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Baron

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Baron from Louisiana
Jun 23^rd, 2011 at 4:48am

Hi my name is Baron. I've been reading these message boards for years as a guest and decided to register. I was diagnosed 11yrs ago in NY and I currently live in Louisiana. I just wanted to thank you all for the great information that you provide! I have tried several medicines in the triptan family over the yrs, but nothing helped with any consistency. I currently use oxygen thanks to y'all and its the only thing that really helps. I do need to get an o2ptimask because I hate the disposable mask that I have. I am currently in the 3rd week of this cycle and having about 2-5 per day. I am my own boss now because I have lost every job I've ever had due to CH. I have done lots of research on CH, but any advice y'all might have would be greatly appreciated. It is becoming difficult to keep my appointments at work due to a lack of sleep. I do not have insurance so I rarely go to drs. anymore. It is too expensive and the results don't match the cost!

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Baron from Louisiana Reply #1 - Jun 23^rd, 2011 at 6:46am *This Topic was moved here from Getting to Know Ya* by Guiseppi.**
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Guiseppi

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Re: Baron from Louisiana
Reply #2 - Jun 23^rd, 2011 at 6:51am

Welcome to the board Baron, I moved your post down here where more people are likely to read it and respond to you! Have you had any luck using preventative meds? Verapamil, Lithium or Topomax? Have you tried combining an energy drink with the oxygen? I drink a Red Bull while aborting with 02, it speeds the abort and tends to push back the next attack several hours.

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I don't know if busting would be an option for you. Non mainstream stuff that's given lives back to some of our people for whom nothing else was working.

Go to the meds section, there is a topic "123 pain free days and I think I know why" It's a vitamin and mineral supplement, all over the counter stuff, that's really helping a lot of people on the board. Cheap and certainly worth a shot. Welcome home.

Joe

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Baron

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Re: Baron from Louisiana
Reply #3 - Jun 23^rd, 2011 at 7:17am

I have never been on any prevention meds, just abortives. I have tried red bull, and it does help but I try to use ice tea at night. Energy drinks in the day time are great, but most of my CH are at night and I have trouble sleeping after the second one. I will definitely check out the vitamin routine and thanks again! Oh, and by the way is soreness and tightness in your chest normal after oxygen treatment? I've only been on oxygen for a little over a week.

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wimsey1

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Re: Baron from Louisiana
Reply #4 - Jun 23^rd, 2011 at 8:18am

No, soreness and tightness in your chest is not normal with O2 breathing unless you have somehow strained, pulled or in some other way damaged a ligament around your rib cage. You know, more than a decade is a long time to go without seeing a doctor and I get you do not have insurance, but the best interventions are only going to come from a Dx. You can check out clusterbusters. But I would really encourage you to find a way to see a doc. Blessings. lance

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Baron from Louisiana Reply #5 - Jun 23^rd, 2011 at 10:35am It would be helpful if you would list meds, dosing, duration of use, that you have used. It's difficult to make focused suggestions when we are starting from ground zero.
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Guiseppi

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Re: Baron from Louisiana
Reply #6 - Jun 23^rd, 2011 at 11:16am

Lance and Bob make great points. If you could recall what type triptans you used in the past, and their delivery method, oral pills, dissolve under the tongue, nasal spray, injector etc., it'd give us a better idea what suggestions we should be throwing out.

And as far as recent developments in CH. Hell yes. In the early 1980's, I was using oral cafergot, nasal lidocaine drops, and fiorinal. That was my arsenal against the beast and it sucked. He routinely had his way with me.

Now a cycle starts. My wife calls Apria and loads us up on full E-Tanks, I go on a 10-14 day prednisone taper which keeps the beast at bay while I also start my prevent, lithium. The prednisone will keep me pain free while the lithium builds up in my system. By the time the prednisone taper is at zero, I'm at 1200 mg a day lithium, which blocks 60-70% of my hits. Oxygen with a red bull chaser handles the majority of my attacks in less then 10 minutes, typically 6-8 minutes. No more headache hangovers, no more 90-120 minute rock and roll battles with beasty.

I keep imitrex injectables for the rare occasion oxygen isn't working or when I get caught away from my 02.

Everything I mentioned above requires a doctor. There is just so much available now, I hate to see you battling the beast unarmed.

Joe

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Baron

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Re: Baron from Louisiana
Reply #7 - Jun 23^rd, 2011 at 9:34pm

Thank you Joe, Bob, and Lance! When I made my first post I was in pain and a little vague so I apologize for that. I first started on zomig 2.5mg orally disintegrating tablets, then It was a anti inflammatory pill/ caffeine combination I don't remember the name of. I later switched to max alt, and then immitrex. I tried the nasal spray and the shot once each but felt like my chest was going to split open so I never tried them again. I stayed with max alt for a few years, but would max out on the amount allowed in 24hrs and fight the rest unarmed. I used hot steam and showers for a while but that stopped working. I didn't mean to sound like I hadn't been to the Dr in 11yrs, I do go to see one, I just don't run to one all the time anymore. When I do go to the Dr I see a PA and a respiratory therapist (one person). He seems to try to help me more than a lot of the others. I have just found other ways to fight them over the yrs without meds, that seemed to make the pain go away just as fast as the meds did (about 30-45min). The oxygen and caffeine combination I take now does it in about 15min. I just go through a lot of E tanks! (small price to pay for relief). I currently have an upper respiratory infection, and this could be the reason for the chest pain after oxygen treatments, but I don't know. I am currently looking into the omega3 fish oil and vitamin d regimen, but have not started yet.

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aj CH.com Junior Offline I Love CH.com! Posts: 54 Portland Oregon Gender:	Re: Baron from Louisiana Reply #8 - Jun 23^rd, 2011 at 10:31pm I have very mild asthma and long runs on the oxygen can make it flare up a bit. I imagine it may be the same with your infection...
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wimsey1

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Re: Baron from Louisiana
Reply #9 - Jun 24^th, 2011 at 8:45am

Good news that you're seeing at least a PA, but neither the PA nor the Respiratory Therapist are likely to know much about CHs. It's up to you to either secure an appointment with a headache specialist, or educate the docs you now see, or suffer needlessly. I say that because you need the benefit of a rather complete arsenal, and those come through Rx. Take the O2. Some docs, including respiratory therapists, can have an inordinate fear of O2 in high doses. We need O2 flows of at minimum 15lpm, and it is hard to achieve an abort at that level. Most of us find highest effectiveness at 25lpm or greater and that will require a special regulator.

Take the time to research this site thoroughly. Take notes. Look for what is working as an abort and as a prevent. Note and print articles listed that include research. Ask questions. The sooner you do this the quicker you will be on the way to much less suffering. Good luck, happy hunting and God bless. lance

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Baron CH.com Newbie Offline I Love CH.com! Posts: 4 Louisiana Gender:	Re: Baron from Louisiana Reply #10 - Jun 25^th, 2011 at 3:41pm Thank you Lance, I appreciate you taking the time to write back. I am currently trying to find a headache specialist in my area, and hopefully it will help. Until then I will continue reading and getting more o2.
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Re: Baron from Louisiana
Reply #11 - Jun 25^th, 2011 at 3:57pm

Hi Baron and Welcome.

I did a little digging for you...not sure what part of Louisiana you are in but these guys seem to have a bit of a handle on CH from what I've read.

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Read through some of their CH Treatment medications at the bottom of the page:
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Good Luck!

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