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proudmommy24
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Hi, I'm new to this site
« on: Feb 5th, 2003, 2:03pm » |
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Hi, my name is Andrea and I am 35 and a mom of 4. I have had migraines for about 25 yrs or so and CH for 5 yrs. I listed all of this in a previous post (where I mistakenly got tied up string of posts with the "new" guy who wondered if he was in the "right place or not"...boy did I take some valuable advice...thanks, Bob...and get out of there fast!!). Anyway, I am glad I found this site. I hate this part of my life. I have tried all types of meds, most of which never touch the pain....I've been so high on pain meds that I can't walk but still screaming with pain. I am currently seeing a neurologist that wants to help (don't they all?) but I am really getting discouraged. I am currently on Topomax, Covera, Maxalt and Sedapap. None of which work all the time. So, that is some of my story. My family is precious to me and I would love to someday find a cure. I am interested in the oxygen...never heard of that therapy. Thanks for all of the info on the site.
Andrea 
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echo
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Re: Hi, I'm new to this site
« Reply #1 on: Feb 5th, 2003, 2:37pm » |
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Welcome aboard. Glad you found us, sorry you needed to search us out.
M's, CH's and a mother of four -- that's a full plate.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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JDH
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Re: Hi, I'm new to this site
« Reply #2 on: Feb 5th, 2003, 2:52pm » |
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Hi proudmommy and welcome to the club.
Drop what you're doing and run don't walk to your Dr and ask, demand, beg for, plead, steal whatever it takes to get some oxygen.
I realize it doesn't work for everyone but it's certainly worth a try.
This is the first cycle I've tried using o2 and it has made a world of difference. I can usually stop an attack in about 5 minutes if I catch it at the onset.
PFDAN's to you.
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cathy
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Re: Hi, I'm new to this site
« Reply #3 on: Feb 5th, 2003, 2:53pm » |
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Hi Andrea...I know what it's like to have 4 children, but CH as well.... 
Nice to meet you and I hope you get all the help and support you need here.
Cathy
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Kirk
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Re: Hi, I'm new to this site
« Reply #4 on: Feb 5th, 2003, 4:03pm » |
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O2 don't leave home without it
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2late
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Re: Hi, I'm new to this site
« Reply #5 on: Feb 5th, 2003, 6:26pm » |
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welcome to the board Andrea! 02 is a gift from the gods! look into it ! good luck!!! ..........2late
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domm
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Re: Hi, I'm new to this site
« Reply #6 on: Feb 5th, 2003, 6:28pm » |
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proudmommy -welcome to clusterville. Oxygen and Imitrex as abortives and Verapamil as a preventative. Covera is a form of Verapamil. I would talk with the doc about getting to an immediate release version of Verapamil, and start upping the dosage until you are PF. Some have had to go to dosages as high as 960 mg/day to achieve success. Others found the right dose very low. I've seen mixed reviews on Topomax and I don't think Sedapap is going to do much to help a CH.
Pull up a chair
Good luck in finding the right set of stuff that works for you
domm
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Charlie
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Re: Hi, I'm new to this site
« Reply #7 on: Feb 5th, 2003, 7:01pm » |
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Welcome again. This is the place and these goofs know their business. If you haven't read it, here is the little technique that worked for me and some others:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
Stick around. There is a lot of good stuff here
Charlie
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suzy617
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Re: Hi, I'm new to this site
« Reply #8 on: Feb 5th, 2003, 8:13pm » |
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Hi Andrea and welcome.
Sorry to hear of your pain and with those 4 children, yikes, must be tough at times. You might want to try the 02 thing, lots of people have had really good results from it. I will trying it myself next time around.
Hope you stick around,
suzy
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proudmommy24
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ahhhh, not another headache!!!
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Re: Hi, I'm new to this site
« Reply #9 on: Feb 5th, 2003, 10:25pm » |
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Thanks for all the great welcomes. I have been running my usual "mom bus" today so I haven't been able to be online to see all the replies until now and it is many hours after my post....but thanks for the kind words and advice nontheless. I am going to call my Dr. in the am to ask about oxygen. I am anxious to see if this will work for me.
My husband is such a saint, God bless him. He has been with me for 16 years...through good days and through the very, very bad and he is hoping that this oxygen thing will work as well. I listed in my previous post that I take Sedapap for pain....this is for my migraines...not for CH, but thanks for the advice on all the other meds. Unfortunately, I have been doomed to live with both migraines and CH and haven't found anything that gets rid of either all the time.
My head is so sore sometimes that I think it is bruised inside...does anyone else feel this way? I know that I've bruised my eyes and forehead before from the pounding and rubbing during a CH but I sometimes feel that inside my skull the brain is bruised from the pressure...I don't know. I think I am rambling from not having any adult conversation all day.... ;D.....
I will keep you posted on the oxygen...thanks for the advice.
Well, I am exhausted from a long day, so I will bid good night to all. Thanks again for the warm welcome.
Andrea
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JDH
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Re: Hi, I'm new to this site
« Reply #10 on: Feb 5th, 2003, 11:06pm » |
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Andrea, I know what you mean about your head being sore after a headache. To me it feels like I've been hit in the side of the head with a shovel. It's sore to the touch but it's not really a headache. I asked the Dr about this and he said it just goes to show how much inflamation these things cause.
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
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KingOfPain
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Re: Hi, I'm new to this site
« Reply #11 on: Feb 6th, 2003, 12:10pm » |
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on Feb 5th, 2003, 10:25pm, proudmommy24 wrote:
My head is so sore sometimes that I think it is bruised inside...does anyone else feel this way? |
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Yes.
After attack, feels like someone hit me in the head with a ball peen hammer or kicked me in the head with a steel toe boot.
Sorry you have CH but you have come to the right place........
Get that oxygen ASAP.
Read all you care to on this site, it has a wealth of information, so do the folks.
Good luck,
KingOfPain
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| « Last Edit: Feb 6th, 2003, 12:16pm by KingOfPain » |
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Kirk Huff
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Re: Hi, I'm new to this site
« Reply #12 on: Feb 6th, 2003, 4:46pm » |
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Glad you found the site, read as much as you can, information is knowledge and that can help you be pain free. Make sure you get a Non-Rebreathable Mask with your O2 and use it at the very first sign of an attack.
Kirk Huff
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proudmommy24
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ahhhh, not another headache!!!
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question about oxygen
« Reply #13 on: Feb 6th, 2003, 5:45pm » |
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Hello everyone,
I called my neuro today and as luck would have it they closed at noon (I called at 1:30 due to other mommy stuff going on) anyway, they will be open tomorrow and I plan to call at 9:00am to catch them first thing.
I have a question about the oxygen...my neuro has never even mentioned oxygen as an option...does that mean she doesn't know anything about it or is this one of those "secret code" things that you have to beg and plead for? I will jump and scream if I have to I just wondered what was up. My neuro is very helpful on most accts but likes to push drugs (as they all do) so I just wondered if this was a new thing that was being tried or if it had been around for some time so I can know how to approach this with her when I call. Thanks in advance for the input.
Andrea ;D
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jonny
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Re: Hi, I'm new to this site
« Reply #14 on: Feb 6th, 2003, 5:55pm » |
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Tell her you want to try 02 as an abortive.....Thats it!
02 therapy as been used for....ahhhh.....20-30 years (help me out on this, Ueli)
Make sure you get a non-rebreather mask and a regulator that goes to ATLEAST 12 LPM. (15 lpm is better)
Good luck
...........................jonny
Opps....PS: there is no reason she should not give you this seeing that there are no sideffects at all.
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| « Last Edit: Feb 6th, 2003, 5:57pm by jonny » |
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proudmommy24
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ahhhh, not another headache!!!
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Re: Hi, I'm new to this site
« Reply #15 on: Feb 6th, 2003, 6:00pm » |
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great, thanks Jonny. I guess that's all I need to say then. I just needed to know my stuff before I call because I don't know what she is going to come back with and I can't argue if I don't know what I am arguing about....did that make any sense??? thanks anyway.
andrea
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jonny
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Re: Hi, I'm new to this site
« Reply #16 on: Feb 6th, 2003, 6:04pm » |
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Being well armed when entering battle is a good thing, be it war or neuro......LOL
If for some reason your request is rejected E-mail me, I can get around that.....LOL ;D
.............................jonny 
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kim
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Re: Hi, I'm new to this site
« Reply #17 on: Feb 6th, 2003, 7:00pm » |
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Hi Andrea,
B4 ya go to the doc, read this site (pull up chair and read!). Print out info on meds and bring with you to doc. The 02 abortive is the ace in the whole due to it being natural with no side effects. Jonny's right about that mask. Make sure you get set up with 02 that is MOST effective in babbling(i mean battling) ;D CLUSTER ATTACKS!!!!!! Don't come back and tell us you tried the "nose pluggies"  (THEY SUCK!!!)
Best of luck. Thinkin of ya and sending pain free thoughts!
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Roxy
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Re: Hi, I'm new to this site
« Reply #18 on: Feb 6th, 2003, 8:02pm » |
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Welcome Andrea,
Sorry you're hurting, but you will find all the information you need to fight this thing here. I was on Topomax for 6 mths. and it never helped me, but 02 does. Get some as quick as you can, and life can somewhat return to normal.
Good luck,
Tracey
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I used to have a handle on life....but it broke.
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proudmommy24
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ahhhh, not another headache!!!
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Re: Hi, I'm new to this site
« Reply #19 on: Feb 6th, 2003, 8:09pm » |
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Thanks again for all of the advice. I feel like I've been fighting this battle all alone...it's nice to know that I have some folks on my side now!! Thanks for the support.
Andrea
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