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john2000

Pain level

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Almost every article claims the CH is the worst pain imaginable.

One on the recent articles claimed that it is the worst pain any human can feel ,just before they pass out.

 

My pain is nowhere at that level,it is about 2-3 times worst then the worst toothache I ever had but more wider reach with more pounding and high BP etc. I curse from desperation and hit the floor many times but still I can image that It could have been much much worst.

 

I know it is not a migraine,tension,high BP,sinus . Also opioids  never helped me either with CH pain. But I wonder from time to time.  Is it really CH if I 've never experience that level of pain that would make me pass out?

 

I could image much worst pain, then I have. Do you really have pain like that?

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...not sure I follow....but ch pain is the worst I have ever experienced....and while I have prayed to pass

out countless times...have never had the relief that would provide......and even then....it would probably prove

temporary....

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Passing out of my cluster would be a big help!id seriously rather be put in a lions den!id rather fight lions! No point in trying to fight the cluster beast ,cluster beast always wins!so the thought of passing out would be welcome to me,!save me tripping out, but arwell thank mother nature aye!

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I questioned myself because of the same reason and did not seek medical attention during my years as an episodic clusterhead because the pain levels described did not (yet) reach those epic proportions. They hurt, a lot, but I still imagined child birth to be worse for example. In fact, I used to dismiss them thinking I must be getting a cold or something. (After my diagnosis I learned they weren't normal)The worst possible hits didn't come until I became chronic and now the pain level of my hits vary greatly. Sometimes it's merely enough to inspire a lot of teeth grinding and cursing. Sometimes it's enough to produce tears. Other times it's enough to start trashing my living room out of desperation. After speaking with dozens of neurologists and reading reports of countless of other clusterheads, I've come to realise I'm not the only one. It simply varies per person. Some only get the big hits, some only get medium hits, some get a mix. Some find it varies per cycle.

 

My advice is not to attach to much value to the pain level.The diagnosis process for CH is far more concerned with its unique and stereotypical features (such as the rhythms in which the unilateral attacks come, the symptoms etc). You can talk to your doctor about crossing similar/alternative diagnoses off the list, if you haven't done so already.

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I 've been wondering and denying it for 8-10 years now. I have every symptom, doctors agree that those are not migraines, tension headaches, the only thing that it could be is CH.  I read a similar tread somewhere where people with CH ,some where military too,were saying that getting shot in the stomach , or stepping a mine ,or being crushed was much worse then any CH attack.

 

Also every definition of CH says, that the pain is the worst any human being can experience right before they pass out.

When my neurologist told my that I have a CH  6-7 years ago I said ,no way ,I don't have that kind of pain .

I never went back to him , because of it.  

 

I have to say,because of that definition regarding the pain level  I continued to suffer for 6 more years without O2.

I kept researching CH ,but every time I came to a conclusion that I cant have it because I 'm nowhere near passing out

 

Every youtube video  ,every article says it.

I wonder how many people are living with CH without knowing it or denying it.

 

My pain is bad, I'm a grown men and I do cry from pain after about 30min of no relief,  last time I was crying in public with many strangers around  so it is bad, but I still think that  stepping on a mine and having your legs blown off is 10 times worse. 

 

 

So ,based on this,,,do I have CH or no? Why is there so much  emphasis on that pain level? My KIP level is 8-9, very rare to get 10's.

 

But even KIP 10 doesn't seem to be describing that CH pain they are referring too.

The worst pain should be like KIP 13.

 

 

 

 

 

.

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Hey John,

 

Let's start at common sense. Don't diagnose yourself based on google results or Youtube videos.

 

The international headache society for headache lists the following diagnosis criteria:

A. At least five attacks fulfilling criteria B through D.

B. Severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes untreated.

C. Headache is associated with at least one of the following signs that have to be present on the pain-side:

1. Conjunctival injection (red eye)

2. Lacrimantation (basically watery eye / tearing)

3. Nasal congestion

4. Rhinorrhea (runny nose)

5. Forehead and facial sweating

6. Miosis. (small pupil)

7. Ptosis. (hanging eyelid)

8. Eye lid oedema (swollen eyelid)

D. Frequency of attacks: from one every other day to eight a day.

(Found this list in Pringsheim's 2002 article called "Evidence for a disorder of circadian rhythm and hypothalamus function", among other articles)

 

You'll notice the diagnostic pain level is "severe". On a scale from 1 to 10, severe is usually described as the 7 to 10 zone. Not "10 only".

 

The specialist knows which features are important for the diagnosis process and for distinguishing CH from similar conditions. If you want to dig deeper into this... turn to pubmed or google scholar. There's lots of scientific medical documentation on CH, including diagnosis criteria and data on pain levels of hits. :)

 

Still in doubt? You'll find info on similar conditions through the same channels if you want to rule out alternatives.

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I echo Echo.  The presentation of diagnostic criteria is spot on.  Pain is a perception and everyone experiences it and handles it in a very personal way.  Sure there has to be scales to determine relative degrees of pain for treating acute situations like surgery but on an individual ongoing basis the pain scales may not help as much.  Plus reporting pain is not a contest.  It doesn't matter what others are experiencing or who has the worse pain.  What matters is how the pain affects your ability to live, how you manage the pain and how you prevent it.  If you meet the criteria for cluster headaches and you respond to treatments like oxygen almost certainly you have cluster headaches. 

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I guess i was influenced by that pain level and wanted to hear what I wanted to hear. 

When I started my research about 8 yeas ago thinking it was a migraine I saw a documentary about cluster headache.

That was the most terrifying thing I 've ever seen.  I couldn't believe a person can live like this and not commit a suicide.

So even thou I was diagnoses by a neurologist  with a CH I was denying it for many yrs and keep saying to everyone and myself that it is a migraine.Even today , I just can't believe it  .  Living with clinical depressions and CH as bonus doesn't look like good combo.

 

Only about 1 year ago I finally made a peace with a diagnoses , still I can't  believe that with such a low probability of having CH even with no family history I 'd still have it.

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I get the CH at least 3 times a week for 3 months of the year. I am 27 now and started getting them when I was 22.

 

In terms of pain, I have snapped my tibia at 90 degrees whilst skiing and that pain is no where near the level of my CH.

 

My ch take roughly 5-10 minutes to hit the max which means by 15 minutes I generally pass out from the pain.

 

If this is the case for anyone, I highly suggest getting straight onto a bed or couch when you feel it coming on.

 

Nothing worse than waking up from a CH with a concussion.

 

 

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I hate to repeat such a phrase, but the pain I experience is bad enough that after the first 24 -48 hrs of CONSTANT mind ripping, soul splitting, I am no longer me....fireballs of hell exploding in my skull and being gutted with an electric mixer, I become despondent and ultimately suicidal. The worst attack left me briefly unconscious after vomiting for...minutes?  Hours?  And after a brief delusion of being dead, because pain was gone, it returned on a scale I thought impossible (vomiting during attack is like throwing gas on a nuclear bomb then striking a twenty foot long radioactive match, aka to be avoided at all costs), and only one last thought of my father's smile the last time I saw him stopped me from letting a .38 Ruger sing me to sleep, which almost backfired as I struggled with myself, then dropped the cocked pistol.

  So yeah. It's a bad pain. I'm pretty tired of it, myself. Been 3 decades, and life's hard enough without this shit. Feel one now dammit. No money. Not even for a cheap "sometimes fix" of ONE DAMN BC POWDER SO I DONT FUCKINg VOMIT GODDAMNIT. oNLY A FUCKING DOLLAR GOTTA WALK A MILE ONLY OTHEr RELIeF is HOt WATER AnD I DONT EVeNHAVe THAT. FUK THiS. I'm SO EXHAUSTED. FUKK. AHHH. HELP

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I have had very bad attacks en less attacks. Last half year of Cluster attacks I only had registrations between 4 & 7 (scale 1 to 10)

I hit myself on the knee last year trying to jam a pole into the ground. I saw stars around my head, my knee was getting bigger and bigger but pain....no problem. Other times I hit my head, stars again but no pain.

I don't pass out if I register an 8,9 or 10 attack. I don't crash anything, don't bang my head and I don't hurt myself more. I just try to accept, relax, and watch my breathing hoping it will go away after a while.

@Dane Hope you will find a way for relieve and the money for a sometimes fix. How much would a "sometimes fix" cost?

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When I first began having clusters, I was in my 20's.  I had no idea what was going on.  They were very painful, but not the worst pain I'd ever experienced.  I did run into the ER on multiple occasions, thinking I was having a stroke or an aneurysm... only to be given multiple diagnosis like sinus infections, TMJ, ear infections, etc.  Usually, by the time I got to the ER and waited for my turn, my episode was almost near the end & I'd feel silly for being there.  Finally, my doctor  sent me to a neuro who ran tests and dx'd them as clusters and over the next years, I was a guinea pig for several different med's that were ineffective.  As the years passed, the pain increased considerably from the episodes.  Fortunately, I only get them in the fall and winter.  I cannot even fathom how someone could stay alive as a chronic CH sufferer.  My worst bout ever was 4.5 months straight of 1 per night, every night.  I was darn near suicidal, myself.

So, all of that to say... that regarding pain, the more years I experienced them... the worse the pain has become.  I, too, would LOVE to pass out during an episode.  I am too busy pacing and trying to run away from it to do so.  I am now pushing 50 this year.  My doctor just presribed me 02 for the first time in 25 years, after I made the request.  I was set up with 2 tanks and instructions this afternoon & will see how that works.  I also have read several posts on the board from people who have bad reactions to Prednisone.  I don't like taking it, but it is the only thing that I have found that can actually end a cycle.  Works especially well if I catch it very early on.  60 mg x 3 days, 40 mg x 3 days, 20 mg x 3 days & "usually" they are gone... cycle over.   I have been pretty fortunate the past few years,, but have found that I cannot mess with the Prednisone and "under-dose" or the right dosage will not work & I get stuck in a cycle.  That is where I am at now. 

So, pain is relative.  We all have different pain tolerances, but if you have met the criteria... don't get hung up on the pain level!  The day may come that you wish you could go back to your current levels.  I know I sure do!  In 25 years, I went from "This is awful, but tolerable" to "I'd rather have all 10 of my fingers sliced off, one at a time, than go through this every night!"

BTW... Hi everyone!  I am new to the board! :)

Michelle

 

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Welcome Michelle! You story has a lot a similarity to mine. I also agree with you that pain is relative and no has a right to compare to others. The human experience is truly unique.

As far the 02 goes hope they got a  good set up for you, it took me few tries to get a truly effective one. Sometimes doctors like to start out to low and not the best equipment. 

Also you should try the D3 regimen. It has been effective for many, even us episodics. 

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Welcome, Michelle.  If they gave you a standard non-rebreather mask, it will have a circle of open holes on one side or both sides (often one side is open and the other has a white or gray gasket in it).  Cover any of those open holes as you inhale, so you don't mix room air with the O2 (you can cover them with a thumb, or you can just tape them shut).  Cut the strap off your mask, so you have no chance of falling asleep with the mask on.  Consider quickly downing an energy shot, such as 5-Hour Energy, just before you start on the O2.  (Or can try a cup of coffee or some other high-caffeine beverage.)   When you breathe in, hold the air in your lungs for a while before you exhale.  Some doctors recommend looking down toward your feet as you breathe.  There's more . . . so let us know how that goes. When you say "two tanks," is one big and one small?  Both big?  Both small?  ("Big" is 3 feet tall or taller; "small" is 2 feet tall or smaller.)

As amon' says, try the D3.  It's described in the ClusterBuster Files section.

You have no pharma preventive (typically verapamil is tried first) or abortive (injectable sumatriptan)?  Many folks here aren't big on the pharmas, but some do find that verapamil will end a cycle and sumatriptan will almost always stop a breakout attack.

Have you considered busting????? (Read the numbered files in the Files section.)

 

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I agree with lots of people posting that pain is relative to the person experiencing it. I have had several K10s in my 19 years of having these CHs. I have never had any pain in my life come close, even a pretty bad motor cycle accident. I have been given Morphine during a massive attack and still felt the CH. I would not pray this shit on anyone. When I first started getting mine I was in the Army and attempted to push through alot of them, that will work up to a K8, but after that I am a useless zombie spitting saliva yelling at people while I pace around like a mad man. Thank God O2 helps, I have been stuck without it, and been walking around outside at 3am in the freezing cold in shorts questioning if life is worth living. I have never had a limb blown off, or been blown up. I do have a few friend s who have and most of them passed out or were in such shock they didn't feel any pain at the time of the incident. I am not sure if it is even a statement than can be proven, but I sure wish I would pass out when the K10s start rocking. I have read some really heart breaking posts from the CCs on here and thank God I am not at that point.

Just my two cents

Love this sight, very nice to read and realize I am not alone in this fight

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hm, no you never ever will pass out upon ch pain alone. even not at K12 or so...
Just because of pain, never ever somebody passed out, there is no scientific evidence as far as I know. There must be a drop in blood pressure too in order to do so. Or even another extreme exotic condition wich would be probably out of a worthwhile discussion as it may affect a minor minority.

And if one passes out by accident upon ch pain. Be assured it will be for seconds not even minutes. As stated one must be very lucky even passing out. Not feeling pain and even only low blood los after being hit to  near death is well know.
I'm not qualified giving a final statement on this Mather as this is not my working area. Just my intrepretation of what I can read so far.

My  pain level if in cycle varies very much. There may be weeks ch reaching up to Kxx in order to change rapidly do Kyy. In last cycle the beast gave me an extreme warning: "Hey urs! I'm able to come back at a far more severe level, you ever could imagine, if I want to..."

Yes, no doubt about it about the  value  of this site. To me it was a live saver. My cluster even went abdominal. The most wired bullshit ever had. doc could not understand what is going on with me. Some of them severly abusing me, even blaming me just looking to get doped by morphine. I really should go back to minas gerais in brazil and sack these dam assholes badly... (I don't do because I'm not will to pay for the consequences ...)
(there is not a lot information available about this abdominal pain. It is known small kits having this without any reasonable findings. American based researchers did come up that there may be a faulty production of Seratonin and something else, just forgot the name, causing abdominal pain where it should create severe headache instead...
This abdominal, severe pain did always least for exactly 8 hours. After this 8 hours pain vanished within seconds maximum minutes. Only useful pain med was/is morphium. After having read some information exactly from the stated researcher guess what my solution is in order to fight this type of attacks/pain?

NARATIPTAN, triptans. Confirming the results of the mentioned researchers/doctors that liquids meant to cause headache went bad and gone abdominal creating severe pain.

Hopefully not having overdone out of topic text wishing everybody a nice weekend.

cheers, tonight I'll have some 2 or 3 longnecks of artisanal beer, which I may dring like Likör or wine because they are so rich and nice.And no I even do not touch anymore the well known brands, colored water with some alcohol in it, uhhh....

: )

 

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On 02/03/2017 at 4:39 AM, registrateyourjourney said:

I have had very bad attacks en less attacks. Last half year of Cluster attacks I only had registrations between 4 & 7 (scale 1 to 10)

I hit myself on the knee last year trying to jam a pole into the ground. I saw stars around my head, my knee was getting bigger and bigger but pain....no problem. Other times I hit my head, stars again but no pain.

I don't pass out if I register an 8,9 or 10 attack. I don't crash anything, don't bang my head and I don't hurt myself more. I just try to accept, relax, and watch my breathing hoping it will go away after a while.

@Dane Hope you will find a way for relieve and the money for a sometimes fix. How much would a "sometimes fix" cost?

It doesn't matter.  Nothing helps  Sorry to have written such things  but I was in distress.  Just today, only a couple months since last attack damnit all, I had a minor attack of six hours pass and thankfully I believe it has gone for the night.  BC doesn't help pain, just the nausea which causes my pain to jump off any scale.  Think my mind and body just can't react and I lose consciousness.  I saw several people quote that losing consciousness is not possible with CH.  Welcome to the world of IH and ICP, a world of unending nightmare pain.

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One of the absolute worst cases of chronic CH I've known of, via a forum member here, "Bonkers", involved head injury induced CH where where the pain level would sky rocket so high, passing out from it was was actually routine.

So my take on passing out from CH pain is it is very rare, but not unheard of, and there's no hard rule that it can't happen to some individuals.

 

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I think the initial question makes sense and I am currently somehow in the same situation questioning myself if it's really CH looking at the low pain severity since many weeks. I pass 3 months now being in cycle while I usually just had few weeks the recent years. (Yes it is CH very certain and I am properly diagnosed, but we all had these questioning phases I guess )

In terms of pain, since 3 weeks no night timers anymore,  I am just stilll waked up at 6:50am each morning with an incoming attack. However as soon as I get up, 10 minutes later it's gone. 

Doesn't even pass a Kip 1 - from my perception. No o2 needed anymore either.

But my" Kip 1 or 2 might be a 4 for others. Perception and pain tolerance differs from person to person I believe and I think is even different from the actual "type of pain".

I.e some might experience a "stabbing" pain worse than a pounding pain or whatever. I mean like when I badly burn myself on the oven for example I don't mind much whilst my lady does cry from a similar injury. The other way around, at the dentist I require 2 shots of narcotics that could put a horse down where a normal person is usually completely numb from a single shot already (and sometimes I still feel pain from the drilling vs. my girlfriend can even have her teeth drilled without narcotics ...)

I just take 240mg verap each day and 10k d3 with all cofactors. Also no sugar, wheat, cow diary products or meat since weeks. I had also started psychological treatment as well to lower my behaviour induced stress levels (breathing techniques, progressive muscle relaxation things like that . Taking some time each day focusing to breath deeply and calm down really feels good )

Unfortunately nothing of this breaks the cycle as it looks but I believe this is why attacks are not painful anymore and don't even require further treatment. 

My theory is, as stated by others here, that way more people suffer from CH but don't notice it due to very low or non existing pain levels as their body does still down regulate some of the components of a potential chain reaction triggering of a pain escalation.

I.e they just sleep through it . I guess this never can be proven or ruled out as you would require a large randomized study across the population (which I don't think anyone would bother to get funding for)

 

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