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Aneta
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My fist post
« on: Jun 27th, 2007, 10:31am » |
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Hi everyone! My name is Aneta, I'm 34, & I have been a cluster head for about 10 yrs. now (about 5 yrs. officially diagnosed). Although this is my first post I have been coming to the site for several years now. I have found it to be a great help to know that I am not alone. I am just starting a new cycle & since it looks like my CH's are not going anywhere I figured that it's about time I post.... who knows, maybe my experiences can help others as the hundreds I have read have helped me deal with CH.
As I said I am starting a new cycle. I have had the feeling it's coming for a few weeks & it kicked in Saturday morning... Full blown 10, for about 30-45 min. then just shadows till Monday evening also a 10 on the kip 45 min. duration, & major shadows, same thing Tuesday, & it woke me up today... there seems to be a difference from all my other cycles
1. In the past they build up to kip 10's over several weeks, I have never started at 10
2. I have used caffeine and it has helped in the past (coffee, Rockstar, red bull) Now I take coffee & rockstar & I instantly puke.... & not like oh I feel sick & puke, but it shoots out of me violently!!! I have never thrown up before during a CH, other drinks like water, juice, do not make me throw up.... just caffeine.... strange, ha?
3. I have a pain in the front of my neck on my cluster side & it seems to swell up. The back of my neck has always had the first twinges before, never the front.
Everything else is the same. My symptoms are pretty typical, tearing, droopy eye, stabbing insane pain, always same side (left), CH come once a year & stay 8-16 weeks, during peak they come about every hour & last 45 min- 2 hrs then another 1 hr break. I am uninsured & although I was proscribed O2 I could not afford it. I have used trex & others like it with no success. I am trying to get shrooms & hope that I can since the past 5 cycles have been insanely bad, & really way past ten on the kip. Well that's my story. Aneta
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Shedz
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Re: My fist post
« Reply #1 on: Jun 27th, 2007, 10:34am » |
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Welcome aboard Aneta, shame you've had to find us but you in the right place!!
Paul.
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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Kris_in_SJ
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Re: My fist post
« Reply #2 on: Jun 27th, 2007, 10:48am » |
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Welcome to the family Aneta,
If you've been lurking for a few years, then you certainly know the benefits of oxygen. If you can't afford the prescribed O2, you might want to research getting a welder's setup. There are email links to a few very knowledgeable clusterheads under the "Oxygen Info" page to the left.
Perhaps the same doc who prescribed the O2 could also get you started on a preventative like Verapamil, or maybe a Prednisone taper? I couldn't survive a cycle without them - and they're not expensive. Nobody should have to suffer through 16 weeks of uninterrupted agony!
Again - welcome. Sending PF wishes your way.
Kris
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MeljB
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Re: My fist post
« Reply #3 on: Jun 27th, 2007, 12:07pm » |
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Hi there all,
Thanks for this site, I've just been diagnosed with Cluster Headaches, I honestly thought when the doctor told me what it was that she was just fobbing me off with a label - one of those cover all ones, you know when they really don't know what it is and think that it's all in your imagination so they give you a title to make you feel better. Then I decided to look into it a little more and was surprised to find the symptoms where pretty spot on how i was feeling. I've been going through a cycle for a few weeks now and it's really affecting my relationship with my kids and my family. I hope it won't last much longer, I don't think I can take much more. I don't mean to sound self-pitying, so i'm sorry if it comes across that way.
Well, no doubt this site will be come my second home, thanks for being there.
Mel
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Rosybabe
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Re: My fist post
« Reply #4 on: Jun 27th, 2007, 12:10pm » |
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Welcome Aneta!
I am glad you decided to post. I hope you find a Doctor who will be able to prescribe a preventive for you, Yes you really need to look into welder's oxygen.
Hope you start getting better soon!
PF wishes for you!!
Rosy.
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Rosybabe
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Re: My fist post
« Reply #5 on: Jun 27th, 2007, 12:13pm » |
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Welcome aboard Mel!!
I am happy you found this site, It has become a second home for me it will sure be for you too  .
PLease stay around so we can get to know you a little better.
PF wishes for you!
Rosy.
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Aneta
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Re: My fist post
« Reply #6 on: Jun 27th, 2007, 1:58pm » |
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Thank you all for your words of encouragement & warm welcome! I think I will try to get the welders O2 this time, as nothing else seems to work for me. I have been on Verapamil but it has done nothing, other then make me feel a little strange. I can't take trex or axert because I have had severe side effects that make me feel like i'm having a heart attack... even in very small doses. I have also been prescribed & taken lithium. It also did not work for me. The past 3 years I have not tried any new drugs & pretty much just decided to deal with the pain with the help of coffee, rockstar energy drinks, & ice, ice , & more ice. I have also tried sinus buster & capsaicin creams applied inside my nose.... believe it or not I did not feel much of a burn, the CH are way overpowering, I only felt a slight burn when the CH was gone.... no point in using it if it does nothing, so I stopped. Now with a new cycle starting I'm wondering if I should see the doc for more (useless?) meds, or maybe try some alternatives....duno... The way this cycle is starting I have a feeling it is going to be very bad, & the last 5 have been almost unbearable. Thanks for listening) Aneta
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Rosybabe
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Re: My fist post
« Reply #7 on: Jun 27th, 2007, 4:51pm » |
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Aneta, you have to go back to see the Doc, there are new meds out there , remember, this condition asks fro trial and error type of approch.
I can tell you of new meds like, Topamax, prednisone, and imitrex in shots, zomig rapid melts, relpax, etc, but you have to get your O2 and get the preventative soon, do not wait until the pain is there, you have to act now!
Please go and make an appointment to see your Doc.
Good Luck, and please come back and keep us posted about how you are doing oray?
Pain Free wishes for you!
Rosy.
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MR_FLOOR
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Re: My fist post
« Reply #8 on: Jun 27th, 2007, 7:30pm » |
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You poor thing,I feel sooo sorry for to be getting kip 10s so early in your cycle.If theres one thing good about being chronic it's that I rarely get a kip 10 maybe 3 a year mine are all kip 5 through 7s mabey an 8 here and there.God I hope you get the relief you need to get through this cycle.Good luck and pain free wishes to you.
Dave
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GrandPotentate
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Re: My fist post
« Reply #9 on: Jun 28th, 2007, 11:37pm » |
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Mel and Aneta, welcome. I'm sure you'll find these folks helpful - they sure got me through some bad stuff.
Aneta, what a way to start a cycle! Experiment with the caffiene levels - we all react differently. For me, coming down from a hefty caffiene buzz will give me a super bad hit. No caffiene didn't work either - I was dealing with milder hits all day long. For me, it seems that a little bit can get me through the day, with only a moderate hit at home where I can deal with it.
Try Oxygen. Read up on it. A lot of O2, right away at the first hint, and for about 20 minutes does wonders for me. It probably knocks a point or two off the Kip scale, and shortens the duration, no rebound.
Before I got hooked up with O2, I found brisk walking helped some. I got to know my neighborhood well and lost a few pounds.
May your hits get lighter and your cycle be short.
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Jon
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Aneta
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Re: My fist post
« Reply #10 on: Jun 29th, 2007, 7:33am » |
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Jon- your in Michigan City also? I'm on Wabash & 9th
I'm going to get a welders o2 this weekend, & am looking for a dr. near by.... my dr. was in Chicago & I haven't been there in 2-3 yrs.
I'm getting hit at night now.... almost exactly 2 hrs. after I lay down it wakes me up.... 1 hr. CH then back to bed, 2 hrs. another wake up call, and so on- 3-5 hits during the day also. Maybe since it's starting out so strong it won't last as long. Ice is no longer my friend either, now it seems to make it worse.... just when I thought I knew him, he (ch) changed on me.
Thank you guys for all your advice! PF wishes to all of you wonderful people. Aneta
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pattik
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Re: My fist post
« Reply #11 on: Jun 29th, 2007, 1:09pm » |
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Hi Aneta. You mentioned considering alternatives a couple of times in this thread. You may want to consider RC seeds or Hawaiian Baby Woodrose seeds. There are many threads you can research here at CH.com, and a recent testimonial is here:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1183135704
If this is something you might consider, you can get lots of good information on the Clusterbuster site:
http://www.clusterbusters.com/faqlsa.htm
Good luck with your searching.
Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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GrandPotentate
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Re: My fist post
« Reply #12 on: Jun 29th, 2007, 10:28pm » |
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Wow Aneta - there's probably not many of us around here in MC. I had an excellent and understanding GP at the clinic, but he was suddenly off the staff and replaced with an ignorant and arrogant jerk who really did not understand the thing. This was a week before a cycle. I battled him for sometime, and finally got to see a neuro about two days after cycle. We had a good chat, he seems to know what's up with CH. We agreed to meet next spring, just before the usual onset. Seems pretty weird to schedule an illness 9 months in advance. I'm not sure if he'll be great, but he is the best I've found in MC. See if you can get in to see Dr.Katariwala - he's in the book.
I was disappointed that I couldn't find any referrals through this site. The best referral I found was on the ouch site for a guy in Merrilleville. I don't trust myself to drive out of town while in cycle, and even riding during a hit (or a hit while riding) is extreme hell.
I can't help you on a source for the oxygen - I got some from Alicks. I did find the clustermax preferable over their setup. It worked for me - my log showed a downward step in frequency, intensity, and duration of each hit. It doesn't work for everyone, but seems to help many of us.
I hope that you can get some help faster than I did.
Let me know if you know any good GP's.
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Jon
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Aneta
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Re: My fist pos
« Reply #13 on: Jul 2nd, 2007, 8:53am » |
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TY Pat for the links, they are very helpful. I believe that I will be going the alternative route this time around. I was able to get medical O2 yesterday I got 2 nice size bottles from a friend who was not using them, as they have a machine in there home & more then enough bottles to travel with. At least I can try it out to see if it will work for me... it sucks not having any insurance!!!
Has anyone had this happen to them? I had a tooth pulled last Thursday & the doc gave me a script for Vicodin. Before I was diagnosed with CH, I was given codine ALL THE TIME....& of course it NEVER did a darn thing. I did get the script filled, but was hesitant to take the Vicodin (I just didn't want to make things worse). I did end up taking one Friday morning & got a CH about 30 min. later, it lasted 90 min. but the strange thing was... I did not feel the normal pain, I felt the stabbing but it was dull, my eye was running, & I could tell that the pain should have been really bad, but I could just lay there (very strange, as usually I rolling around & banging my head, screaming). I did have a few more CH's that day & did not take anymore Vicodine. I took one before bed & slept all night & have not had a CH since Friday.... Usually when I'm in a cycle, I do not get breaks of more then a few hrs. until the cycle ends... but I have 3 great PF nights now.... Maybe the Vicodine is to contribute? Gust wondering if this has happened to anyone. Aneta
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GrandPotentate
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Re: My fist post
« Reply #14 on: Jul 2nd, 2007, 7:17pm » |
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Wow, that's great! My cycle ends with a couple of random sputters, let me know how yours works out.
If you are so inclined, and PF for a week, perhaps a beer test is in order.
Jon
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Jon
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thebbz
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Re: My fist post
« Reply #15 on: Jul 2nd, 2007, 8:21pm » |
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Clustermasx.com  Get one.
Hi there
all the best
and what they said too.
jb
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