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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New to the site

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New to the site (Read 1192 times)

Jarot48 CH.com Newbie Offline I Love CH.com! Posts: 10	New to the site Jun 6^th, 2009 at 9:18pm Hello all, I'm new to the site. I look forward to learning more about my condition and all the feedback the board provides. More than anything I look forward to making new friends who understand what it is to have CH's. J
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Linda_Howell

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Re: New to the site
Reply #1 - Jun 6^th, 2009 at 10:01pm

Well darn then....you have sure come to the right place then my new friend.

Take a seat, ask questions and know that you are with "family" here who understand.

Tell us more about yourself and your experiences with CH. When did they start, how long before you were diagnosed, do you have a good Dr. or an idiot (like a lot of us here have experienced) what meds have you tried, what worked, what hasn't.

You've also got a lot of reading to do..links to the left. Wink

Linda

Hurt people.....hurt people. Think about it.

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brenda182 CH.com Newbie Offline Posts: 5 Brockton,MA Gender:	Re: New to the site Reply #2 - Jun 6^th, 2009 at 10:43pm I am new here as well...looking forward to any advice and comments you may have for all of us newbies...have dealt with this beast for about 28 years now. The last 1 1/2 I thought I broke free somehow...couldn't be so lucky...HE'S BACK!!!!
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Jarot48

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Re: New to the site
Reply #3 - Jun 6^th, 2009 at 10:46pm

Hi Linda,

Nice to meet ya'!

I had my horrible headaches for some years now but was too hard headed to go see a doctor. After years of just "dealing" with the pain, I decided to see a doctor. I was referred to a neurologist who diagnosed me with CH's. He seems to know what he was talking about and all of my symptoms (severe pain on the left side of my head above the eye, red crying eye, etc). I usually get them at the same time of the day, I could tell you within minutes when they are coming. I, however, go months without getting them and then BAM here they are for weeks. He currently prescribed Zomig to me and it seems to work although it takes quite some time to react.

I see there is tons of literature here for me to learn and maybe see if my doctor can prescribe something that works quicker. Sometimes I just feel like punching my head for the pain to go away if that makes any sense. Anyways, thanks for listening. I will see you around the site.

J

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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: New to the site Reply #4 - Jun 6^th, 2009 at 10:46pm What Linda said! Welcome to the board, we do understand, and you will not find a more comprehensive knowledge source on CH anywhere in the world!!! So glad you found us! Joe
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Jarot48 CH.com Newbie Offline I Love CH.com! Posts: 10	Re: New to the site Reply #5 - Jun 7^th, 2009 at 7:08am Thank you all for the warm welcome. I been reading on the oxygen topic but I will be honest and say that im a little hesitant to try it for now. I want to find a medicine that I can transport and take with me to work and travel. The oxygen, however, may be an excellent alternative to keep at the house.
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Val_

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Re: New to the site
Reply #6 - Jun 7^th, 2009 at 11:35am

Hi there!!

You mention Oxygen... It is an abort that Many here use - My Favorite abort. It works most of the time and NO side effects - YEAH!!! I have never used Zomig, but it's a triptan if I am not mistaken, and most have the possibility of having rebound HAs, as well as some side effects and restrictions of use. I tried eletriptan, have used rizatriptan for migraine, and have sumatriptan injections as backup for clusters, am familiar with side effects and restrictions - so many mgs per day, etc...

Oxygen - I have a larger O2 tank at home, a smaller one at work, and one in the car (with some extra smaller ones to swap out those when empty.) They are semi-portable, and convenient! I have been told that my O2 supplier will even send tanks to my travel destination when I fly, as you cannot bring them on the airplane. I understand many larger companies have similar policies.

Truly think about giving it a try - Oxygen is a Great abort for me, and if it works for you - why stick with the drugs as your only option? Wink

Have you considered a preventative drug for while you are in cycle? Many people who opt to use medications work with their docs to try something - verapamil, lithium, topamax, or some combination thereof to prevent headaches during cycle. I am on a higher dosage of verapamil than my neurologist was ready to prescribe - had to go to a Headache Specialist to get it right. I'm taking 720 mg/day, and my HAs went from 3-4/day to every couple of days!! Cool

I just have to have an EKG when the dosages of Verap are changed at that high level. All of these meds at higher levels have specific reqs - lithium you have to do blood tests, etc.

Anyway, a few things to think about - But keep O2 in mind. Smiley

Val

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: New to the site Reply #7 - Jun 7^th, 2009 at 9:47pm welcome. Coach Bill
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