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Ctech
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First Post - First Rant
« on: Sep 10th, 2007, 6:43pm » |
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Hello!
I’ve been visiting CH.com for about two years now and I think it’s time to introduce myself. My name is Chris; I am 30 years old and have been episodic since I was 21.
It took me seven years to find out what I have – my mother read about it in a Time Life home medical book... Before then I had seen countless doctors – even a neurologist and none of them figured it out.
First I was told that it was my ear (most of my pain comes from the right side of my head) so I had my ears cleaned and was sent to a ear, nose and throat specialist were he told me my ears were fine and then proceeded to shove a camera down my nose. After that failed to find anything I was told “it is probably your teeth” so I had my wisdom teeth cut out. After that didn’t work the doctor thought it was my sinuses and sent me to an allergist. Every time that I went to the doctor all they wanted to do was give me prescriptions – it did not matter which “specialist” I went to I would come out of the office with a bag full of samples and a CH!
Needless to say I have very little respect for legalized drug pushing bast*rds that call them selves doctors. I know that not all of them are that way but most are from my experience. If only one doctor would have taken ten minutes of his or her precious time and do a search I could have been saved years of pain.
One thing that I have learned from having cluster headaches is that I must do my own research and look out for myself because doctors are sure not going to. I have learned more in a day on sites like this then I did in seven years going to doctors!
Sorry for venting, I have some questions but I will post them later (I’m sure you guy’s have heard enough out of me for now)!
I would like to thank everyone hear for all of the helpful advice you give. It sure has helped me. It feels good to know that I am not alone anymore.
-Chris
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Rosybabe
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"Too much of a good thing can be wonderful!!
 
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Re: First Post - First Rant
« Reply #1 on: Sep 10th, 2007, 7:49pm » |
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Welcome HOME Chris!!
You are right , we are our best advocates and many times we have to educate the Doctors about what to give us and what not.
Hope you are already familiar with the treatments available and the fact that O2 is our best abortive.
We are here to give a hand and a ear to hear you rant anytime you need to...we suffer from the same pain and we know what you are going through.
So, you are not alone....
Wishing you lots and lots of pain free time!!
Take care
Rosy.
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 Believing is just the beginning!
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Ctech
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Re: First Post - First Rant
« Reply #2 on: Sep 10th, 2007, 9:22pm » |
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Thanks Rosy!
I started my cycle a little over a month ago and about a week into it I started using 02 and it has been amazing! Most times it will knock out my attack in about ten to fifteen minutes vs. the usual one to three hours without it.
Last year when it was getting close to my cycle starting I went to a neurologist that is supposed to be the #2 rated in Atlanta and he prescribed the 02 and also some other meds that I don’t really want to take. The 02 has been really great though and I hope it keeps working so I don’t have to take anything else. He wanted me to take verapamil, lithium, imitrex injections, prednisone and 02 – all together at the same time  ? I decided to try the 02 first and work my way up...
I don’t like taking anything if I don’t have to. If it gets bad enough I would consider the cluster buster method before taking some of those meds that the neuro wanted me to take. My biggest fear is that I could turn chronic and I have heard that some meds can cause that to happen so I do not want to take any chances.
-Chris
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Rosybabe
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Re: First Post - First Rant
« Reply #3 on: Sep 10th, 2007, 10:15pm » |
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I am glad you found a Doctor willing to work with you. I know sometimes it's difficult to bring ourselves to take meds, they are scarry but they also are a huge help on fighting the beast.
Happy to hear O2 is doing its job!! 
You mention you might want to try the clusterbusters, I don't know if you hear already about the convention, it is going to be the last days of October in Austin, TX, it would be a great thing if you can attend.
I am working with my husband schedule to see if we can go also.
Hope you hang with us often, this place is full with nice and caring people and we love to add more clusterfriends to the list.
Welcome again Chris!
Rosy.
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MR_FLOOR
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Re: First Post - First Rant
« Reply #4 on: Sep 10th, 2007, 10:34pm » |
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Hey Chris,
Your story is all to familiar,most of us can tell the very same one.You are correct when you said you have to look out for yourself,that is so true.
Thats great that you don't have to take any prevents.O2 works for lots of people.Also if your in a pinch you can try energy drinks,Red Bull,Monster ect.....Good luck and welcome to your new family.
Dave
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: First Post - First Rant
« Reply #5 on: Sep 11th, 2007, 3:23am » |
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Welcome, Chris!
I'm sorry that you're in cycle, but I am glad that this time around you have O2 and you found your way here! 
Many folkes in here have been misdiagnosed along the way, so knowledge is power what comes to ch. Many docs do not know enough about ch, not even neuros. So the more you know yourself, the better!
I'm one of the "taking my treatment into my own hands" - peeps in here. After years with docs and neuros, I'm dealing with the beast with just energy drinks, caffeine tabs and vicks red energy throat tabs, which have caffeine, taurine and guarana.
I hope that Os will keep on working for you! I haven't tried that myself, but I know that it has worked wonders with many.
Welcome & lots of PF (pain-free) days your way!
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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barry_sword
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Re: First Post - First Rant
« Reply #6 on: Sep 11th, 2007, 7:10am » |
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Welcome home Chris.
Barry
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QUIT SMOKING SEPT. 03 2005,
http://barrysword.blogspot.com
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Ctech
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Re: First Post - First Rant
« Reply #7 on: Sep 11th, 2007, 12:38pm » |
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Thanks everyone!
Rosy, I will see if I can get away from work, I would love to come meet some real cluster heads in person! I just recently found out that there is a cluster head that lives pretty close to me (thanks to this site) so I emailed him and we talked for a while – it was cool to talk to someone that could understand me. Maybe I could see if he wants to go also???
Dave, the energy drinks sound promising but I have to be careful because I had a heart condition called SVT and even after I had a procedure that was supposed to correct the problem caffeine still aggravates it.
Sanna, I guess I am one of the “taking my treatment into my own hands” – people here also. I have pretty much had it with doctors, now I just need them to write my prescriptions that I want. You should really consider 02; I can’t believe how well it has worked for me!
Thanks Barry, I do feel like I have found a second home.
It feels good to actually be able to talk with people that REALLY know what its like to live with this terrible pain/fear. I get so tired of people telling me to have my eyes checked or “don’t you have high blood pressure? You know that can cause headaches  .”
-Chris
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mollybo
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Re: First Post - First Rant
« Reply #8 on: Sep 11th, 2007, 7:20pm » |
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Hey, I have SVT (supraventricular tachycardia for the acronym impaired) too. I had two radiofrequency ablations but still get short bursts from time to time, and it is aggravated by caffeine. I'm willing to suck it up and deal with the tachycardia if the caffeine helps the headaches I get at work, though. I'm experimenting this weekend with Red Bull to see if it helps.
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Ctech
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Re: First Post - First Rant
« Reply #9 on: Sep 12th, 2007, 12:34am » |
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Hey Mollybo!
I can't believe that I came across someone on this site that also has SVT! Small world I guess...
I was diagnosed with SVT right before I turned twenty four; I woke up with a heart rate of 190 BPM! So I rushed to the hospital only to sit four about two hours waiting on lab test to come back so the doctor could see that I was not on speed! They gave me a shot to stop my heart and restart it but it did not work (it made my heart rate go up to 240 BPM) It finally broke after they shocked the crap out of me with god knows how many volts. The next day I had the ablation done and was told that I would never have the problem again (yeah right)
I can drink a twelve ounce Dr. Pepper or Coke without much problems but anymore than that and I'm asking for it. As long as the 02 is working for me at home I will try to battle through the cluster headaches that I get at work -I've been doing it for nine years. Do you take any meds for your SVT? I started taking a beta blocker called Toprol for mine and it seems to have helped.
It's kinda strange hearing that a female has SVT – the doctor told me that only men get them? I guess that fits in with all of the other Sh*t that they have told me!
Thanks for the reply,
-Chris
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mollybo
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Re: First Post - First Rant
« Reply #10 on: Sep 12th, 2007, 5:54pm » |
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Hmmm, no one dared tell me that only women get SVT. I haven't heard that one!
I developed it when I was 13 - we were running races in the street during a birthday party, and my heart never slowed down. There was a pediatrition next door who took me to the hospital, and I think IV verapamil finally stopped it. I took some form of calcium channel blocker or beta blocker for a while (pronestryl? something like that), but it made me tired. Right about that time ablations were becoming the first line of treatment, so as a last harrah to my parent-provided health insurance I had the first ablation just before getting married at 20. (Young, I know, but we're still married at 32!)
It helped some, but I was doing judo and a good throw on my back would still set it off, so I had a second ablation at 25. Now it's like that short circuit is blocked - my heart can't settle into the abnormal rhythm and falls back to sinus rhythym.
I'm a little worried that I might wind up on a calcium channel blocker again - I didn't like them last time. I'm staring topamax today for a prevent and will see if that helps. Indomethacin is not helping, only O2 is.
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Ctech
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Re: First Post - First Rant
« Reply #11 on: Sep 12th, 2007, 6:13pm » |
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I hate taking meds. I have heard that some of them can change an episodic cycle into a chronic one - I am not willing to chance that.
But everyone has to make their on choices and what works for some may not work for others.
Good luck with the Topamax.
Chris
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