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kelkel789

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Newbie and frustrated
Nov 20^th, 2009 at 5:37am

Hey All!

Kelly here. Just found this site for the first time....THANK GOD!!!!!! I wish I had found this a year ago with my first attacks. My first attacks were so debilitating, I thought I was dying or thought for sure I had a tumor or something of the sort. After lumbar punctures, many different doctors and many different meds and so many trips to the E.R. I was finally diagnosed at a headache clinic. I suffered for about a year and they fianlly went away (after gaining nearly 30 lbs from being on Lithium).
I was so thankful to not be in the DEMONS possesion anymore. I was scared daily that they would come back.

They did not untill... two weeks ago. I am so frustrated with this whole CH deal!! I was seriuosly hoping I would be one of the few cases that had a one time spell (so much for wishful thinking)!
I am now back at the HA Clinic and I am abot to go back to ocipital nerve blocks and try a new med for me(topamax).

Has anyone had luck on Topamax?

Long story short I am so very happy to have found this site and people to talk to! I amlooking forward to reading allof the wonderful and insightful info! Thanks again for being here!

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barry_sword

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Re: Newbie and frustrated
Reply #1 - Nov 20^th, 2009 at 6:35am

Hi Kelly and welcome. You are not alone with these anymore. Sounds like you have a good doc, that is the biggest part of your battle right there.
Did he/she discuss oxygen to abort a CH? Works for most of us here and no side effects.
I do not know anything about Topamax, I have never tried it.
Read all the info to your left and do not be afraid to ask questions.
Nice to meet you.

Barry

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bejeeber

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Re: Newbie and frustrated
Reply #2 - Nov 20^th, 2009 at 10:15am

Hi Kelly,

Your doc might discuss O2, but I'm guessing its unlikely you'll be instructed how to use it in the manner that's most likely to actually work.

That would be found here: Cool

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« Last Edit: Nov 20^th, 2009 at 10:59am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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kelkel789

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Re: Newbie and frustrated
Reply #3 - Nov 23^rd, 2009 at 4:37am

Hey there Barry and mr o2 (lol).

Thank you for the advice.
I have tried the o2 last yr whe my attack were really bad. Unfortunately for me it did not work well ( I wish it had)!!
So far so good with the Topamax No side affects yet. But will need 2-3 wks to build up a good amount for it to work against the headaches. I did have to resort to am Imatrex injection today. ( I was a lil discouraged by that)
But I have to do what I have to do!

Hope all is well with you guys! And once again so happy to have found this this site!

Kelly~

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Lefty

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Re: Newbie and frustrated
Reply #4 - Nov 23^rd, 2009 at 6:28am

kelkel789 wrote on Nov 23^rd, 2009 at 4:37am:

I have tried the o2 last yr whe my attack were really bad. Unfortunately for me it did not work well ( I wish it had)!!

Hi Kelly and welcome to the site. As you can see from the majority of post on this site we are all big advocates of 02. That's a bit of a bummer that it didn't work for you, but hey, that's been known to happen. Can you tell us what lpm you were using and what type of mask. I know some guys on this board obtained a successful outcome when they increased there flow rate to 25lpm+.

Lefty..!

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angela.lambert

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Re: Newbie and frustrated
Reply #5 - Nov 23^rd, 2009 at 12:21pm

Hello Kelly,
I didn't have success on Topo, but I do on Verapamil (320mg). Also, check out the imitrex tip: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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I just started using it and it is great! Giving yourself a shot really isn't that bad, the auto injector is more painful I think. The dose is smaller, but it sure kicks the headaches ass still!!

PFD,
Angela

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

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Billiam

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worcester ma
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Re: Newbie and frustrated
Reply #6 - Nov 27^th, 2009 at 1:12pm

Hello Kelly,
I had very bad time on Topamax made me way to out of it to even function but hopoe it works for you if it doesn't depakote worked well for me of course untill this year I was four yrs PF and they are back kickin' my arse well heres to you and hopeing the best for you. I will be switching meds soon to Keppra because my CH is back and my seizures are undercontrol so my neuro wants to try something else because the Depakote has also started to give me bad tremors can't write or hold anythiong steady anymore

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Joni

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Re: Newbie and frustrated
Reply #7 - Nov 27^th, 2009 at 2:49pm

Kelly-

I have to agree with the others...I will not use Dopamax, oh excuse me, Topamax! My family, including me, have found it to be too debilitating intellectually. I think some people here feel the same way. I am sorry to be negative, but I want to tell the truth. Verapamil does not have those side effects and is very popular if you find that you need a change...unless you have really low blood pressure as it is a blood pressure med. I hate to see you on Topamax, but everyone is different and I am hoping you are one of them.

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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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: Newbie and frustrated Reply #8 - Nov 27^th, 2009 at 7:12pm Welcome, During my last cluster cycle my doctor gave me topamax. I was on it for about a month, and after two weeks the topamax wore me big time side effects. I was able to tone off it and jump on the 02. Again welcome. Coach Bill
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kelkel789

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Re: Newbie and frustrated
Reply #9 - Dec 2^nd, 2009 at 5:14am

Lefty,

I had two tanks I was 40L with a non rebreather (one tank on 25% and the other tank on 15%). I WISH IT HAD WORKED FOR ME! I work in a hospital as well so when my Ch came back this time that was the first thing I tried while at work and unfortunately I had the same out come.

***********UPDATES************

I have been on the Topamax for two weeks now. I am up to 50mg daily. I take it befor bed. I had zero side effects on week one at 25mg a day now on week two I am having tingle sensations in my limbs and my nose as well as occasional dry mouth. I am trying to drink a lot of water to avoid kidney stones. I am also very mindful to watch for any "dopamax" effects.
As far as the Ch's go they have subsided greatly! I am down to only 2 so far in the past week and they were very mild and quick! (I was having 3-9 per day) I am pleased so far. I will keep you posted with any changes good or bad. I Thank you again for all the advice!

Angela,

I do have the Imitrex injections as an abbortive as well. I agree I like those too Ty!

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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: Newbie and frustrated Reply #10 - Dec 2^nd, 2009 at 1:21pm Angela that's great news! A lot of people have bad side effects from Topomax but others on the board swear by it. Hoping you continue the positive effects with no side effects! Joe
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angela.lambert

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Re: Newbie and frustrated
Reply #11 - Dec 2^nd, 2009 at 3:23pm

I'm so glad that Topo is working for you. I went "funky" on it. That is the only word that fits it for me.
Funny, I just got a call from the clinic here in Ptown, and it was a nurse asking how many Imitrex injections I use in a 90 day period. I was in the shower, so I just got the message. But what do you say. I replied in a phone message too, I briefly explained I only used 2mg of the 6mg. I didn't really have an answer. I'm wondering if there is another Clusterhead in town. On the downside of luck, ~~I hope~~ If so, maybe I can help.

I am so glad you found us Ty!! Be chatting again.
Angela

Edit: I never hope so

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« Last Edit: Dec 2^nd, 2009 at 3:25pm by angela.lambert »

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

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: Newbie and frustrated Reply #12 - Dec 2^nd, 2009 at 4:32pm Hey Kelly- As I was looking at the title of your post today, "Newbie and frustrated," I was thinking...I am an oldie and frustrated. Hang in there...it does get better!!!
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Jrcox

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Re: Newbie and frustrated
Reply #13 - Dec 2^nd, 2009 at 11:44pm

Great news glad your getting relief. I to had the dopomax effect. But I never took it at night. Hmmmm.
I was ordered to take one in the morning and one in the afternoon. As long as I was I was incycle. Then stop after cycle is gone two weeks. Does that sound normal.

Any ways
great news. Always makes me smile I hear a cluster head gets a break from the beast.

Jrcox

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bejeeber

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Re: Newbie and frustrated
Reply #14 - Dec 3^rd, 2009 at 1:27am

kelkel789 wrote on Dec 2^nd, 2009 at 5:14am:

As far as the Ch's go they have subsided greatly! I am down to only 2 so far in the past week and they were very mild and quick! (I was having 3-9 per day) I am pleased so far.

I can definitely see how you'd be pleased so far!! Here's hoping you continue to have those great results.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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