Jump to content
ClusterBusters
MoxieGirl

The worst pain known to medical science... really?

Recommended Posts

Still looking for the quote but ran across this which I thought was interesting.  Love his last comment...

Health

Top 7 Most Painful Conditions

Mar 18, 2013 12:01 PM ET  //  by  Sheila M. Eldred      

Previous   /  Next   

Cluster Headaches

Vince Neil of Motley Crue performs as part of the 4th Annual Sunset Strip Music Festival on the Sunset Strip in West Hollywood, Calif. in August, 2011.

   Corbis 

Motley Crue singer Vince Neil has played concerts through broken bones and torn ligaments, but crippling pain recently forced him off the stage after just a few songs. The culprit? Kidney stones. It's one of the most painful medical conditions humans endure, pain experts say -- although some are worse.

In general, neuropathic pain -- pain produced by damage to nerves rather than tissue -- produces the most excruciating pain, according to Allan Basbaum, chair of the anatomy department at University of California, San Francisco, and former editor of PAIN, the Journal of the International Association for the Study of Pain. And because many of these conditions come and go, patients often live in trepidation of their next attack. "The unknown is terrifying," Basbaum said.

While a definitive ranking is impossible, here's a look at a few of the most debilitating maladies, the kind Basbaum says patients rank as a 15 on a scale of 1-10.

Cluster headache

   Getty Images 

People who suffer from cluster headaches describe them as worse than childbirth without anesthetics, worse than gunshot wounds, head injuries, or a burned hand. "They'll find the worst thing they can think of and tell you it's worse," said neurologist Dr. Peter Goadsby, director of UCSF's Headache Center. "It always causes me to stop and draw a breath."

Part of the affliction of cluster headaches is that few people know what they are.

"People will say, Why don't you take a Tylenol?" Goadsby said.

While migraines affect about 15 percent of the population, cluster headaches only afflict 0.1 percent of the U.S. population. Still, that's about the same rate as the better known multiple sclerosis, Goadsby said.

Treatments include 100 percent oxygen treatments, injections, nasal sprays and preventive drug treatment. But the current National Institutes of Health research funding for the condition is zero.

"I personally just don't get it," Goadsby said.

Share this post


Link to post
Share on other sites

imaging and other developments

May and Goadsby

Current Opinion in Neurology June 1998

http://journals.lww.com/co-neurology/Abstract/1998/06000/Cluster_headache__imaging_and_other_developments.2.aspx

"one of the most severe pain syndromes in humans"

shocked

However "most/worst" it might be - we might be thankfull that is "only" a CH!

http://www.walesonline.co.uk/news/local-news/man-fatal-stroke-after-headaches-2014303

Share this post


Link to post
Share on other sites

I have an issue with that statement, and it has been bugging me for awhile.

Many cluster heads, myself included, tout that statement about to gain sympathy from a public that does not understand us. It's as if that statement is meant to encapsulate the seriousness of our condition. We often lack other words to describe (or perhaps describe in one sentence) the Hell that is Cluster Headaches.

And I get that. Like I said, I've used it myself.

I saw a post recently that said.. "... Some doctors and scientists have described the pain resulting from cluster headaches as the most intense pain a human can endure - worse than burns, broken bones or child birth."

WHAT!! I appreciate their well meaning intensions, but, WHAT!

First off, scientists? Really, do we have scientists involved in the study of cluster headaches? But that's actually a trivial point. The real thing there for me are the statements 'most intense pain a human can endure' and 'worse than burns, broken bones and child birth'.

OK, clusters are painful, very painful. The only other medical condition I know off the top of my head that comes close is Trigeminal Neuralgia, which I would say is about a 9.5 on the pain scale if clusters are a 10. They are a Hell in and onto themselves. But there are other things out there that cause phenomenal pain. I know of a kid who has a very rare chronic pain condition in his stomach that easily rivals clusters. I wish I could remember what it is called, but there are probably only 10 people in the world that have it.

I also wonder about things like the Australian Box Jellyfish sting, or the fire ant. Get stung by enough of these jellyfish and you're dead! That sounds pretty intense. The fire ant is said to be like being shot by a gun!

And yet, everyone compares clusters to child birth. I know they are trying to relate it back to a pain that everyone can understand, or at least 1/2 the population can. But I know people who had a really easy birthing experience, and others really bad.

I've never had a broken bone, so can't say how clusters compare.

The thing is, the pain of a cluster headache (in my very humble opinion) is just one part of the whole picture of the condition.

What about the frequency, the sleepless nights, the sheer terror of not knowing when the next one will come, or perhaps worse, knowing that going to sleep will bring one on. Remember the film Nightmare on Elm Street? Remember how the kids were terrified of going to sleep? That's what it's like for a cluster head who gets attacks at night.

The list goes on, and my rant could go on, but I'll stop here.

I feel that we, as a cluster suffering community need to find an effective way to communicate the absolute Hell that having clusters is to people who are unable to experience them themselves. We must find the words to describe the condition in a way everyone (not just those who've given birth) can relate to.

Rant over.

MG

Share this post


Link to post
Share on other sites

I get what you are saying. I have used that term also. I can tell you with certainty from experience that my Cluster headaches hurt more than anything I have broke or have had medically wrong with me. For me Kidney stones, shattered Acetublum, broken vertebrae, separated shoulders, broken collarbones, torn ligaments in both ankles torn cartilage in both knees do not hold a candle to the pain of a cluster. So for me I just say that they are the most painful thing I have ever felt.

Share this post


Link to post
Share on other sites

What about the frequency, the sleepless nights, the sheer terror of not knowing when the next one will come, or perhaps worse, knowing that going to sleep will bring one on. Remember the film Nightmare on Elm Street? Remember how the kids were terrified of going to sleep? That's what it's like for a cluster head who gets attacks at night.

Rant over.

MG

I know this well. 20 years or more I've suffered 1-3 times a day, every day for 3 months at a time, 1-2 cycles a year. Wake me out of a sound sleep, frantically fumbling for an imatrex shot. I'm just starting another cycle (and they'll only get worse until they, like, peak for me) and I want somebody to feel bad for me. 😕 every Time I feel the onset I say, "I can't do this again, I can't go through this again.) terrified. I've saved up about a hundred shots since the last cluster but I don't imagine it's a great idea to use them every day for even a month. Maybe it's ok to, idk, but when they come, and I know I have a shot, I'm using it.

Share this post


Link to post
Share on other sites

Adamlee', please, GET OXYGEN.  And think about the Vitamin D3 regimen and busting.  That trex ain't good for you.  Of course, if you feel like you need it, you need it, and it's better than suffering . . . but there are better options.  All those things are discussed over in the ClusterBuster Files section of the board, or if you ask, people will tell you more about them here.

Share this post


Link to post
Share on other sites

Adamlee you just got advised by one of the very best in cluster history.  :)

 

It looks like your CH experience could be seriously revolutionized indeed. High flow 100% O2 (not the weak and ineffective low flow rebreather O2 that was the only known game in town 20 years ago) should make a nice non-toxic replacement for the trex, but until you actually get your cluster paws on that O2, this imitrex tip explains how to stretch your doses, doubling or even tripling your supply (!), and lessening side effect risk.

 

The terror is completely understood.  :(

Share this post


Link to post
Share on other sites

I'm looking at two tanks in my room right now. It works for me MAYBE 50% of the time that I try it. The thing is, I don't want to sit there for 10 minutes most times to find out if it's going to work this time or not. I know all about that nonrebreather etc. I get it up full and breath right off the tube or it does nothing. I like try to hyperventilate on it. Like I said sometimes it works. Didn't ever hear about D3. From what I've read I'm very optimistic about the hallucinogens. I've tripped more times than I can count so I know I can handle it, in fact,I love mushrooms. I've pretty much had access to these kinds of things, in the past, whenever I wanted them. Until now when I need it medically. Go figure. I think shrooms would be easier to guage a very low dose and I know they're easier on my body. I think I actually might be able to find lsd but who knows how many micrograms were dropped on a strip of that ya know? I steer clear of that these days.

Share this post


Link to post
Share on other sites

Don't want to bug you more about O2 then, Adam', except to say that a higher-flow regulator (higher than 15 lpm) and a bigger reservoir bag have helped a lot of people, particularly with a hyperventilating strategy.  Also, downing an energy shot/energy drink right at the start also helps a lot of folks.  But I won't pester you about O2.

 

Here's the D3 info (though I now notice that you posted over in the CB Files section, so you clearly know how to get there):  https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

If you can't get shrooms and don't want to do LSD, you could do RC seeds (discussed over there in the CB Files, though you should get back to us if you decide to go that route), and you could consider 5-MEO-Dalt, a synthetic tryptamine that's not illegal in a lot of US states, and which has been very effective for some people. Here's a long thread about it: https://clusterbusters.org/forums/topic/3918-5-meo-dalt/?hl=5-meo-dalt   Some people here are knowledgeable about the 5-Meo-Dalt, but it's discussed a lot more over at the Facebook group "Cluster headaches."

Share this post


Link to post
Share on other sites

Thank you for all the info. I thought about joining this forum a few times and just never did until yesterday when I was feeling completely alone (people might fein sympathy but they haven't the first clue what you're going through.) I know how to get around the forums and I have a lot to look into. Which is funny because most doctors, at least until recently, will just say, "Oh I'm so sorry, you have cluster headaches, there's no cure." the end.

Share this post


Link to post
Share on other sites

Also, I've had some experience with shulgan's synthesized 2c's but haven't heard of that one. The rc seeds sound promising. Isn't lsa a derivative of lsd that doesn't cause hallucinations? I thought I read something about that. And that the research and synthesis etc just isn't worth anything to the pharmaceutical industry.

Share this post


Link to post
Share on other sites

Yes to both.  RC apparently can lead to psychedelic effects, but at the doses taken to treat CH, it virtually never does.  Legal to purchase and possess; just unlawful to process/consume. "Processing" is extremely simple: grind and soak in water.   5-MEO-Dalt is one of Shulgin's compounds. It also has no psychedelic effects (for most people) when taken at effective treatment doses.  There are probably many of those compounds that would help treat CH, but this was selected by the guy who did the research -- Mitch Post -- for its low effects plus positive results (for many).  As I said, the 5-Meo-Dalt is essentially legal in many US states, and can be legally purchased from some suppliers. (I say "essentially legal" because while it's not explicitly banned in most staes, there is always the possibility that it could be prosecuted as an analog drug.)

Share this post


Link to post
Share on other sites

I knew that sounded familiar. Now I remember I ran across that name 5meoDALT researching that fake weed my brother was smoking. Pretty sure it killed my god daughter's father 2 years ago. Not necessarily that particular substance. I don't like the idea of research chemicals. I like something natural that I'm familiar with. But the seeds are something I didn't know about. Definitely worth a shot.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×