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echogirl

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Living in pain
Dec 4^th, 2009 at 4:03pm

I'm new to this place, just joined today. I just wanted to vent a little, and maybe get some helpful feedback, althoug I lost all optimism. I'm a 29 year old female who has been suffering fro CH's sinc I was about 13. Over time the headaches just increase in intensity and frequency. In fact, I usually get them late spring,early summer, but I felt as if one is lying in wait for the past couple of days. I can't even express how much it would suck to get them in the winter, too. Dreading the summer was bad enough. I still haven't found anything that relieves them even a little. I tried several different meds. I also tried the water therapy technique...to no avail. In fact I ended up getting water intoxication from drinking too much water. I mean, I beacame ravenous, hoping it would rid me of this hell I go through, but I ended up sick from all of the water, and a ch from Hell. Haven't tried oxygen yet. I got permission from my Dr. that I could try O2 treatment during my next bout, but I need to go in for it. Problem is that my family Dr. doesn't have any on hand, so I guess I'm gonna need to go into the ER. I do not look forward to that. I could only hope that they treat me right away. What good would it be if I had to wait an hour or 2. By then it could be gone, and I'll never know if it works or not. They did say they would give me a script for O2 if it does work. I am just so frustrated. Some encouragement,please!

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Joni

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Re: Living in pain
Reply #1 - Dec 4^th, 2009 at 4:23pm

I am so sorry for your discouragement...I totally understand. I didn't hear you mention a prevenative medication like Verapamil, Topamax, Lithium, etc. I take Verapamil. I also didn't hear you mention an abortive as with Imitrex, Zyprexa (what I take), Zomig, etc. You did mention O2 and many people here love it, but I am unfamiliar with it so someone else will come along and talk to you about that. But I can already tell you that they will say it will not be worth the trouble of driving somewhere to get it each time as it will be way too late for the headache. It sounds like you need a headache specialist! Don't get too discouraged because you have a lot of things to try, still. Until then, get some energy drinks like Red Bull and chug one at the onset of your headache. People here also take Melatonin at night, which you can get now. Read the info and posts here and you will get good tips!!!

Good luck!
Joni

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Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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angela.lambert

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petersburg,alaska
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Re: Living in pain
Reply #2 - Dec 4^th, 2009 at 6:09pm

Hello Echo!!

When I read your post, I thought I was reading my first post from 2004. We have very similar stories.

I have been steadily getting worse in intensity and duration. I had seen doctors here and there since 1992, had a MRI scan to rule out something more sinister and my dentist made a bit for me cause he thought is was TMJ headaches. I finally threw the towel in in 2004, I was so beaten down by the pain, I went to the ER for the first time. A few doctors later, I was put on a regiment for treating CH's. I aborted my first headache!! WhoHoo!! I have O2, Verapamil, Imitrex, Melatonion, and lots of water-(I heard not for you) to get me through my cycles. And most important: I got this forum!!

Finding the right doctor can take years. I finally did, then he moved Angry

. Now I go in to an appointment with a "I don't won't accept your migraine crap" and get the rx's I need to make it through a cycle.

GET O2!! I don't bother with a rx (well, there isn't a hospital grade filling facility on the island). I just get welding grade O2, beer regulator 15lpm, and free disposable pre-wrapped non-rebreather mask from the hospital.

Welcome to your new home, where we know ya best Wink

!!!

Angela

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The Beast, the Beast, the Beast is on Fire!

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Callico

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Re: Living in pain
Reply #3 - Dec 4^th, 2009 at 6:17pm

Welcome aboard!

Next time you go to the Dr print out pertinant information about O2 therapy from the link on the left. If you have trouble getting an RX see the post stickied at the top of the Meds page and follow the info from it. There is NO good reason for you not to be prescribed oxygen if you have a valid CH diagnosis. You may have an ignorant Dr, but if you take in the proper info (and he doesn't think MD means God), you should be able to walk out with it. DON'T wait to try and go in to try it to see if it works. If you wait that long into a hit it will take forever to kill it. You need to get it early on.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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remission lover

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wrong girl...I'm a fighter!

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Lansing, Michigan
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Re: Living in pain
Reply #4 - Dec 4^th, 2009 at 6:30pm

Thought I'd chime in for encouragement. I hate to see someone so defeated. We call the attacks "the beast" here and he loves it when you give up so don't let the little bastard win! Everyone is different here on what works for them so just write down the different advice and try them repeatedly until you find what works. I am a big pusher of the oxygen. Again, make sure you know what to ask for specifically by using the links here but I swear you'll be amazed. It's true you have to use it as soon as you feel one coming on but you won't believe the wonders of it. If any doctor or specialist you see isn't prepared with plan a, then plan b and so on, your in the wrong office. Someone with real knowledge of clusters is always prepared to try something new if the last thing didn't work. Some use ice, I like heat. Some use water (not for you), so try the energy drinks. I did for the first time last night and it seemed to knock it down a level or two. Now that your in good hands with us, come back anytime to vent. It helps. I just found this site a couple weeks ago, and I already feel more in control and understood in general. We'll get you through it, I promise.

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Grandma always said "this too shall pass". But then again she didn't have ch so she didn't think to say "this too shall come again (and again) at the most inconvenient times".

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FramCire

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Bolivar, MO USA
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Re: Living in pain
Reply #5 - Dec 4^th, 2009 at 6:54pm

Let's get rid of the discouragement and rid of the fear.

1. GO get the script for O2. Might as well have it on hand when the next headache hits. Get yourself a NON-rebreather mask (OR buy a mask from the store here) and fill the script.

2. Go get yourself an energy drink with taurine!!!! Have it cold and ready to down for the 1st headache that your O2 doesn't hit!

3. DO NOT WORRY about the next hit! Get your meds and abortives ready for the next hit and then FORGET ABOUT IT. Worry and anxiety will only make your pain free time worse than it should be.

Enjoy your PF days, have all your stuff ready for the next hit, and don't look back!!

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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Mac_Muz CH.com Old Timer Offline new hampster "eat seeds or die" Posts: 432 Tamworth New Hampster Gender:	Re: Living in pain Reply #6 - Dec 4^th, 2009 at 7:19pm I found your other thread first.... Get O² If you must get it from a welding supply house. Going to ER is nuts. Demand O² from your doctor, or Fire Him.. O² must be with in your reach the first instant you know an attack is coming. My O² is out in the barn and late in night there is hardly time to get dressed, and out there...
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void

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Re: Living in pain
Reply #7 - Dec 10^th, 2009 at 6:33pm

I did not have recipes for abortive/preventatives when I got hit this summer. This time I avoided the general practioneers and went straight for a doctor I knew before-hand to be knowledgable. That meant I had to wait for an appointment for quite some time.

I wasn't really sure how I was going to cope waiting, and was pretty terrified and sort of down. Anyhows, we have these zomig nasal sprays without recipe. I tried them and they worked very well. I still had quite much pain, but it took it down a few notches.

From what I´ve read here the efficiency of such a thing as Zomig is very different from case to case. So it might not work for you, otherwise I would suggest that as a stop-gap solution until you can get oxygene or other professionally prescribed meds.

Good luck with the doctor-hunting.

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Marc Ex Member Gender:	Re: Living in pain Reply #8 - Dec 10^th, 2009 at 8:40pm Zomig requires a prescription.
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void CH.com Junior Offline Never stop moving. Posts: 27 Gender:	Re: Living in pain Reply #9 - Dec 11^th, 2009 at 5:34pm Marc wrote on Dec 10^th, 2009 at 8:40pm: Zomig requires a prescription. Even for the low dosage nasal? We get the OTC here, but you really want a prescription considering the cost and the amount you need - but as a stop-gap it might work. Although, not if theyre on pres. over there.
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Marc Ex Member Gender:	Re: Living in pain Reply #10 - Dec 11^th, 2009 at 11:14pm There are no over the counter Triptans available in the U.S. at any dose.
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BC_Battler

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Stay strong

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x0|West Coast|Canada||0|0|BC,British_Columbia

Re: Living in pain
Reply #11 - Dec 13^th, 2009 at 12:40pm

Hi Echogirl,

Welcome! I am so sorry that you are having a hard time. Like you, this has been a brutal year for me, and is only getting worse. My life is getting harder and harder to manage. Even so, I am eternally grateful for my friends and family, who have stood by and supported me. The people here are amazing as well, and I've found that no matter how bad it gets, there will always be a tomorrow - and with it the hope that things will improve.

You obviously are an amazingly strong person, to deal with these for so many years. Discouragement is inevitable, but just know that even if you get hit with these more frequently than you have in the past that you'll win that battle, hands down.

The advice given above above about how to deal with the beast is great, so I won't add to it, but please just know that you're not alone.

Take care,
Paul

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