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Topic: I am mom. . . . (Read 490 times) |
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tenacious_one
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I am mom. . . .
« on: Jun 10th, 2005, 4:36pm » |
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Hi,
I have posted in the chiderns board already about my 14 year old daughter. Since then I have read SO MUCh of what you all have to say, and it is comforting. . . I have been crying off and on today thinking of how my child is suffering. Nothing is working for us right now, I have called th pedio-neuro's office today to ask of cancelations, adn I will call everyday if I need to. I am anxious to try the o2, and hope to high Heaven that there is a medication that will work.
I am just plain tired today. Tia woke up last night with a BAD ONE, and the pain scared her so she woke me up. I sat with her for a long long time while she fought the battle that seems to last longer ever single time. IS THIS NORMAL? IS she going to keep getting worse? Will it level out eventually? Does anyone else or anyone elses child seem almost euphoric after a long battle?? I am so tired! I have been reading all day. . . . if only reading would ease the pain for her! It has givin me so much to look for, and forward too though. We have an appointment to day, I hope we can get the oxygen!!
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We live in Houston, Alaska. we have a VERY small populaton compared to the rest of the USA, and haven't ever ran into anyone who has clusters before. I am going to ask out doc if there is a support group of any kind, are there such groups? hmmmmm. . . .
Tia is such a trooper that sh e thinks that if she can out last the pain she will win! She also wasn't truthful at first about hte amount of apin she has been in. The nurse at her schol called me a few monthes ago to tell me tht she was "faking" headaches to get out of her laungage arts class! I can' tell you haw much that "BOTHERED" me. Tia isn't the quitting type, and for her to assume that she was faking made me see red! I couldn't even call her back on it for along time, I had ot go in person totalk toher so thta I was sure she understood me, and my daughter better. I have given her info today on CH. Today is our l;ast day of school here, so thta maybe next year she will have th info and be better informed for the next case she has in her office.
I am too tired to go on! I can't stay on one subject. thanks for being here, I am so glad I found this site! I am going to rest-up for the next battle my daughter has to fight, I wish I could do more then just hold her, or sit there when the pain is too much for her and she doesn't want to be touched! I would take the pain in a mico-second if I could!
Tonia
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marlinsfan
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Re: I am mom. . . .
« Reply #1 on: Jun 10th, 2005, 5:12pm » |
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Hi Mom,
The first one I remember I was 14 or 15 (I'm 37 now), and I am sorry to say that mine got worse as time went by. My episodes and intensity have been pretty stable now for the past 12 years or so, since I was mis-diagnosed with migraines. Before I discovered pills, they lasted for different lenghts. The pills kill them 25-30 minutes after I take them.
Before I found this place (and I'M SOOOOO HAPPY I DID) I would get relief from imitrex pills, but also from Excedrin Migraine and ice packs on my head. It turns out that the caffeine in the excedrin is what did the trick. I've come to learn that Extra Strenth Excedrin and Excedrin Migraine are the same stuff. Extra Strength allows you to take up to 8 pills per day, while Migraine only 2 per day. I don't touch the stuff now, if I get one coming on during the day at work, I CHUG coffee. That has thwarted every daytime CH so far. At night, it's too late. I wake up in severe pain, and Oxygen has done the trick. I haven't taken imitrex for a few days now.
Maybe you can give your kid coffee, or tea, or Mountain Dew which is loaded with caffeine when the come during thay, and put an ice-pack on her temple. The ice pack makes the pain worse at first (yeah, I know, worse sucks!), but then makes it much much better. When they come at night, maybe you should try the Excedrin to see how it goes. The caffeine will keep her up the rest of the night, but it's better to stay up without pain than to stay up with pain, no?
You could also try to go to the fire station. The EMS people have O2, maybe you can convince them to share.... E-double has posted all over the place a document on O2. You should print that and take with you to the doc and the fire station.
Your kid is brave. I don't need to tell ya, but she is. When I was her age, I thought I was really sick and dying, so I told no-one. She's not alone. We are her and your support group.
Hang in there. If you have nothing better to do, go to the doctor's office without an appointment. Maybe they'll see her.....
Best wishes.
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tenacious_one
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Re: I am mom. . . .
« Reply #2 on: Jun 10th, 2005, 5:56pm » |
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Hi and THANK U!
I am starting to wonder after all this reading, if Tia on some level understands or maybe her body "just knows" what will help!?!?!
Because when her headaches first started, is when she got into Energy Drinks, & coffee. . . . (she even said that fast breathing sometimes helps when she wakes up at night) I would never purposly hypervelate! (lol) But who knows what the body knows!!
I am on my way to an appointment with her now, we have a whole list of things to discuss with her, and this address for her education!
Thank you SO MUCH!
Tonia
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SteCo
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Re: I am mom. . . .
« Reply #3 on: Jun 10th, 2005, 6:33pm » |
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Hi tenacious,
Read here for O2 info. INSIST on it....do not leave without it....print the following out and read it and give to your doc.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
This link is on the left hand side of this page under oxygen info. Follow it precisely.....the high flow regulator...the non rebreather mask. If you are having issues with getting it from doc.... try emailing the jonny dude on the bottom of that page... I hear he has got this stuff down pat and has ideas if you can not get it thru your doc.
Be sure to cut off the elastic banding on the mask, that way if she falls asleep, she is not continually breathing pure o2. It has a tendency to make you relax and kinda sleepy while doing it. Short stints that we Ch'rs breathe it in at are okay.
I am able to abort mine rather quickly with it 10-20 minutes. The night ones are the toughest....as they are already screaming by the time I finally wake up. It is tough to try and breath steadily with a banger CH going....but make her do it... She will be able to feel it being relieved after a time and then she will see how it works.
Yes...a CH'r needs to be left alone and not touched....do not take it personally. Just the way it is. I can barely get a grunt out, much less say anything sensible. TOTAL darkness......silence...Ice packs (some like warm)....AND O2
The most mine have lasted was about an hour and a half....if I had no o2. After a full attack.....yes....I am cooked, fried, stick a fork in me...I am DONE. Just lay there is a daze.....not believing what just happened and living thru it. Get like a headache hangover too after a bad night.
Kids are resilient.......more so than adults are I think. I think it good she has a great attitude. Be sure to keep her that way....it will help.
Here is a print out you can hand out...if you have not already.
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
On the school deal.......it would seem to the unknowing that a "HA" that happens to occur just before a particular class would be suspect.....but with these jewels.....they are like clockwork......same time....nightly and daily...and do not be surpised how many people you run into that say......just take an aspirin. They do not understand.....and will not..until they see someone go thru one. The support groups......not likely, but try. Supposedly 1% of population have them...so in a small town....your daughter is likely to be the only one to have them......the best support ....you have already found it...Right Here!!!!
SteCo
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SteCo
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Re: I am mom. . . .
« Reply #4 on: Jun 10th, 2005, 6:43pm » |
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Quote:Because when her headaches first started, is when she got into Energy Drinks, & coffee. . . . (she even said that fast breathing sometimes helps when she wakes up at night) I would never purposly hypervelate! (lol) But who knows what the body knows!!
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Keep a HA diary and watch for triggers... and maybe you can catch a trend. The fast breathing.....is in effect, the oxygen abort.. Also, there used to be a technique listed that was know as the rigirous excercise technique. Same theory IMHO as O2. If you can not get o2 right away...as soon as she feels one coming...get her to exercise....push ups..whatever and I have been able to abort a few doing this....easier said than done tho. For some it works opposite and makes it worse...just gotta try different things to see what works.
Steco
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| « Last Edit: Jun 10th, 2005, 6:45pm by SteCo » |
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maffumatt
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I am mom. . . .and a good one........
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lionsound
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Re: I am mom. . . .
« Reply #6 on: Jun 11th, 2005, 9:49am » |
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tonia,
you are doing a great job for Tia!! I know I had clusters at her age. I didn't know what they were, but I do know that the grown ups didn't pay much atttention.
You did the exact right thing by believing her, standingby her, and going into school with her. She will be fine with this becasue you are a fabulous supporter and CH makes us very tough and determined individuals.
I know that folks gave you some non-med suggestions to try...and I won't restate them. Just say that I am ice and O2 kind of gal...sometimes steam.
How'd the neuro appt go?
Be well,
lionsound
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Bob_Johnson
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Re: I am mom. . . .
« Reply #7 on: Jun 11th, 2005, 10:06am » |
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Your relative isolation from medical specialists makes it the more important for you to educate yourself so that you can, in turn, educate your doc.
Start with this article: Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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While a bit expensive, I'd strongly recommend you getting the second title. It's written by a doc for a doc and so, if you share it with you local doc, the information will be accepted more readily. (The first title is to hold in reserve in case your local doc asks for more info.)
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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jokrs2
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Re: I am mom. . . .
« Reply #8 on: Jun 13th, 2005, 7:38pm » |
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Hang in there Tonia. You are a blessing to your daughter and this board. I live just north of Seattle so I'm kinda in your area. Keep the faith because she may go out of cycle soon and I pray that this is so in Jesus name. Joe
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cazman
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Re: I am mom. . . .
« Reply #9 on: Jun 17th, 2005, 10:27pm » |
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hi there mom im a dad and i have been suffering with ch for over 15 years i cant really remember when it started ,im in the same boat as you except i know what it feels like my daughter was just diag with ch this wendsay she had been here with me acouple of times and complained she had a headache i didnt catch on till she called me 5 days ago her grandmother was not home and she got hit bad when i asked here all the questions my heart just broke onto a million pieces cause i knew right there what it was and i know how little her grandparents are gonna grasp this they been feeding her tons a alieve, motrin, ect ect , i called her grandmother later and told what was up and she hot here in to be looked at that day shes gonna get a catscan to be sure its not something else but the doctor agreed with what i said and is going to do what he can to help her , just hang in there try not elevate her stress and fears there are treatments some i would not suggest for someone that age hopefully the cycle will be short i know at that age it was very spuratic for me
i will pray for her and you tonight in the mean time read read read theres a wealth of info here some works some dont keep trying till you find what works goiod luck and god bless
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