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mommapam

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Goodlettsville, TN
Gender: female

Wanted to say hello~
Jan 28^th, 2011 at 4:36pm

Hi everyone.

My name is Pam, and I just turned 40. My Neurologist actually suggested I look for a forum to give me some other perspective about these clusters, as I am pretty sure I'm at the end of my sanity rope.

This past week marks the 3rd year I have experienced cluster headaches, although my pattern doesn't seem to be nearly as bad as what I've read others go through. Mine only last around 13-17 days, and only at nite while I'm sleeping. They actually start, like CLOCKWORK, at 12:35 AM and last 1 hour and 45 mins. My breaks in between are right at 5 months. So in the large scheme of things, why do I cry about 13-17 days worth when I have such a long break? I chant that to myself every nite I get one, but it doesn't help. Nothing helps. Nothing at all.

I had my first migraine at the age of 9 and they've never stopped. Currently, I am taking Treximet and Topamax, which do absolutely NOTHING for a cluster, as my doctor had warned me. I think I would rather have a "normal" migraine ten times over a cluster any day of the week.

I am married and have 2 boys. They try to help me as much as they can, but they really just don't get it. My husband just wants to ask me a hundred questions during an attack...bless his heart.

Anyway, enough rambling, just wanted to say hello~ Thanks for reading.

Pam~

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https://www.facebook.com/PamelaBrociusPhillips

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Wanted to say hello~ Reply #1 - Jan 28^th, 2011 at 4:48pm Hi Pam!!!! Pull up a chair, girlie.... You've got some reading to do. Ask your doctor about oxygen. It can abort your HA's, if used correctly, in a very short time. There is no need for you to suffer that long. I can be pain free in five minutes using it. It truly has changed my life. Jeannie
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erk

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bunker hill , west virginia
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Re: Wanted to say hello~
Reply #2 - Jan 28^th, 2011 at 5:02pm

Hi Pam,
I am new here as well. There is a wealth of knowledge on the site and many friendly people to help. I have been a sufferer for 10 yrs. myself, having similar episode durations to you, and I get almost exclusively hit after going to sleep too. I take imtrex injectables for my ch's, I am not familiar with your meds but I'm sure someone else here will be. I am currently in the worst episode I've ever had (over a month now) and getting hit during daytime some also. Energy drinks (red bull, monster, etc.) have been able to abort most of the day time attacks and using only 2mg imtrex have stopped night timers (learned both tips from site). If you don't know by now, most on the site swear by O2 to abort. This is something I'm hoping to talk my doc into at my next visit. Well just wanted to say hello and welcome aboard.

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Wanted to say hello~ Reply #3 - Jan 28^th, 2011 at 5:15pm Hi Pam and a very warm welcome! I must say you have a 'head' start having a 'switched on' Neurologist! Knowing that someone is suffering more than yourself does not lessen YOUR suffering but, knowing you are not alone in this suffering, does! Lots and lots of great people here for you Pam. Best wishes Gary
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Wanted to say hello~
Reply #4 - Jan 28^th, 2011 at 5:53pm

Hi Pam

It sounds like you've got no effective treatment at all for your CHs and are having to ride out every single one, which we all know is torture.

With such a short cycle most of the standard preventives like verapamil will take too long to build up to an effective level, but you should be able to make use of a prednisione taper (starting at about 60mg a day and decreasing over the 17 days). This will prevent many of your CHs from happening. You don't want to be on prednisione for much longer than that, but it should be fine for your short cycles.

As people have mentioned, oxygen is great for aborting CHs. Read all about it via the link on the left and see how we are aborting CHs in minutes instead of going through the hour or more ride.

Another alternative is to use imitrex as an injection which can also be effective in a few minutes, but it is more expensive and has side effects compared to oxygen.

For night time hits, many people are getting relief using melatonin (about 9mg).

Using a combination like this should make a huge difference to how CHs are impacting your life.

Also avoid alcohol during your cycle as for most people who are episodic it's a trigger.

Keep reading and ask your husband to read too. There are many supporters who are here who can answer his questions.

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mommapam

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Goodlettsville, TN
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Re: Wanted to say hello~
Reply #5 - Jan 28^th, 2011 at 7:35pm

Wow....thank you all for the reply! So much good information, and knowing there are some options is huge to me. I have read a lot about O2, and I've also seen videos on YouTube where it has been used, so I'm going to talk to my doc.

I'm really relieved to know I'm not crazy afterall. LOL, you have no idea!

Thanks again everyone~

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Guiseppi

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San Diego to Florida 05-16-2011

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SAN DIEGO, CALIFORNIA USA
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Re: Wanted to say hello~
Reply #6 - Jan 28^th, 2011 at 8:17pm

So in the large scheme of things, why do I cry about 13-17 days worth when I have such a long break? I

Because a single CH SUCKS. Cry

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Read this link, print out the info and take it to your doc. Topomax is actually a commonly used prevent for CH, but with as short as your cycles are, I'm with Mike. Prednisone, at levels as low as 30 mg a day for me, will block 100% of my attacks. You cannot take it long term because of potential side effects. But as short as your cycles are, it's an option your doc really needs to explore.

Welcome to the board, continue reading like crazy. An educated Ch'er hurts a lot less. Wink

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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bejeeber

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Gnashville
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Re: Wanted to say hello~
Reply #7 - Jan 28^th, 2011 at 9:46pm

Sorry to hear you've been suffering needlessly like that! Shocked

Now if talk to your doctor about O2, don't expect him to be informed about it. Doctors generally aren't. But if you can get any kind of prescription for O2, like the old old old school version doctors still like to prescribe, which is low liter flow with canula, that can still work, because once you get the O2, you can decide to procure and use a non rebreather mask on your own, and same goes for a high flow regulator if low flow isn't working for you.

Since your episodes are 13-17 days, I can see why folks will recommend prednisone. Word of caution though: Some (not all) CH'ers believe that prednisone sends their intensity level through the roof after they've tapered down from it, and that it can extend the length of your episode. After several years of CH episodes I was put on prednisone and this happened to me. I can't say for sure the prednisone was resposible for taking my CH to a whole new, never before imagined level, but I have my suspicions.

Yep prednisone is a tricky one, because it holds the possibility of stopping your attacks cold, but is also IMO easily the most danderous drug we are prescribed (it's extremely harmful in myriad, permanent ways if one stays on high doses for extended periods, which I doubt anyone will suggest you do).

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« Last Edit: Jan 28^th, 2011 at 9:50pm 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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deltadarlin

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I love YaBB 1G - SP1!

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Downsville LA
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Re: Wanted to say hello~
Reply #8 - Jan 29^th, 2011 at 10:52am

Pam,
Sorry about the ch., but glad you found us here. Just as a note, we will be having our annual OUCH convention in Nashville, TN July 15th and 16th. We haven't worked out all the final details yet, but we will be there and it will give you a chance to visit with other clusterheads and listen to some speakers.

Join OUCH, it's free

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Carolyn~ak~deltadarlin

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mommapam CH.com Newbie Offline Posts: 7 Goodlettsville, TN Gender:	Re: Wanted to say hello~ Reply #9 - Jan 29^th, 2011 at 2:49pm oh that's excellent Carolyn...I will join and would love to go! thank you!
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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: Wanted to say hello~ Reply #10 - Jan 29^th, 2011 at 4:05pm You will NEVER regret attenidng any of our conventions or fly-ins. So excited you'll get to attend this one!!! Joe
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Wanted to say hello~ Reply #11 - Jan 29^th, 2011 at 4:53pm mommapam wrote on Jan 29^th, 2011 at 2:49pm: oh that's excellent Carolyn...I will join and would love to go! thank you! YES! We'll be anxious to meet you!
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Wanted to say hello~ Reply #12 - Jan 29^th, 2011 at 5:48pm Jackie wrote on Jan 29^th, 2011 at 4:53pm: mommapam wrote on Jan 29^th, 2011 at 2:49pm: oh that's excellent Carolyn...I will join and would love to go! thank you! YES! We'll be anxious to meet you! You'll have the best time!!!! These are the greatest bunch you could ever meet!
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mommapam

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Posts: 7
Goodlettsville, TN
Gender: female

Re: Wanted to say hello~
Reply #13 - Jan 30^th, 2011 at 8:20pm

I'm looking forward to meeting everyone that knows what I'm going through and understands. Last nite was rough. I honestly got scared. I'm laying in bed now too afraid to close my eyes. I have only 3 treximet left and (my husband was laid off in November), and I no health insurance.

A co-worker told me she doesn't think any headache could make her wish for head to just explode and get it over with. I just smiled and said...be thankful you really don't know that feeling.

Just wanted to share. I hope everyone has a resful nite

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his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Wanted to say hello~ Reply #14 - Jan 30^th, 2011 at 8:27pm Have you tried melatonin for night hits? 9mg an hour before bedtime helps many with those. Then tweak up as needed (hubby went up to 15mg) Looks like you are working on getting the O2...hang tough...hoping you get some rest tonight.
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bejeeber

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Gnashville
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Re: Wanted to say hello~
Reply #15 - Jan 30^th, 2011 at 9:54pm

Treximet...hmmm so are you taking those right when you are awakened by the CH hit?

Just wondering, because I've seen a few others who have reliable wake up hits an hour or so after going to sleep report actually using imitrex pills (which are like treximet but without the naproxen) as a preventative right before bed with success.

I'm not going to outright suggest you try that, because I'd loathe the idea of sending anyone on a bum steer with something so critical as this, but thought I'd mention it, especially since imitrex pills are known to be too slow acting for CH, in contrast with imitrex injections, which will knock a hit out in a real jiffy.

Also, I'm just now slowwwwly catching onto the fact that you're in the GNASHville area Cheesy

- DOH! please check your PMs about local O2 possibilities.

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« Last Edit: Jan 30^th, 2011 at 10:43pm 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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