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Dopiest responses to CH (Read 50317 times)
idorko
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Re: Dopiest responses to CH
Reply #175 - Dec 15th, 2012 at 10:06am
 
So my mom and I were in the Burlington Mall in Mass yesterday before my appointment with Boston Children's Hospital Headache Clinic at Waltham.
We were talking about my neurologist, and this guy who owns a kiosk said "you're having headaches? Have you tried this?" he handed me a rice bag. "It has willow bark in it. That's what they make tylenol from. It'll cure your headaches!"
"First of all, I have cluster headaches, for which general painkillers are ineffective. Second, they make asprin from willow bark, not tylenol. Lastly, it would be infinitely more effective to take asprin than smell willow bark, because they extract a precursor to asprin from the willow bark, not actual asprin. Asprin doesn't help these headaches, please stop pushing your ineffective alternative medicine as if it is a cure, when it is not."

the guy walked away.
It felt pretty good.
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Kranskie
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Re: Dopiest responses to CH
Reply #176 - Apr 20th, 2013 at 4:34pm
 
Sorry for necromancing a thread, but since that accurately describes me too, I thought I'd share my experiences too.

"Well, it's just a different kind of migraine. You have to learn to live with it." By an neuro in ER after a week and a half of not eating anything due to the pain. (and if the neuro had been any good, I would have gotten my diagnosis 12 years ago.)

"Your life is decayed! You must come back home to live!" by Mom, after a cycle, where I ended up in the afore mentioned ER. I guess she was lonely. But she has darlingly called me her "nine month migraine" before, so...

"You need to stop eating wheat." by mom again

"Your headache is caused by that computer!" a nurse, while I was in the hospital for my backpain eating enough opiates to kill an elephant, no help for my headaches though.

"Did someone hit you?" After being wheeled to the said hospital with my eyelid hanging and slurred speech. Even the paramedics were struck dumb with that one. They had seen the episode begin in the ambulance, when I was being transferred between hospitals.

"Have you tried eating only organic food?" by an idiot convinced that it was my unclean living that caused my headache

Bonus round:
"You were shot in the back in a past life, that why you have backpain!" an ostheopath who dabbled in spirit healing, a fact I learned after I had been there.


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Josh W
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Re: Dopiest responses to CH
Reply #177 - May 26th, 2013 at 7:40pm
 
I had an arachnoid cyst drained that is on my temporal lobe. First ch and Dr visit for them when i was 18 years old,  surgery was when I was 10. After the mri, Dr told me and my mom that they were "ghost pains " from my surgery. Ghost pains,  still makes me laugh 18 years later.
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Guiseppi
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Re: Dopiest responses to CH
Reply #178 - May 26th, 2013 at 9:28pm
 
Josh W wrote on May 26th, 2013 at 7:40pm:
I had an arachnoid cyst drained that is on my temporal lobe. First ch and Dr visit for them when i was 18 years old,  surgery was when I was 10. After the mri, Dr told me and my mom that they were "ghost pains " from my surgery. Ghost pains,  still makes me laugh 18 years later.


Dude, that's one bad-ass Ghost! Shocked

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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idorko
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Re: Dopiest responses to CH
Reply #179 - May 26th, 2013 at 10:18pm
 
introducing the Ghost Faced Killah?
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AussieBrian
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Re: Dopiest responses to CH
Reply #180 - May 26th, 2013 at 10:41pm
 
You're right, Josh. With a doctor like that you may really be better off with an exorcist.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Re: Dopiest responses to CH
Reply #181 - May 31st, 2013 at 3:18pm
 
I go to see an Army Doc about my CH after finding out about O2.

"Doc, its in my med file, I have CH and my cycle has started!  I just heard about oxygen... is there any way I can get a script for a portable O2 tank?"  Embarrassed

"No way Sergeant.  I know what you'd do with that thing."  Angry

"Erm... use it make the pain stop?"  Huh

"No Sergeant, you'd probably go shoot it at the rifle range to make it blow up or something.  Now here's some Motrin..."  Angry

Fast forward to the following year when I worked up the courage to ask another Doc about getting a tank...

"Doc can I have a..."  Embarrassed

"Yes."  Smiley

"Really?"  Huh

"Yup... that last Doc was a screaming imbecile who didn't know a thing about medicine.  Go get your Indocin, Sumatriptan and Oxygen bottles up front."  Cool

"Doc... I <3 you!"  Kiss

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Guiseppi
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Re: Dopiest responses to CH
Reply #182 - May 31st, 2013 at 3:53pm
 
DAMN!!!!!!!!!!! An educated GP, that sir is a beautiful thing!!! Smiley Smiley Smiley

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Timothy
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Re: Dopiest responses to CH
Reply #183 - May 31st, 2013 at 6:45pm
 
Hello again all  Smiley

To continue my previous post;  Fast forward another decade and I find myself overseas in a dusty mountainous country getting smashed with 'the Beast' during my last month here.

Normally at home my wife is there for morale support when the monster intrudes, but now all I have is my 19 year old platoon medic. 

He (for some reason) refuses to rub my back and say "it'll be ok sweetie" when I am having an attack  Grin.  I forgive him though, as after being in my room during one bad night, he magically appeared the next day with a lovely green bottle of oxygen.  Bless this kids heart, he's doing what he can to help, and his stature as a professional (even at 19 y/o) is tops in my book.  I swear I think he really wanted to say "WTF is happening right now Shocked ?!?!?!?" the first time he saw me in full on suck mode.

Good news, 3 more weeks and I go home.  Bad news, this cycle is only just starting and if history is any indicator, I have a couple months of fun time (not really) coming my way.

As an aside: All in all, I have had positive experiences with actual Military Docs about CH and they tend to bend over backwards to help.  The odd "oh its migraines or stress or blahblahblah" here and there, but surprisingly they seem well educated on it for the most part.

Regards,
Timothy
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Josh W
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Re: Dopiest responses to CH
Reply #184 - May 31st, 2013 at 7:48pm
 
Timothy.  Sorry to to hear about cycle. I wish you pain free travels back home.
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« Last Edit: May 31st, 2013 at 7:49pm by Josh W »  
 
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idorko
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Re: Dopiest responses to CH
Reply #185 - May 31st, 2013 at 8:17pm
 
Timothy wrote on May 31st, 2013 at 3:18pm:
I go to see an Army Doc about my CH after finding out about O2.

"Doc, its in my med file, I have CH and my cycle has started!  I just heard about oxygen... is there any way I can get a script for a portable O2 tank?"  Embarrassed

"No way Sergeant.  I know what you'd do with that thing."  Angry

"Erm... use it make the pain stop?"  Huh

"No Sergeant, you'd probably go shoot it at the rifle range to make it blow up or something.  Now here's some Motrin..."  Angry

Fast forward to the following year when I worked up the courage to ask another Doc about getting a tank...

"Doc can I have a..."  Embarrassed

"Yes."  Smiley

"Really?"  Huh

"Yup... that last Doc was a screaming imbecile who didn't know a thing about medicine.  Go get your Indocin, Sumatriptan and Oxygen bottles up front."  Cool

"Doc... I <3 you!"  Kiss


idiot doctor, but to be fair I was encouraged by friends to do stupid shit once I got my oxygen tank.

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Re: Dopiest responses to CH
Reply #186 - Jul 12th, 2013 at 1:06am
 
The most irritating thing I've been told happened in an emergency room. "We have a headache protocol. You need to take oxygen at 4 litres per minute for 20 minutes before we can do anything else."  Cheesy An hour later, "You have to take oxygen at 6 litres per minute for 20 minutes before we can do anything else." Cheesy Another hour later "you have to take oxygen at 8 litres per minute before we can do anything else." A half hour after that, "take this regular strength tylenol and wait 40 minutes to see what happens."  Shocked Each time I told them to read my chart, I know what this is and how it needs to be knocked on the head. They never listened. The tylenol was the killer. I almost left in disgust. Angry
There's no treating anyone like an individual any more. We are all, apparently, a product to be put through a system.
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« Last Edit: Jul 12th, 2013 at 1:07am by repguy2020 »  
 
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Batch
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Re: Dopiest responses to CH
Reply #187 - Jul 12th, 2013 at 1:15am
 
Timothy,

Thank you for your service...

I'm an old Navy Fighter Pilot and hearing military medical folks put out BS like that on oxygen therapy as an abortive for cluster headaches makes me want to go ARMSTRONG !!!

Please shoot me a PM with the email address for the idiot medics...  I've still some pull at OSD and some heavies at the National Naval Hospital, Bethesda, MD.  We might just get them educated...

Tale care and start taking some vitamin D3...  See Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register for details.

Take care and hang in there.

V/R, Batch
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« Last Edit: Jul 12th, 2013 at 1:30am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: Dopiest responses to CH
Reply #188 - Jul 12th, 2013 at 6:12am
 
"maybe you should stop surfing in the ocean for awhile"  guess they thought the water was doing something to my head?
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Re: Dopiest responses to CH
Reply #189 - Jul 12th, 2013 at 8:21am
 
Tim, come back from the dust bowl safe and sound. Take Batch at his word, he means it. And for the rest, I've posted this before, but I carry an ER Rx in my wallet from my "informed" neuro saying, if I am admitted for CHs, I am prescribed high flow O2 with a nonrebreather mask, along with IV DHE. Haven't had to use it yet, hopefully never, so I don't know if this would work but it is a valid doctor's Rx. Worth a try. blessings. lance
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Re: Dopiest responses to CH
Reply #190 - Jul 24th, 2013 at 2:59am
 
On my way into hospital, a well-spoken and lucid Granny at a bus-stop gets talking to me. She seems concerned. She looks at me hard and asks me what is wrong.

I am transparent, rocking, groaning, clutching at my eyeball, coming down off a very public Imigran aborted attack with heavy inter-ictal pain and shadowing.

I could barely see. Before she arrived, I had just slipped into the roadside shrubbery and injected Imigran behind the bus-stop shelter, hopefully unnoticed. Caught out again in public...

She seems educated, concerned, interested and persistent in asking me about my symptoms.

Working through half of a barely functioning watery eyeball, in a measured tone I explain my CH as concisely as I can.

I tell her I'm 37 years old, chronic CH since age 4, around 2 years total remission in a lifetime, that I've tried 70 different medications and many times, very nearly died trying to find a solution.

I tell her I'm on my way in to hospital to see a headache specialist to run more blood tests on my thrashed organs and probably for another round of medication trials.

She listens intently for the 10 minutes it takes to summarise CH itself and my lifetime of it, nods her head, then says;

"Well dear, at least you still have your health".

We both got on the bus as it arrived.

It seemed the dopiest thing I had ever heard at the time. Shocked

Fast forward a few years and thanks to Batch's D3 work, I now do have my health. Perhaps she was right...

Cheers, Ben.

Here's to persistence and to the D3 regimen! Smiley
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Re: Dopiest responses to CH
Reply #191 - Jul 24th, 2013 at 3:25am
 
I met a woman in her 50's that said she had chronic cluster headaches AND Trigeminal Neuralgia and "...After trying a hundred medications, the only thing that prevents her attacks is OPANA's."  ...--->  My opinion is: That's got to be total BS & she has been misdiagnosed or (more likely) is just faking symptoms to obtain heavy duty narcotics !

I4B

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Re: Dopiest responses to CH
Reply #192 - Jul 25th, 2013 at 1:56pm
 
Here's an interesting story I thought was relevant to share with all of you here n this thread...

After 2+ years of being told to get "that sore on my back looked at because it may be cancerous", I finally put down my stubborn shield and went to the skin and cancer clinic.

The doctor confirmed immediately that it looked like skin cancer.  I am not surprised, am a bit concerned about how severe it is, test results from biopsy will come back to me in about 10 days, then they set an appointment to carve it out, tell me about possible future treatments, etc. 

While the doctor and the nurse were behind me injecting a numbing agent prior to the biopsy, I felt the knife cutting a piece of my back for the biopsy.  I jokingly asked "what was the purpose of the needle injection prior to cutting?"  The nurse replied "so you wouldn't feel the pain when doing the biopsy."  I said the injection didn;t work, as I can feel the knife cut by back."  The doctor said "would you like more of a numbing agent?"  I replied "No thanks, I can handle more pain that most people in life as I have Cluster Headaches.  Do you know what those are?"

This is where it gets good...the doctor says..."I had one of those last year for about a month."  I immediately thought of this thread and laughed silently in my head.  I said "a month huh, wow, that must've been really difficult.  How did you deal with it?"  He said "I had to go on vacation to Costa Rica and swim in the warm saltwater everyday for a month straight to get rid of them and it worked."  He said "I felt tremendous pain behind my eyeball.  Where do you get yours?"

At this point, I realized he read an excerpt for 30 seconds from a medical textbook and was just empathizing with me and refrained on further discussion of CH's as an ignorant doctor speaking about CH's is at the top of my list of most heated things in life.  I replied "the trigeminal areas."  He then understood I knew proper words and refrained from further discussion about CH's.  Of course, I told him to go to this website if he ever gets them again. 

The bright side is that I do feel very comfortable and actually impressed with his knowledge, 30+ years experience and office manners to continue future skin cancer treatment.

-Gregg in Las Vegas
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Re: Dopiest responses to CH
Reply #193 - Jul 26th, 2013 at 4:51pm
 
I have loved reading this thread. After a really crappy week I needed a laugh.

I'm sure we've all had the "oh I get headaches too, just take an extra paracetamol" all too often.

The dopiest a doc has said to me, well there are two, first one was way back when I was 15 and the doc said "of course your eye area hurts, you have your eyebrow pierced". I broke down crying and walked out. The piercing didn't last long. I tend to hit my head and it did start hurting too much. And just a couple of years ago a doc said "your dreadlocks are too tight". It baffles me how these people tie their laces never mind pass medical school. I no long have dreads so might hunt him down for a new excuse! 
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maz
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Re: Dopiest responses to CH
Reply #194 - Jul 29th, 2013 at 5:10pm
 
If I call it cluster headaches. Smiley........................"oh, just a headache then"   Smiley

If I give it it's proper name - migraineous neuralgia.........."So it's a migraine, or like a bit of tooth ache" Smiley

Now I call it trigeminal nerve compression (suggested by someone else on another site). That seems to stop the stupid responses.  Smiley
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Re: Dopiest responses to CH
Reply #195 - Jul 29th, 2013 at 9:21pm
 
I prefer "violent head smashy pain disease"
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Re: Dopiest responses to CH
Reply #196 - Aug 18th, 2013 at 10:18am
 
I had the inside of my house painted a few years ago and asked the contractor to patch a couple of holes in the wall of my bedroom, which I explained happened as a result of a Kip 10 attack.

He asked "you did that because of a headache"?
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Re: Dopiest responses to CH
Reply #197 - Aug 23rd, 2013 at 2:15am
 
My Doc, told me that it couldn't be CH because it was the first time i came to him with it and CH was reoccuring.... damn scientist. I had my headeach dairy of the last month with me and all...
I told him that the next time i came back with this there was no discussion and he should redirect me the Neuro. and he did the next time i had CH after trying triptane's for 2 weeks, damn posion. The Neuro on the other hand had my fixed up with verapamil and O2 within 15 minutes.


Luckely all people around me are very supportive and not judgemental, thank god for that.



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Re: Dopiest responses to CH
Reply #198 - Sep 16th, 2013 at 12:12am
 
This is somewhat the "other side of the coin", but OH so satisfying!

The year I went chronic (the same year I was divorced by my wife) I was getting multiple hits a day for over a year, taking Immitrex injections ... she thought I was getting stoned all the time. Could not make her understand that there is NO good feeling from Trex except the relief from the CH ... afterwards it was like a really crappy hangover!

So one day, the lovely woman (whom I'd seen give birth to our son and never let out a welp) came into the house screaming bloody murder and holding her head. I did my typical (home) remedies for her, none of which worked ... and then asked her if she wanted to try one of my Trex injections ... to which she replied "anything ... just make the pain go away"! It was the first time I'd ever heard her use the F word! I gave her the shot and she screamed "HOW THE FK DO YOU DO THIS EVERYDAY"!!!

I'm pretty sure it was divine intervention, but the bitch divorced me anyway!

"God, if you're listening ... let her have these for the NEXT 15 years ... I've done my time and she's just MEAN!!!"
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Re: Dopiest responses to CH
Reply #199 - Oct 2nd, 2013 at 5:12am
 
my mom, bless her soul, suggested i try "tapping" during a cluster, its some kind of new age tap your head with your fingers treatment,she still doesnt understand how violent and brutal they are as she has never seen an attack, there will be no forehead tapping while im mid-attack  Shocked
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