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Topic: Maybe this should be in the Supporter's section... (Read 240 times) |
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Aiffe
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Maybe this should be in the Supporter's section...
« on: Feb 27th, 2007, 5:24am » |
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But I figure an introductory post is a good place to start. My mom is self-diagnosed with CH. Self-dx's can be tricky, but after reading the information on this board (obviously I couldn't really take the quiz, as I am not the sufferer) I think she's right.
So why am I here, and not her?
Well, I went to go hide at my boyfriend's house for a few days (for reasons having nothing to do with her) and he has internet access, while our pitiful little motel room doesn't even have so much as a phone, and the worst cell-phone reception I've ever seen. She texted me that she's having an attack... that was over an hour ago. Which means it's probably still going. I'm trying to find anything that can help.
I saw on the supporter's forum that a lot of sufferers didn't want their loved ones to witness an attack. Unfortunately, I saw one, and since where we're staying is just one room, I didn't have anywhere to go. The word "headache" is really misleading. When she first told me she'd been having bad headaches while I wasn't around, I was like, "Oh, I'm so sorry. Did you try aspirin?" Now I know better.
What's really confusing both of us is that she's forty-five, so why should this start now? She's never even had so much as a migraine before. I'm highly suspicious of the asthma medicine she was taking. She should really have asthma medicine all the time, but since we have no money and have had a lot of trouble getting insurance, this was kind of a special occasion. I think she was taking... something like Asthmacort and Singulaire. I saw somewhere that meds can trigger these kinds of headaches. Does that mean in someone who already suffers from them, or someone who's never had one before?
I'm making a list of all the "potential helps".... pepper spray, (I know she'll hate that one) Red Bull, raw ginger. Is the oxygen prescription? How can someone with no cash get some? Can't I, like, refine it out of the atmosphere or something? ^^;;; (Yes, I know, being silly here.)
(Um, on a side-note, I thought it was interesting that energy drinks were recommended. Way before my mom's cluster headaches showed up, I tried an energy drink, and I'm sure I'm allergic to them or something. I got a pretty bad headache from it.... not anything near a cluster, but something migraine-level--note that I've never had a migraine under any other circumstances--and accidental exposure to another energy drink got the same reaction. After seeing the effect it had on me, Mom of course had no desire to try one. But if it stops the clusters and gives her a migraine, I'll consider this a win.
....and on the continued side-note, a friend of mine got seriously addicted to energy drinks, drinking like five or more Red Bulls in a day, and had some weird personality changes. What the frell is in that stuff??)
As of now, poor mom hasn't found anything that really helps. She just suffers. So you can imagine how desperate she's getting. A friend of hers takes some pretty hard-core prescription pain pills (with a doctor's approval, and for good reason), and offered her one during an episode, but she refused, saying that opiates were probably controlled for a reason, and she'd rather not be addicted to them in addition to having this problem. She's a pretty stubborn person, so I think she'll probably stick to that decision. But out of curiosity, would it have helped? I mean, is there a way to *legally* get some of this stuff, and does it really stop the pain?
What about alcohol? Does that make it better or worse?
Sometimes when the headaches are starting (shadows, I think you call it) she takes NyQuill to knock herself out. The problem is, she's taking a *lot* of it, and I'm really concerned.
She hasn't texted me back, which means, 1) she's in too much pain, 2) she knocked herself out with NyQuill (not sure if that would even work on a full-blown attack) or 3) she's really hurt herself with the NyQuill, and I'm coming home to a corpse. Yeah, it's not funny.
If I took her to the emergency room, could they do anything useful for her? At least they'd have oxygen, I guess. Would they do a bunch of expensive and unnecessary tests, only to accuse her of faking it to get drugs? Is there some kind of proof in the tests, at least?
I know there's no cure, but does it at least sometimes go into remission for a few years? Decades?
As badly as we need to manage this, you have to understand, there is no money. As in, I don't know how we're going to make the rent on the motel room. (Which is cheaper than an apartment.) She recently lost her job (a bit before the headaches began) and now I'm wondering how she's going to handle another one with this new problem. But how can we hope to get treatment without money?
As you can see, my thoughts are running in circles. Any help is much appreciated.
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Guiseppi
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Re: Maybe this should be in the Supporter's sectio
« Reply #1 on: Feb 27th, 2007, 10:18am » |
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Please do join the supporters room but your post is fine here. As far as pain killers your mom is right. Many of us have tried that route. Even the strongest painkillers won't touch the headache. It's a waste of her time and the risks are huge.
With money being a problem have her try and slam either an energy drink or several cups of coffee at the first hint of an attack. Ice packs to the affected side of the head and the neck. Oxygen only works if you use it at the start of an attack. Once the headache has taken ahold, at least for me, oxygen won't reverse the progress.
Some people have reported success with ginger root, just buy a chunk at the supermarket, it loks like a deformed potato, and have her try chewing that at the first hint of a headache. If you can get supplements get her on magnesium, calcium and vitamin d supplements. We've been seeing some positive feedback on that regomen.
Alcohol bad!!!! A nasty trigger for many of us. I suspect the nyquil just helps her fall asleep after the attack is over.
How about it board, more suggestions for the un insured???
Guiseppi
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George_J
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Re: Maybe this should be in the Supporter's sectio
« Reply #2 on: Feb 27th, 2007, 10:34am » |
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....Just to add to what Guiseppi said--all very good suggestions.
Is there a fire station nearby?
If so, see if they'll let her try oxygen at 15lpm with a non-rebreather mask to find out if she's one of the 70 percent of us that oxygen helps. Firefighters have been very good about helping us out. It should be administered as soon as possible when a hit begins.
If so, get back to us and we'll talk to you about getting a welder's oxygen setup--what's needed, approximate cost of tanks, regulator and oxygen--and where to get them. I'm sure those who know more about this than I do will have some things to say about it. Then you can go from there.
A lot of the prescription drugs we use aren't appropriate for someone who has not been diagnosed. Improperly used for the wrong condition, some of them can kill.
Sorry she's getting nailed. We'll do all we can to help you figure out what might make this easier for her.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Linda_Howell
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Hearing is one thing. Listening is another.
  
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Re: Maybe this should be in the Supporter's sectio
« Reply #3 on: Feb 27th, 2007, 5:30pm » |
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Your Moms age is a very common one to have these start, although there are children who get them also.
I would tell you to forget all about the pepper spray and save your money for the enery drinks. You don't have to spend that exorbitant price for Red Bull either..any energy drink that has Caffeine and Taurine in it will do the same and you'll get a lot more for the money. Strong coffee is good too, but doesn't have the Taurine
If she goes to the ER her attack will be over before they even get around to seeing her.
Most Motel rooms have an air conditioner. Tell her to put it on full blast and sit in front of it and breath as deeply as she can for as long as she can. Kind of crude, I know...but it has worked for me in a pinch.
Like George already said...a Fire Station near-by will let her use their 02.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Melissa
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Re: Maybe this should be in the Supporter's sectio
« Reply #4 on: Feb 27th, 2007, 5:59pm » |
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In addition to the great advice given above...
Alcohol consumption can trigger attacks, not only that, but they can make it worse. Some chronics here are able to drink without getting hit, but it's best just to steer clear of it, Nyquil included.
It is possible to purchase a welders oxygen tank yourself (don't tell them the reason you are actually using it for), tubing and mask. See first if O2 works for your mom if you do the suggested Fire Station route at the first sign of an attack. Try to convince your mom not to be too proud to ask them for help.
There really arn't conclusive tests done by hospitals to diagnose cluster headaches. The best resource for that is done by a Neurologist, and they are quite expensive if you don't have any insurance.
Another thing to research here is Kudzu. Go to the medications and treatments part of the board and read up on the threads that pertain to it.
Here is a link that is full of resources that should also be looked over: http://www.ouch-us.org/chinfo1.htm
Hope this helps.
hugs,
mel
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| « Last Edit: Feb 27th, 2007, 6:00pm by Melissa » |
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