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Kim D

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Nashville, TN
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Ear pain?
Jan 27^th, 2009 at 7:10pm

I'm new to this site, but I'm pretty certain I have cluster headaches. I went to the doctor today and (after 4 years of misdiagnosing) she concluded that I have CH. However, I've been reading on this site and I don't see anything that refers to pain around and in the ear.

When I get a hit, the pain gradually increases behind my ear, and moves inside my ear, probably the same as ear infection pain. This is how I know I'm about to get a headache. At the sign of this pain in my ear, I take some ibprophen, which now I'll take Trexamet (prescribed by my doctor today). After 15 minutes of the pain in and around my ear, it moves to the left side of my forehead, my left nostril gets stuffy, my face feels like its being crushed while my brain feels like its going to explode, ALL at the same time. This lasts for 30-60 minutes, and then starts dwindling. The recovering takes at least 30 minutes... while I wait for the thumping and earache to go away.

Does anyone else have this ear problem? I have all the other symptoms of CH, except my earache. Help.
Sad

Also, does anyone take Trexamet? Have you heard anything about it?

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Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1.

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Re: Ear pain?
Reply #1 - Jan 27^th, 2009 at 7:25pm

Welcome to the ~~nut house~~ family! Sorry you had to join, but glad you found us.

The ear pain is not that unusual. Pain anywhere on the side effected can happen.

Trexamet is a new drug released by the manufacturer to compensate for the release of the patent on Imitrex (or at least I am firmly convinced of that). Several have tried it, but not with much success. The biggest problem is that it is a pill, and pills take too long to get into the system. If you are going to use a triptan, the injectable form of Imitrex is widely used with great success.

A far better (kinder to your body, and much cheaper) method of aborting is pure oxygen. Click on the oxygen info button on the left side of your screen for information. Ask any questions that you may have.

Good luck, and keep us informed!

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Kim D CH.com Junior Offline Posts: 77 Nashville, TN Gender:	Re: Ear pain? Reply #2 - Jan 27^th, 2009 at 7:33pm Since my headaches always come around 9:30-10:30, my doctor told me to take the pill at 9. I've used the imitex injections before, they didn't do much for me... My dad is an emt so i'm going to try the oxygen with my next headache. Meanwhile I'm drinking tons of water and praying. lol. Thanks for your help.
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DennisM1045

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One wave at a time!

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Re: Ear pain?
Reply #3 - Jan 27^th, 2009 at 8:14pm

Hi Kim,

Welcome to your new home. I'm sorry you had to find us but I'm damn glad you did.

I'd be wary of taking a triptan every night. Treximet is designed to abort migraine attacks. Migraine attacks don't typically hit every night like clockwork ... like CH. I've see too many clusterheads get themselves into a very bad place from overusing triptans.

The amount it takes to qualify as "overuse" is very individual. Some folks consume vast quantities without any negative effects. However for some it can cause an increase in the frequency and severity of the attacks. Over time it can lead to the drug becoming ineffective.

I'm one of the 70% of us for whom Oxygen therapy works. For me, and a lot of others, it works almost as quickly as Imitrex injections without all the side effects. Using Oxygen I've drastically reduced my usage of triptans.

I hope it works for you as well as it does for me. Just be sure to read everything under the Oxygen Info button on the left. You have to use it right to get the most value from it.

It sounds like your Dr isn't too familiar with treatment options for cluster headache. The standard medical approach is two pronged and involves abortive medications to kill an attack when it occurs and a preventative that reduces or eliminates the majority of the attacks.

The one truth around here is that no one strategy works for everyone. That makes finding your magic formula a bit of a challenge. So ... take some time and look through the info below. Then print it out and take it to your Dr so the two of you can come up with a good treatment plan.

Remember, you are your own best advocate and knowledge is your most powerful weapon in your arsenal.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Non traditional alternative

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Good luck and let us know how you make out.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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aj

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Re: Ear pain?
Reply #4 - Jan 27^th, 2009 at 9:46pm

I think it depends on how the nerves in your head are routed and what not. I know I have one nerve that makes a bee-line for my penultimate molar on my left side when I get hit, so I have the fun of the spike in my temple *and* a toothache!

I wanted to add re: the injections: don't give up on them. I just tried injections for the first time this cluster - I had been on just the nasal spray before. I'm finding that between the two, I can abort most attacks (yes, I'm still trying to fight out getting some O2, but the Imitrex is what I have to work with for now). The first time or two I tried an injection, it didn't do much, and then a nasal spray helped. The next day, I was at K8 levels, trying to find the nearest urgent care facility that took my insurance, when I said, "screw it" and tried another injection, and the pain was gone in three minutes. Playing between the two, I've gotten sort of a feeling of which headaches at which time will respond to the nasal spray ok (like the one I just aborted an hour ago) and which will need the injection like the one I had to take last night.

Also, like the Dennis mentions, overuse is per person. Only if I've had like four doses in 24 hours do I feel at all "weird." but the pharmacist was saying some people feel tightness in their chest after one shot. Go figure. I only fear the imitrex (like the maxalt and the ergotomine before it) will stop working one day, but it works now and that's good enough for me.

And, I would heavily second Dennis in that you need to be on a prophylactic course of meds - not just taking an abortive as needed. You have CH: headaches will come. You should try getting on some stuff to help stop them from coming and/or lessen their severity. A series of prednisone and verapamil work well for me. If your doc doesn't know much, ask to be referred to a neurologist.

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Kim D

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Re: Ear pain?
Reply #5 - Jan 27^th, 2009 at 10:59pm

aj wrote on Jan 27^th, 2009 at 9:46pm:

And, I would heavily second Dennis in that you need to be on a prophylactic course of meds - not just taking an abortive as needed. You have CH: headaches will come. You should try getting on some stuff to help stop them from coming and/or lessen their severity. A series of prednisone and verapamil work well for me. If your doc doesn't know much, ask to be referred to a neurologist.

Like Topamax or something?

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Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1.

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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: Ear pain? Reply #6 - Jan 27^th, 2009 at 11:04pm Verapamil is usually the first choice for a prevent, lithium is also popular. Topomax is called dopey max by many as some experience the side effect of feeling dopey! The trick to oxygen is get on it as soon as you feel the headache start. If I let the pain get established oxygen loses its effectiveness. Joe
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Kim D

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Re: Ear pain?
Reply #7 - Jan 27^th, 2009 at 11:10pm

Guiseppi wrote on Jan 27^th, 2009 at 11:04pm:

Verapamil is usually the first choice for a prevent, lithium is also popular. Topomax is called dopey max by many as some experience the side effect of feeling dopey! The trick to oxygen is get on it as soon as you feel the headache start. If I let the pain get established oxygen loses its effectiveness.

Joe

I've taken Topamax before but it took like 4 weeks for it to work, and by then I suppose my "cycle" would have already ended. Does the other medicine work quicker?

So I should start the oxygen as soon as I feel the pain in my ear? I suppose that is the triggering part that I recognize. How much oxygen do you go through?

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Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1.

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Kim D

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Re: Ear pain?
Reply #8 - Jan 27^th, 2009 at 11:15pm

DennisM1045 wrote on Jan 27^th, 2009 at 8:14pm:

I'd be wary of taking a triptan every night. Treximet is designed to abort migraine attacks. Migraine attacks don't typically hit every night like clockwork ... like CH. I've see too many clusterheads get themselves into a very bad place from overusing triptans.

The amount it takes to qualify as "overuse" is very individual. Some folks consume vast quantities without any negative effects. However for some it can cause an increase in the frequency and severity of the attacks. Over time it can lead to the drug becoming ineffective.

Another question is what exactly do you mean by trouble? I am seriously afraid to take this Trexamet everyday at 9 because during my last cycle, the neurologist said that if i take it when I don't need it, it can cause "rebound" headaches. Is that what you're talking about? Or is there more that I should know?

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Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1.

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Guiseppi

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Re: Ear pain?
Reply #9 - Jan 27^th, 2009 at 11:15pm

Lithium takes 10-12 days to build up to a therapeudic level for me. I use a prednisone taper to get me by until the lithium kicks in. My cycles usually go 8-12 weeks. I think verapamil is similar in how long it takes to become effective.

I use an E-Tank with a demand style regulator. (Very similar to the style your dad uses, mine's one I scored from an old EMT buddy) I can usually abort an attack with about 3-400 pounds from my E-Tank. I start the 02 as soon as I get the twinge behind my eye. That's my "sign" an attack is coming on.

Joe

Edited to add: The risks of overuse are rebounds and the med becoming ineffective. There are always potential cardiac risks as these meds constrict vessels.

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« Last Edit: Jan 27^th, 2009 at 11:17pm by Guiseppi »

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

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Kim D CH.com Junior Offline Posts: 77 Nashville, TN Gender:	Re: Ear pain? Reply #10 - Jan 27^th, 2009 at 11:22pm I took Depakote for awhile, it didn't do much though. I don't know if that is related to the other medications you suggested. My doctor didn't really suggest anything that I've read on here. I guess if the oxygen doesn't work, I'll go back and ask for something more. All she gave me was a steroid shot and my Trexamet.
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coleman CH.com Newbie Offline I Love CH.com! Posts: 17 Coeurd' Alene ID USA Gender:	Re: Ear pain? Reply #11 - Jan 29^th, 2009 at 7:08pm My wife is a ch'er (Tanyana) and she always get ear pain on the ch side of her head. Once, she even missed an ear infection the blow a hole in her eardrum because the pain of an ear infection and ch feels the same to her. coleman
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MkeithD

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That which does not kill
us.....makes us stranger.

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Re: Ear pain?
Reply #12 - Feb 11^th, 2009 at 9:23pm

hey kim....ear pain. yeah right in front of my ear on my cluster side. feels like something crawling around in my head. spreads down my face into my jaw and teeth. i never had the eye thing most ppl describe associated with CH. i was misdiagnosed with blocked sinuses and eustacian tube infection as well as TMJ (duh?) before CH. keep listening to ppl on the forum an dont be afraid to suggest options to your doc. or find a new one if they aren't helping. there are standard drugs used to treat CH. be we each have our own cocktail to keep th beast @ bay.

best of luck! MKD

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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: Ear pain? Reply #13 - Feb 11^th, 2009 at 11:18pm hi there.i ve got something similar to what u are describing along with the fact that ear trembles(right word?not sure about).other times during heavy shadows and others as pre signs of an up coming attack.all this time still no idea whats about.
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MkeithD

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Re: Ear pain?
Reply #14 - Feb 12^th, 2009 at 11:42am

whut up black.
dunno? CH is different for us all. seems to focus mostly on my trigeminal nerve and less on the occipital. could just be the location of the nevres in our heads that gives us the ear thing.

another weird ear thing is, im mostly pain free tho still in cycle. the meds are supressing pain but not attacks. 2pm and 2am i have um...sensations on my cluster side (right) then the side FX of topamax kick in general trippy-ness. spatial distorions and stuff. but...ever since i started topamax my ears ring constantly. i mostly dont notice it unless there is no other noise around..and i have a 3 year old so that doesnt happen much. hehe.

MKD

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