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CHfather

Vomiting

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During this cycle, almost every night along with her attacks my daughter has serious vomiting.  Years ago when she started having CH, she'd vomit a little because the pain made her nauseous, but now she says she's not nauseated -- it just feels like her body wants everything that's in it OUT immediately.

She's not doing any busting (yet), so it's not a reaction to seeds.  Just wondering how common this is.

Thanks.

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Thanks.  She has considerable light sensitivity (also more typical of migraine than CH), but she also has all classic CH symptoms.  Even though she lives in a major metro area, her diagnosis history is crap (like most people's), and so much depends on self-"diagnosis" with the help of folks like you.

She got an appointment today at a major headache center -- for March 22, 2011!  Sees her regular neurologist on Monday, but I hold out little hope for that: We're still trying to get this neurologist to prescribe high-flow O2.  She'll bring the JAMA article with her this time.  (I tried to buy some O2 at a welding supply place today and was told that a license or a prescription was required.)

Jerry

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She has considerable light sensitivity (also more typical of migraine than CH), but she also has all classic CH symptoms.

Sounds like she may have both CH and migraine with aura, which could explain the vomiting.  A good diagnosis, as hard as it is to come by sometimes, is crucial.  I know it's four months away(sheesh), but she should get a good one at the headache clinic.

Sees her regular neurologist on Monday, but I hold out little hope for that: We're still trying to get this neurologist to prescribe high-flow O2.She'll bring the JAMA article with her this time. 

I'm not sure which JAMA article you are talking about but, you should print and take the article that Fun Guy just posted by Dr. Todd Rozen and Royce Fishman:

http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

That should give you all the ammo needed to get a good script for 02.

(I tried to buy some O2 at a welding supply place today and was told that a license or a prescription was required.)

You don't tell a welding supply that you are getting oxygen for medical purposes.  ;)

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About 10% of people with clusters have nausea and/or light sensitivity. Its one of those things that complicates diagnosis and why many of those 10% get a migraine diagnosis early on in the process.

When she sees the Neuro on Monday, I would get out the other symptoms before the nausea and light sensitivity so the doc doesn't immediately zero in on migraines and not even hear the cluster symptoms.

Bob

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Keeping a very detailed journal of head pain, symptoms, and times is what finally helped my neurologist give a proper diagnosis.  I had migraines/tension headaches almost daily and also clusters so the symptoms would intertwine. 

For me, nausea and sometimes vomiting accompany a migraine.  I don't experience this during a cluster.  A couple of times I remember being shaky and vomiting after enduring a long level 10 attack.  I associated this to my nerves being shot rather than a cluster symptom. 

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Once again, thanks to all. 

A'Oop, I was referring to this JAMA article from last year: http://www.salterlabs.com/store/downloads/107.pdf    Together with what you sent me via FunGuy (Ah! Just got the joke on that one), it ought to convince anyone--even a neurologist!

 

(And, after the 02 guy asked if I had a license to buy the O2, I didn't have much choice but to try to prevail on his potential sympathy for a CH sufferer.  He actually told me that they were not allowed, by law, to sell 12-15 lpm O2 (in Virginia, outside DC). But maybe he was just sick of me by then.  Suggestions for an improved strategy are always welcome, though I guess for now we'll wait on the forthcoming appointment -- and move on tomorrow to phase 2 of RC busting.)

I've been sitting up with my kid as she endures this middle-of-the-night horror, and I think of all of you as she goes through it and then somehow manages to face the next day with hope and a smile.

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I'm not familiar with the welding 02 suppliers in the DC area, but I can tell you that if you try another one, don't mention that it is for medical purposes.  I don't doubt but that there is a law against selling welding 02 for medical use.  All you will be doing is renting a (large) M cylinder and paying for refills.  You can procure a 12 - 15 lpm regulator online from E-bay.  You will also need a non-rebreather mask or mouthpiece, and a humidifier (bubbler).  If you haven't already, check out the "ch.om oxygen page" from the "Menu" tab on the upper left corner of this page.  Lots of good info there.

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I've been sitting up with my kid as she endures this middle-of-the-night horror, and I think of all of you as she goes through it and then somehow manages to face the next day with hope and a smile.

Our kids (and everyone here) are the strongest, most amazing people you will ever meet. 

My heart goes out to you because I sit where you do, thinking the things you think, and feeling what you feel.  Asking the same questions, and praying the same prayers.  Wishing we could take the pain for them, wondering why they were chosen, how much longer they will have to endure, and being completely in awe of their strength.  So grateful when they finally fall back asleep.

Neither of you are alone in this anymore.

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Our kids (and everyone here) are the strongest, most amazing people you will ever meet. 

My heart goes out to you because I sit where you do, thinking the things you think, and feeling what you feel.  Asking the same questions, and praying the same prayers.  Wishing we could take the pain for them, wondering why they were chosen, how much longer they will have to endure, and being completely in awe of their strength.  So grateful when they finally fall back asleep.

Neither of you are alone in this anymore.

you are so wonderful. what a lovely post.

i really hope your little one's ch to stop

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lolol there gonna be our babies until there grey and old lolol

my son complained of a headache the other day i got so worried he's only 3. thank god it passed.  he was coming down with something that day he throw up on me lol he's ok now. :-)

pf days to you all i cant bare to think of anyone going through them especialy children :-(

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Thanks, Takenit.  Not better yet, but thanks to this site we have information, hope, and support.  As I read your post about leaving that other site, I thought that, as far as my experience as another Newbie here goes, you've found the right place.

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Hi CH Father!  I dont know if you're still reading this thread, I havent logged in for awhile.  Well, I am one of those 10%.  I am female and I vomit when I get 9's and 10's.  Beware, the doctors told me I had migraines for years, they assume its migraines if your female and vomiting.  I hate for your daughter to be misdiagnosed for 15 years like me. 

I think you are an awesome dad for getting on here and trying to help her! 

Raquel aka Rock

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During this cycle, almost every night along with her attacks my daughter has serious vomiting.  Years ago when she started having CH, she'd vomit a little because the pain made her nauseous, but now she says she's not nauseated -- it just feels like her body wants everything that's in it OUT immediately.

She's not doing any busting (yet), so it's not a reaction to seeds.  Just wondering how common this is.

Thanks.

Apparently vomiting is not a common issue.

It is not a natural reaction but a desired reaction for some. At the extremes of CH pain sometimes it can offer a respite from the pain. Its an extreme action that can counteract the pain of CH or shorten a hit. In other words silly as it sounds its a way to abort an individual attack.

Another way to see it is that a large percent of serotonin is actually present in the gut and if as suspected serotonin is the responsible culprit for CH then a natural unknown desire of our bodies would be to rid possible excess serotonin this way.

For many years before CBs I would force myself to let go just to shorten the hits when I could barely take it. Maybe it was just something to do.

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Thanks, Rock and MJ.  She's doing so much better since these early posts of mine -- thanks to all the heroes at Clusterbusters.  And once she got the CH under control, the vomiting stopped.  I think you really might be right, MJ, because the experience very definitely was that her body wanted everything OUT, NOW, and her last vomit tended to coincide with the abating of her HA.

Much appreciated -- and may she never have to deal with that again!

Jerry

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We all have different reactions to the pain. I know that some shout, some appear momentarily insane, some dance, and others cry. The pain is so intense, it becomes a very personal trauma.

What most good docs will look for is a combination of at least 4 primary symptoms that align to a diagnosis of CH. However, there are plenty of docs out there who pick up on the outliers first and hang their hat on it - ah, another problem solved. If we worked that way in our careers, we wouldn't be very successful. So, as AllyOop suggested, take some care not to provide a red herring out of the gate that they can easily hang their hat on. Focus on the most critical and the most prevalent symptoms first in order to get at the right diagnosis the fastest. Once you have one solid diagnosis, you may find that there are multiple confounding headache types at play, as though they work together.

It's hard to know what's aura and what's a reaction to the intense pain. I don't believe there is a "typical" reaction that applies to all. I have intense ear ringing and an actual loss of hearing on my pain side. No explanation. I also have severe vertigo and syncope (passing out) at times with or without headache. No explanation. The headache center's head honchos got on this and decided it was CH with aura. Apparently this is not unheard of. They also determined that, since I have ongoing pain (shadows), that I concurrently have chronic migraine. I don't actually believe that, but apparently I exhibit the symptoms, minus light and sound sensitivity and no nausea.

My point in this is that I've been to a couple of the best headache centers around - Jefferson and Cleveland Clinic, and it appears that beyond the general diagnoses, they're just guessing based on a list of symptoms. You have to keep them focused on the most concerning issues and get to the rest later.

-T

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I'm one of the 10 percent as well. On the upper end of the scale, I get quite nauseous - which is a pain when you're trying to hold down shrooms and RC seeds. Nausea is a normal reaction for me when experiencing tremendous pain. During my one and only kidney stone, I hurled one afternoon while writhing on the bathroom floor in pain. The funny thing is... I remember laughing and thinking "This is nothing compared to a cluster attack!"  : :P

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I think you really might be right, MJ, because the experience very definitely was that her body wanted everything OUT, NOW

Fo sho!  About a 5 second warning!  and yeah, mine go away after that, its so sudden I dont always make it to my destination.  Definately helps mine abort. 

So good to hear she's doing better!!!  Yay!  Woot Woot! 

Dan, I have no good reason.  Kinda busy, but thats a lame excuse.  Everyone here is so friggin awesome!!!

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