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        New Message Board Archives >> 2003 Posts >> Her 10 versus My 10
        
(Message started by: MKenney on Apr 25^th, 2003, 7:50pm)

Title: Her 10 versus My 10
Post by MKenney on Apr 25^th, 2003, 7:50pm

I have assiduously researched this topic in both the current and archived topics. If the topic was previously discussed in 1959, please let me know, and I will remove the topic or let it slip into oblivion.

My wife has RA. Although it took a year to find the right medications, methotrexate at 1/32 the dosage used for cancer patients keeps her beast at bay. She has detoxed two or three times to participate in clinical studies where it seems like she always got the placebo. It takes six weeks for the methotrexate to kick back in.

When she has no medication, she literally cannot move. She sits in a recliner and prays for relief, 24/7. Walking to the bathroom is excruciating pain for her. I do the meals, wipe her bottom, buckle her bra, and blow dry her hair (although I refuse to try to curl it).

This is her 10.

Is her pain comparable to a Kip 10? Would you trade your headaches for three weeks of immobility? If not, is this why physicians cannot put our pain into perspective? They understand her pain because they see so many examples all the time. Since we represent only .1% of the general public, there may not be enough examples to go around.

Anyway, what are your thoughts? If you are truly creative, use your goddam smilies to build a vertical graph to compare the two sides of this issue.

Does she hurt as much as I do?

Miklos

Title: Re: Her 10 versus My 10
Post by Wendy the Brit on Apr 25^th, 2003, 7:56pm

I think I'm glad I'm not your wife

Title: Re: Her 10 versus My 10
Post by don on Apr 25^th, 2003, 8:07pm

If I'm reading your post correctly your saying that our CH pain is comparably insignificant considering the possible alternatives! I agree 110%

Miklos, the next time you get attacked get on your knees and thank your creator for just giving you a really bad headache. While your at it ask him for some mercy for your wife. I will.

You're a good man. Taking care of your partner defines what "being a man" is really all about.

Dont try doing her makeup though. Poor woman goes through enough without you making her looking hideous to! :)

Title: Re: Her 10 versus My 10
Post by MKenney on Apr 25^th, 2003, 8:11pm

When she is doing her meds, life is pretty good with only the occasional flare when she does something dumb like lifting stuff that she shouldn't or trying to clean the house in twenty minutes.

Miklos

Title: Re: Her 10 versus My 10
Post by MKenney on Apr 25^th, 2003, 8:45pm

Don, apparently I have drifted in the wrong direction. My wife's pain without medication is, in fact, a 10 for her.

What I meant is that when she walks in to the doctor's office, everyone immediately recognizes her problem. Compare that to when we go the doctor's office and they say, "Why are you here?"

My personal belief is that folks do not understand our pain because it typically has no visible public manifestation. I think our pain during a 10 headache is a 20 on my wife's scale although it doesn't last as long; it just doesn't register with the doctors because they use her scale to evaluate us.

Miklos

Title: Re: Her 10 versus My 10
Post by suzy617 on Apr 25^th, 2003, 9:14pm

I'm thinking I drank way too much tonight and dont have a clue but confused about the 1959 thing and your wife having RA?
Miklos, sorry for what your going thru, and sorry I'm not understanding. Guess I'll try to reread this tomorrow.
And Don, I love you. :-*

Nite,
Suzy

Title: Re: Her 10 versus My 10
Post by don on Apr 25^th, 2003, 9:21pm

more times than not when we go the Docs office we are not experiancing KIP 10s. They can only go by what we tell them. If your lucky enough you'll have a Doc that is knowledgable enough about CH to know what the pain is without witnessing it directly.

If you are not that lucky then it is your,our, CH sufferers, obligation to try to educate them and make them understand.

Title: Re: Her 10 versus My 10
Post by MKenney on Apr 25^th, 2003, 9:24pm

1959 was a sarcastic reference to those who might suggest that this topic has been done to death previously if only I had done the appropriate research in the archives. It's a comment I have seen before.

My wife's RA was meant to be a comparison with clusters and the rating from 1 to 10. We both have our own misery. Which is worse?

Title: Re: Her 10 versus My 10
Post by Frank on Apr 25^th, 2003, 9:27pm

You have raised and interesting question. I will compare my cluster headaches to my wife's brain injury following an auto accident six years ago.

In the days, weeks, and months following my wife's auto accident... at first she was in a coma for several weeks. Following that, she went through a period of several months where she was nearly what medical professionals call a "vegetable". At 29 years-old, she literally had to be taught how to walk, talk, eat, get dressed, read, write, brush her teeth, go to the bathroom, etc. Pretty much every day is a struggle, but she is never in any kind of physical pain.

In contrast... I only have extremely painful excruciating drop-me to my knees debilitating headaches where I cannot function when they occur. But they go away after an hour or two, and then I am otherwise normal.

So (in the eyes of a neurologist who treats both conditions)... who's condition is worse? I dunno....
I think it is wrong for doctors to compare apples and oranges that way anyway. They aren't the same.

Title: Re: Her 10 versus My 10
Post by don on Apr 25^th, 2003, 10:58pm

Quote:

then I am otherwise normal.

Of course you are Frank. Of course. :-/

Title: Re: Her 10 versus My 10
Post by andy on Apr 25^th, 2003, 11:44pm

Ok, lets talk about pain here. I have had Trigeminal neuralgia, many broken bones, sprains, microsurgery (almost lost a finger) A crushed foot, both knees are shot, sciatica, wisdom teeth yanked out, root canals, dry socket, metal stuck in my eyeball 3 times, 3rd degree burns, lots of stitches (some done by myself) and many other injuries that i have had since childhood! And all of that is no comparisson to a kip 10 cluster attack. I think a 10 is the most pain that you could ever endure and still live to tell about it. So there is no way to compare a 10 to somebody elses 10 unless you are that person. I wish painfree lives to you all ...................andy

Title: Re: Her 10 versus My 10
Post by catlind on Apr 26^th, 2003, 7:58am

Miklos,

It sure sounds like your wife has a tough life :( I wouldn't want to deal with that kind of pain all the time.
There's something about the words "it will end" that can get me through an attack. I'm sure for her, there is no end unless she gets the right med. We know a CH will go away, even if only for a couple of hours.

As for seeing our pain, I think you are right. As a general rule people can't see it, and as soon as you say headache, they think you're crazy. I have, however, gone into the clinic under attack. Barely able to walk because I couldn't see and couldn't stand still in a normal way, clutching my pillow so I had something to muffle the sounds of my screams and banging my head, and I was escorted to the Dr in a wheel chair immediately.

They could see the results of the pain. They did not, however know what it was. If the people in the clinic that day knew it was a 'headache' I doubt I would have gotten the treatment I did.

Pain is subjective, and our scale is no one elses. And thankfully, no one elses scale is mine. I have no doubt there are things that are much less painful to us, but I will take a pain that is known to any that isn't.

(now ask this question again when I'm in cycle, and my answer will likely change drastically hehe)

Cat

Title: Re: Her 10 versus My 10
Post by els on Apr 26^th, 2003, 8:18am

I am going to feel like a fool when I get an answer but my brain doesn't seem to be working this morning. What does RA stand for? I apologize in advance for my stupidity.
els

Title: Re: Her 10 versus My 10
Post by MKenney on Apr 26^th, 2003, 9:02am

Not stupid at all; I should not have abbreviated.

RA = Rheumatoid Arthritis, an autoimmune disease. Like clusters, every patient needs his or her own set of "tuned" medications. It takes six to twelve weeks to determine if a drug is effective which is why it took almost a year to determine that methotrexate would work for her. In general, it is not a first choice medication due to its potentially long term consequences.

Miklos

Title: Re: Her 10 versus My 10
Post by Ree on Apr 26^th, 2003, 9:27am

All I can say is "God Bless Us Everyone"~~~ Miklos you are a wonderful man for caring as you do for your wife... she is lucky to have you... I hear what you are saying and I know because I have Migraine that doctors address my condition because as you say there are more examples of it... there are more Migraine sufferers... My husband deals with CH as you do... though we are blessed with a doctor that understands CH immensely. He is still in the minority of the conditions she treats. In a big medical center that she works in and being the Neuro that she is, she only has 6 "Real CH patients" as she says. I think we have moved in leaps and bounds in this Cluster World... years ago they didnt even know what was wrong with Dave... It wasnt til I researched and researched did we find the help that we needed and that was after 10 or 12 years of him not knowing and living scared... When we found this site again we found more help and in numbers we can make a difference... It is up to our cluster community to help our selves to fight this affliction. To educate our doctors and tell them to come here to see CH really exists and maybe find some relief for those that they treat... thanks for what you do for your wife... ree

Title: Re: Her 10 versus My 10
Post by jonny on Apr 26^th, 2003, 9:43am

on 04/25/03 at 23:44:34, andy wrote:

metal stuck in my eyeball 3 times

Coolness!!!!

I love it when the doc comes at ya with the dremil with attached flexible hose and spinning wire brush, just picking at the eyeball with a needle didnt cut it so he got out the power tools. ;D

Got to love when he keeps telling you to "Look straight and keep your eye open" while hes got a power tool working your eyeball.....LMMFAO ;D

................................jonny

Title: Re: Her 10 versus My 10
Post by andy on Apr 26^th, 2003, 10:17am

Dude, it wasnt the power tools i was worried about. It was the bill i got later. $800 bucks 3 times, that really sucks. I got the good eye drops now so ill do it myself next time ....................andy

Title: Re: Her 10 versus My 10
Post by jonny on Apr 26^th, 2003, 10:25am

I hear ya on the doc bills, I keep telling them that it happened at home so OSHA wont pay my shop a visit.

The last time I duct taped my eye shut cause the daylight hurt real bad and I needed to get a job out on time, doc asked why I had no eyebrow.....LOL...Damn tape took it off...LMMFAO ;D

.............................jonny

Title: Re: Her 10 versus My 10
Post by andy on Apr 26^th, 2003, 10:30am

jonny, you crack me up!!! ROFLMMFAO

Title: Re: Her 10 versus My 10
Post by Ree on Apr 26^th, 2003, 2:12pm

Jonny you are just like Dave too vain to be seen in safety glasses.... Dave has also had metal drilled out of his eye... As a matter of fact be sure the doc knows if you go in for a MRI or CT scan.... you cluster heads ARE all alike... Maybe you just got dropped off on the wrong planet... somewhere in the Universe there are a whole planet full of people banging their heads and swearing with metal imbedded in their eyes............. just me bein me Ree ree

Title: Re: Her 10 versus My 10
Post by MKenney on Apr 26^th, 2003, 3:26pm

Thank you very much for the compliments. It makes me seem much nicer than I really am. However, after thirty-eight years of marriage, each does whatever needs doing. She respects my clusters and is as supportive as she can be. At least she no longer tries to sit through the night sessions with me.

Having had cataract surgery in both eyes, I am especially careful to wear eye protection when I am working, usually the wrap-around type. In fact, I've gotten so cautious that I have taken to wearing them during romantic interludes.

One week of pain free days and night! Now I can taper off the lithium, and get rid of the tremors.

Miklos

Title: Re: Her 10 versus My 10
Post by jonny on Apr 26^th, 2003, 3:47pm

on 04/26/03 at 15:26:09, MKenney wrote:

gotten so cautious that I have taken to wearing them during romantic interludes

Dude, im sorry but that has me LMMFYBO!!!!!!! ;D

Whatever works for you i guess....LMAO ;D

............................jonny

Im still laughing......LOL ;D

Title: Re: Her 10 versus My 10
Post by andy on Apr 26^th, 2003, 3:50pm

Miklos, glad to hear that you are painfree, lets hope it stays that way! Good luck on the taper of the meds. BTW, is your avatar giving me the finger? LOL ............andy

Title: Re: Her 10 versus My 10
Post by MKenney on Apr 26^th, 2003, 5:54pm

Andy, actually it is a soccer referee flippin' you a red card which is worse than the finger. Other than the fact that soccer officials don't wear black and white striped shirts, it's fun. Having received a red card, you are "sent off" and may not post for seven calendar days.

Title: Re: Her 10 versus My 10
Post by oringkid on Apr 26^th, 2003, 9:34pm

MKenney, I gotta give you credit, not many would be so supportive. And glad to hear that you are PF.

Andy and Jonny, my husband has been there done that with the metal in the eye and the drill 7 times, in fact last time they didn't get it all and now he has rust embedded in there... sheesh!

My husband also has had numerous, numerous injuries and the one that I think might have compared to CH was his putting his eye out with a stick. He actually had eyeball in hand. Believe it or not, he has perfect sight in both eyes thanks to an excellent eye surgeon. It truly is amazing that he lived to even meet me! LOL

But pain comparison is difficult. I would think that RA would be harder to bear as it is constant. I don't think I could deal with these if they were 24/7.

Sherry