feb 27th, 2010 at 10:13pm
Ouch. The key to managing cluster headaches is aggressive action on your part. On cycle or off cycle, work at getting to either a knowledeable neuro, or at least a general practitioner who is open to the information you bring them.
If you're not already doing so, keep a diary of your headaches. When they start, how fast they build, how high they go, how long they stay at peak, how fast they go away. What meds you take that have and have not worked, and try to identify any triggers. Then work on getting a doctor who can deal with the long term issue of cluster headaches. Your diary will go a long way towards getting a diagnosis and some treatments that'll help you. And really watch the over the counter stuff.......we recently hospitalized my father for the upper GI ulcer, the bleeding bladder and the almost shut down kidneys his over use of ibuprofen had caused. Joe |
Title: Re: the Aftermath Post by Callico on Feb 27th, 2010 at 10:21pm
Do some looking for a headache specialist, not just a Dr or Neuro. You need someone who knows what CH is and what it does, with or without Topomax.
you said you once went to the hospital and they gave you O2 and it didn't work. I wasn't there, and you didn't say, but I'd give 10-1 odds they gave you less than 15lpm and without a non-rebreather mask. If I'm right I can guarantee it didn't work. Read the oxygen info to the left of your screen and read it until you have it memorized so that you can say NO! if your Dr wants to give you anything less. Then go the the CH.com store and order the O2ptimask. It is worth twice the little bit they charge for it. If at all possible get a prescription for at least 25lpm rather than 15. 15lpm may work for you, but I have found 25 to work MUCH more quickly. I used to say it didn't work for me either, but that was at 15 lpm and with the old non-rebreather mask. Last summer I was convinced to try again at 25 lpm and with the O2ptimask and I can knock out a hit within 5-8 mins. This evening I got hit with a K9 (first that high in a couple of years) that ramped up within 30 seconds. I couldn't even get the oxygen on, but my wife was able to do it for me and handed me the mask. I didn't even get it on right side up, but pressed it close enough to get a seal and it worked. I don't dare go without O2. Jerry |
Title: Re: the Aftermath Post by Batch on Feb 27th, 2010 at 10:30pm
Cassie... Phoebe... Zen Kitty,
Don't be a dummy... Get back on your oxygen... Drink some lemonade with lunch and dinner too... and don't forget the calcium citrate tablets with vitamin D, magnesium, and zinc. I'm surprised your tribe hasn't opened a can of "Whup up on Mom" for not using the oxygen... Hugs and take care. V/R, Batch |
Title: Re: the Aftermath Post by Chad from mn on Feb 27th, 2010 at 10:37pm
For real the oxygen does work
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Title: Re: the Aftermath Post by Joni on Feb 28th, 2010 at 6:44am Batch wrote on Feb 27th, 2010 at 10:30pm:
Batch- Why the lemonade? How much Calcium, magnesium, and zinc? Thanks- Joni |
Title: Re: the Aftermath Post by -johnny- on Feb 28th, 2010 at 11:21am
you all know you dont need a doctor to get o2. you can rent bottles from linde, praxair or delil. i get mine from tractors supply. yokes regulators and adapters are available on ebay. what you spend on co-pays and gas running around you can probably pay for that stuff. im not telling you to stop going to the doctor im just saying you don't need them to get o2. o2 is a must no matter how you get it
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Title: Re: the Aftermath Post by bejeeber on Feb 28th, 2010 at 9:43pm Cassandra wrote on Feb 27th, 2010 at 9:55pm:
You gotta catch it at the onset, and administer it as described in the oxygen info link. I find the best way to avoid being wiped out by a kip 8 is to abort it before it ever gets there. Hope that doesn't sound too smart alecky, but this is possible, and we'd love to see you getting onboard with it. |
Title: Re: the Aftermath Post by Brew on Feb 28th, 2010 at 9:47pm Quote:
Watch it, noob. ;D |
Title: Re: the Aftermath Post by Jimi on Mar 1st, 2010 at 3:53pm
So THATS why you drink lemonade. ;)
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Title: Re: the Aftermath Post by Batch on Mar 1st, 2010 at 8:29pm
Jimi,
Correctamundo... Granted it was long winded answer why I drink lemonade, but that's my story... and I'm sticking to it... I discovered how effective lemonade could be when Joyce and I took a 7-day cruise out of Long Beach, CA to the Mexican Riviera last year... I might add my oldest son picked up the tab, and this was the first cruise in 40 years where I went cruising on a boat that wasn't painted haze gray with catapults on the pointy end and arresting gear wires on the blunt end... that I didn't land on in a jet... I ordered two M-60s from OXYTRAVEL ® and ended up packing them the length of the boat to our state room... The cruise line porters wouldn't touch them... We had a half gallon of pre-mixed margaritas that Joyce prepared and a 40 pounder of Bacardi in the state room, so I ordered lemonade with dinner each night when I found they were charging $14 for a dinky glass of wine... I went the entire 7 days without a single hit... and never touched the two cylinders of oxygen... I had averaged 3 attacks a night for the three days prior to the cruise, so having no attacks for the next 7 days was an eye opener... The day the boat pulled into Long Beach, I didn't drink any lemonade and got whacked three times that night... I went back on the lemonade with lunch and dinner the next day... and slept like a baby that night... The following day all I took was the calcium citrate tablets and I got nailed twice during the flight back to Dulles... Needless to say I went back on the lemonade as soon as we got home and sailed through the next ten days without a hit... I know we're all wired differently... but go figure... and see if you come up with the same conclusions. Take care, V/R, Batch |
Title: Re: the Aftermath Post by Joni on Mar 1st, 2010 at 11:31pm
This is so interesting, Batch. I'll have to get my daughter to translate it to me...haha. I love reading about different things like that and especially when someone is taking data. Also, it is so nice that it works for you and at the same time you realize everyone is different. Thanks a bunch!!!!!
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Title: Re: the Aftermath Post by BarbaraD on Mar 2nd, 2010 at 8:38am
Batch hasn't told me about the lemonade till now, but the Calcium citrate tabs worked for me when I was in Houston and hit a high cycle. He did "yell" at me to get to Walgreen's and "get some immediately". My headaches slowed down dramatically.
About half the time I don't understand what the heck he's talking about and he just has to TELL me what to do, but for some reason - it usually helps. But when it comes to his O2, vitamins and minerals, I LISTEN to him and so far it's helped me. Hugs BD :-* |
Title: Re: the Aftermath Post by sch on Mar 2nd, 2010 at 1:26pm
Batch's research and explanation seems to support the water X 3 tip some find helpful. I think.
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Title: Re: the Aftermath Post by Joni on Mar 2nd, 2010 at 1:59pm
It is so nice of Batch to take his time researching, collecting data, and reporting this as a resource for us!
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Title: Re: the Aftermath Post by deltadarlin on Mar 2nd, 2010 at 7:11pm
Just be aware, that if you take more than 600-700 mg at ONE time, you will be pissing the excess out. Divide your calcium into 2 doses, one in the morning and one at night
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