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Topic: I Might Have CH? (Read 875 times) |
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scorpiorisingina2
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I Might Have CH?
« on: Mar 27th, 2008, 4:56pm » |
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I hope this doesn't offend anyone. I am not diagnosed with CH but have an appointment with my doctor tomorrow morning. I was online after my 1st 2 horrific experiences and was freaked out. My symptoms match up almost exactly to the symptoms of CH. This morning I was woken up around 7am (just like last time) to the feeling that a red hot poker was being stabbed through my left eye out the back of my head. I was screaming, crying and rocking back and forth with my hand clutched over my eye. My poor friend who had stayed the night was freaking out. I felt like my brain would explode out of my head. It lasted almost 2 hours then quickly went away and I was so drained I fell right to sleep. I don't know if I have CH. I know people aren't doctors on here but wasn't sure who I could talk to about it...
Thanks
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precipitate
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Re: I Might Have CH?
« Reply #1 on: Mar 27th, 2008, 5:22pm » |
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Sorry to hear about your headache, but what you just described is almost exactly what I experienced the first few times I had one (it was even early in the morning like you).
When you had the headache, did you notice if you had any other symptoms along with it? Particularly a stuffy nose, watery eye, sweating, droopy eyelid, etc. Even if you didn't, the pain still sounds very cluster like to me.
Hope you feel better, and good luck with the doc.
-Steven
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scorpiorisingina2
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Re: I Might Have CH?
« Reply #2 on: Mar 27th, 2008, 5:25pm » |
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I did look in the mirror after, and I don't know what "droopy" qualifies as, but my left eyelid (the side of the attack) was lower then the other and the pupil was slightly smaller.
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precipitate
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Re: I Might Have CH?
« Reply #3 on: Mar 27th, 2008, 5:29pm » |
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That sounds extremely cluster related to me. Of course, like you said, people on this board are not doctors, and its good that you're seeing one, but you'll also find plenty of support here that you're not alone.
If you keep getting headaches like this, try to keep track of them by possibly writing down each experience; it'll help when talking to the doc.
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scorpiorisingina2
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Re: I Might Have CH?
« Reply #4 on: Mar 27th, 2008, 5:32pm » |
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Thanks. It is hard to remember too much about the actual events besides horrifically unbearable pain. The 1st time it happened I thought it was a bad dream I was having because I thought there was no way something could actually hurt this much. I will let you know, I set the earliest appointment possible for tomorrow morning.
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Guiseppi
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Re: I Might Have CH?
« Reply #5 on: Mar 27th, 2008, 5:36pm » |
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Ouch! Hope you're wrong but it sure sounds familiar! Obviously a professional diagnosis is your first step, they eliminate all the "bad stuff" just to make certain nothing else is going on. He'll hopefully refer you to a neuro who will HOPEFULLY have a clue about cluster headaches.
For now, drink lots of water, silly and simple as it sounds it's an effective prevent for many. Go buy a couple cans of Rock Star, Monster, any energy drink which contains the combo of Caffeine and Taurine. When you feel a headache starting, slam one of these down as fast as you can chug it. Many can stop or significantly reduce an attack that way.
Start keeping a headache diary, when they start, how fast they build, how high they build, how long the peak lasts, how fast they go. There are hundreds of headache types and the diagnosis is often in the details.
If you do have CH, do not lose this website, it'll be your new second home. Either way, wishing you pain free days!
Guiseppi
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precipitate
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Re: I Might Have CH?
« Reply #6 on: Mar 27th, 2008, 5:37pm » |
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No problem. Its funny you mention having an appt. tomorrow, I just got back from seeing a neurologist for the first time since ive been having cluster pain for almost three years. He diagnosed me with having clusters and Ive got an appt. for a MRI next Monday.
But yeah, let me know how yours goes!
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scorpiorisingina2
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Re: I Might Have CH?
« Reply #7 on: Mar 27th, 2008, 5:40pm » |
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Thanks for the tips. I will be sure to keep them in mind. I had to stop my friend from calling the ambulance this morning because she thought I was dying. It was scary for both of us. I keep getting small moments all day where it feels like one starts to build but then goes away. I don't know if this is common or not, just an observation. Thanks for everyone's kind words. To be honest I am a little freaked out about the whole thing.
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precipitate
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Re: I Might Have CH?
« Reply #8 on: Mar 27th, 2008, 5:49pm » |
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Actually, I know exactly what you're talking about when it comes to pain that seems to start building but doesn't amount to anything. Thats a very common cluster complaint, I believe the people on this board refer to them as shadows.
And I know the feeling of being freaked out; Its hard to tell you not to cause Im sure you will anyway (like I have in the past). But just stay strong and remember there are plenty of great people on here always willing to listen and share advice. The good news about clusters, though (if that is indeed what you have), is that no matter how painful they are, they really cant harm you.
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barry_sword
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Re: I Might Have CH?
« Reply #9 on: Mar 27th, 2008, 6:01pm » |
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First off, welcome. Sorry about your pain. I hope you do not have CH's, but if you are diagnosed with them you are with others who fully understand what you are going through.
Secondly, please read and print off the info to your left regarding the o2 to take to your Doc. 100% o2 at 15 lpm with a non-rebreather mask. Get on it at the very first sign or twinge of an on coming attack. Works for most of us here. I take Verapamil at 480mg daily as a prevent and never let my o2 out of my sight, even now as I am out of cycle, I always have it at home and in my car 24/7.
I hope you get a Doc who understands CH's as that is half the battle right there. Let us know how it goes tomorrow for you.
If you have CH's, which it sure sounds like it, you are with your new family now. Now read all you can to your left and be an educated Clusterhead. I knew nothing about these headaches until I joined and learned. Now I am ready to do battle with the beast if and when it returns. Full o2 tanks and meds at the ready.
Best of luck and again welcome.
Barry 
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coach_bill
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Re: I Might Have CH?
« Reply #10 on: Mar 27th, 2008, 8:15pm » |
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hey there, yep sure sounds like you got some cluster action going, bummer but your in the right spot. get oxygen!!! with a non rebreather mask. demand it!! I can kill an attack in about 5 minutes and the CH attack is gone!! then think about melatoinin it can be found in any drug store, and it should help with the night hits, it works for alot of us. there are many weapons at our hands now to help with the beast, sounds also like your getting shadows, well 02 helps with that as well as redbull, but it is something your going to have to learn to deal with. i kinda think of them as like a school bully waiting to jump ya and beat you down, sometimes you can get away other times you just hope the bully gets you when your alone, and not in front of everyone, hope that helps. feel better coach bill.
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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scorpiorisingina2
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Re: I Might Have CH?
« Reply #11 on: Mar 28th, 2008, 5:38pm » |
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Hey I just got home from a long day at the doctors. I have been diagnosed with Cluster Headaches.  Kind of bummed, but my doctor who I have went to for years is AMAZING as usual, hence why I still drive 2 hours to go see her. She actually attended a full weekend conference on CH's 3 weeks ago. We are starting treatment immediately. She put me on Propranolol HCl as a constant thing and I will be getting 02 soon. she didn't say anything about the non re-breather, but the order hasn't been placed yet so I will have to call tomorrow and ask. She knew exactly what was wrong when I told her my symptoms, and said she preferred O2, to giving people more chemicals to pump in their system. So we will try this and hopefully I won't wake up screaming in the middle of the night sometime soon. The pills are being filled right now so I will take one tonight and see how that goes once it is in my system, she wants me to come back in 2 weeks for a check-up. Thanks everyone, you have all been really nice!
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vietvet2tours
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Re: I Might Have CH?
« Reply #12 on: Mar 28th, 2008, 5:53pm » |
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What pills?
Potter
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Guiseppi
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Re: I Might Have CH?
« Reply #13 on: Mar 28th, 2008, 6:07pm » |
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Way lucky catching a doc up on CH! That is one you hang on to. The non re breather mask keeps you from breathing in any air you've exhaled..(thus non re breather!  ) You need the 100% 02 to get the constricting effect you're looking for. Hope it works as well for you as it has for me!
Guiseppi
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mezza
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Re: I Might Have CH?
« Reply #14 on: Mar 28th, 2008, 7:51pm » |
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You can just ask for a non rebreather mask when you get the o2 script filled - otherwise they might give you that nasal cannula thing.
I took propranolol too for a few days-Propanolol is usually further down on the list of preventatives to prescribe. I hope it works for you! Everyone is different- if it doesn't you may want to ask your Dr for verapramil - Good luck to you!~
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scorpiorisingina2
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Re: I Might Have CH?
« Reply #15 on: Mar 31st, 2008, 10:06am » |
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Hey,
Thanks everyone for the tips. My script for the 02 should be called in today, I asked my doctor to include that i get the non-rebreather mask and she said that wouldn't be a problem. I don't know if its pure 02 but I am guessing since the doctor had just been to the conference on Cluster Headaches she knows. If not I will call and have them fix it.
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Karla
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Re: I Might Have CH?
« Reply #16 on: Mar 31st, 2008, 11:17am » |
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Proprananol was one of the first meds I tried. It did nothing for my ch. It is more a migraine medicine preventative. If this doesn't work for you ask your dr to try verapamil next. You will start on a low dose of it but don't get discouraged. Many people have to take between 600-960 mg to see results. Good luck and lets just pray that the propranol works for you.
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Karla
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