Writing on this forum while in pain--

[estre004]

This is something I've wondered about for a long time and decided to just ask you. My migraines are 2-3 times a week, and I am able to control most of them. If I can't abort them right away (because I waited too late to take something), I am usually able to within at least a few hours. This is because I am fortunate to have successful abortives (very fortunate).

On the occasions when I have to endure a migraine they are so disabling that there is no way I would be able to participate on this forum (even open my eyes) and no way would I ever be able to sleep.

What I am always thinking about while reading some of the topics (especially the ones when someone at that moment is enduring pain) how do you do it? And how do you sleep? How do you type? How do you function at all? I've always been amazed. Is it because you have endured pain for so long that you get used to it? I am literally immobile--curled in a ball with my head covered up just waiting, waiting, waiting for the pain to subside. I can do nothing else. If I was to type, I would throw up all over the key board. Just wondering.

[pen]

Linda.
Since December last year I have been in constant pain. I dont really function, hardly leave the house, mostly dont leave the couch.
I cant post on here when I wake up. I dont really surface much before 11am.
IF the triptan helps then I check the forum and my emails.
If I want to post, I type a little on a word doc and save it.
That way it doesnt matter how long it takes me and I dont stand to lose it, as has happened so many times.
My posts on here are often brief, and full of typos. If they are longer, they could have taken the whole afternoon in bits.

I have little other quality of life, so my PC is my link with the outside world.
My situation is worsening, especially with this new neck pain which is awful.
This is all I have right now.

[estre004]

Pen - That actually makes me sick that so many people can be hurting so bad and it has taken this long to even consider it as something to take more notice!!!

[pen]

Well you did ask about sleep. I do that fairly well, but because of the fibro is isnt very good quality.
If I misjudge the triptan I dont sleep...

Actually right now ,with the neck pain, not knowing what it is or how to deal with it, I am pretty low.

P

[estre004]

I really admire you for getting up and dealing the best you can.

[estre004]

OK. I just asked a question about how people on this forum are functioning at all while experiencing migraine. Now I have another question. Do any of you experience or have experienced worse pain than migraine? And if so, what? I can only think of two times when the pain was worse - one being childbirth (but with happy endings, so worth it) and one other time when I got some ash particles in my eye. All of these instances were on the unbearable side. I've experienced other pains like broken tail bone, broken back, things like that but they were bearable pain or at least a pain killer would help.
While experiencing migraine pain, I can't help but wonder how so many people can keep going that do not get relief. It is so amazing that migraine isn't taken as seriously as it should be. It is so excrutiating --for me anyway.

[pen]

Childbirth I guess, but hard to compare as I never had migraines then.
Kidney stones.
Endometriosis.
The current neck pain, whatever it is.

Cant chose, but migraine is the worst for being in my head and cant disassociate...

[Almostangela]

I work full time so I use work and this forum as distractions to make time go by. I load up on codine, stumble around and count the hours to go by. Consequently I think I suffer extra for it and wonder if my increased anxiety attacks are because of the stress of it all. I’m seeing a psych consellor tomorrow. The depression of it all has just gotten too much and I feel like I’m on the verge of snapping and not coming back this time. The worst pain I’ve had was when a bucket of lime whitewash went in my eyes as a child and I was blind for a month. That was tough because I couldn’t read or watch TV or do anything to distract myself from the pain.

Definitely works lifts me out as it is rewarding for me. If I had to sit at home, I might get the rest, but not the distraction. (maybe) It is a double edge sword. I don’t have a choice right now.

[Dawn]

Estre:

The worst was when I got my full hysterectomy, and I was immune to the narcotics, and pain medications. Nothing they gave me worked...I was begging the nurses to kill me!

To me, childbirth was a walk in the park compared to the migraines! Also, when I had a severe reaction to the indicine...oh my GOD was that terrible!

But with those things, there was always a sort of cause and reaction, which made it easier to tolerate the pain, because I knew in the back of my mind, that the pain would subside, and never return again...I hoped.

The migraines are the worst because they will come and suck the life out of you, let you barely catch your breath before it returns to start the cycle all over again.

Someone once summed up migraines perfectly: "Migraines make you feel like you're going to die, but fear that death will never come to bring your sweet relief..."

Dawn

[pen]

Angela if you can work, you have some quality....hold on there.
I thought things couldn't get worse about 5 years ago....
I wish I could have those days back....Now I cant work, or do anything much.
Hold on.
Hope you feel better after the psych.

P

[Paradox]

Unfortunately I've had to turn to daily opiods because I could not function. With it I can continue to work full time.

On bad days when Im posting you'll see a lot more errors in my posts and shorter posts. On really bad days you don't see me at all.

Other than childbirth the only pain Ive had worse than a migraine is what I base my ten on pain scale on.

I had a very large ovarian cyst that twisted the Fallopian tube. The tortion caused the ovary to be strangled. I could not walk and could barely talk until I was transferred to a larger hospital via ambulance and had emergency surgery for it.

[dawn.binks]

the only pain i had worse than a mig is a stroke. it was 100x the pain, the pain as the artery tore and caused the stroke was utterly indescribable and then thankfully i passed out!!

[milo]

I too, am on opioids making my work life possible. Without them I'd likely be off.

The only pain I have felt worse then my bad days with migraines was following a botched surgery.

I have had many broken bones, burst many ovarian cysts, had many surgeries and torn quite a few muscles (was a sports superstar once )

The only pain worse then my head was when I had a surgery to remove my ovary and the cyst growing in/on it. It ended up being much too large to do lapro, so I had open surgery. The surgeon sliced a large artery that was not where it belonged and I had a huge spill of blood within the region.

The result was horrific pain following the anesthetic.

[lentils]

I go through phases in the course of a migraine and sometimes my mind is racing but I can't do anything that requires higher thinking or judgement. So to pass the time and to keep me from obsessing about things, I go on the internet and try to find some info that will keep me from getting a migraine in the first place, since the abortives work only so so with me. I haven't gotten "stay in bed curled up in a ball" migraines in a while, but the lower level ones can be a pain in the bum, too. Especially when I think I am well enough to do something, but not well enough to something really interesting. Sometimes even doing housework is a challenge because moving my head makes me dizzy.

[Petzi]

Pen,
I noticed that you are lying low ... not too many posts from the irrepressible Pen these days.

I start to wonder if your neck pain is actually lumbago. Have you been to your GP about it? What did he say?

I get this every couple of years out of nowhere. The causes of lumbago are not really known (some say it could be a nerve that becomes trapped). Whatever might be the cause the result is out of control muscle spasms that feel like electric jolts shooting out in all directions. Usually I am barely able to move my head and cannot drive anymore because I am unable to turn my head to look left or right. More movement means more spasms, so any exercise is impossible.

It is relatively easily treated. Don't let your GP fob you off with a painkiller and a neck roll. What's needed is an injection into the affected muscles of a cocktail of muscle relaxants, painkillers and anti inflammatories/steroids.

Once on a less severe occasion I was given a couple of Diazepam (Valium) and that sorted things out. Valium isn't just an anti anxiety medication, but also a powerful muscle relaxant.

What you can do at home is to apply heat/cold (whatever feels more pleasant to you) and take a couple of Ibuprofen (Nurofen).

Be forceful with your GP. Don’t go there and ask … go there and demand!

You need to have this looked at

I hope you get better soon.

Love

P.`

[lostinobx]

Hi folks,

I have suffered for 29 plus years with these monsters. Have been on medications for nearly that long. Basically my cocktail of pain meds are what afford me the ability to work, have some quality of life and to be able to do certain things, not all, but more than I would normally be able to do without them.

I guess, all these years of having to deal with them is probably the reason that I continue to press on and try not to let them get the best of me. Until I breathe my last breath, they haven't beaten me. That is how I look at things. You have to do what you have to do in order to live and get by. It's a day by day, minute to minute, second to second thing for me.

Because of my meds, I am able to work full time. I have CDH/Migraines. Some days I don't want to wake up, but I have no other option. Most recently, I want nothing to do with anyone. Just went through divorce, moved back home with mom, at my age, have no life outside work, am clinically depressed, but plugging along.

Yes, would I rather hide from the world, of course. But, can I, no. Do I like being online when I feel like I do, for the most part, NO. But, I do what I have to do. It's some can of sanity in this unsane life that is my life.

My worse pain to date other than migraines was giving birth after my epidural wore off and it was too late to give me another one. My son didn't want to wait Although he was premature and only weighed 1 pound 9 ounces, it felt like a 10 pound baby coming out!!

Hugs!

[alli]

I've had 9 surgeries, broken bones, back problems, two children, one with no pain killers at all and the other with just a shot of something in my rear, and as painful as they were, the only thing worse than migraine pain is TN pain. Most of the time the neuralgia is bearable, but I have flares that are excruxiating. TN pain hits in many of the same places as migraine pain so migraine usually flares the TN. It really sucks. My face ends up hurting alllllll over, forehead, scalp, cheeks, jaws, eyes, nose.

I really think that decades of migraines had increased my pain tolerance so much that the other things just didn't hurt as much or as long as migraine pain. I could either handle the pain or the issue at the time responded to pain meds way better than migraines so were "easier" to deal with.

[Tngirl83]

I deal with migraine pain on a daily basis. I have chronic daily headache/migraine and my current migraine has been constant since the beginning of march. Before that I had about a five day break after a four or five week migraine. Before that was a week pain free and before that I had a migraine since June of 2009. The pain level is always at least a constant 9/10 and will jump even higher than a 10.

I also have endometriosis. I thought my migraine pain was unbearable but this pain is almost as bad. I had to have my left hip replaced last year due to a birth defect. I waited as long as I could before having that surgery. When the pain became unbearable and I could barely walk I had the surgery.

I also have some undiagnosed all over body pain. I'm a mess. I would like to trade in my body for a new model. This one isnt working out!! At least I still have my sense of humor and that helps.

I work full time and overtime that I force myself to work now just so that I can afford to pay for my doctor bills. I have had to learn to work even though I am in constant excrutiating pain. My neuro hates it and tells me that he doesn't want me to say that I deal with the pain but what am I supposed to do. He has tried every possible med he knows of and has consulted with several other docs who have no other ideas other than Botox. No meds have worked. Not even pain meds, so I can't even get relief. My only option left is Botox which I get to try at end of July. Keeping my fingers crossed.

[Ivy]

I often wonder the same thing Estre004...
When I have a bad migraine, I can't write. At least not during the worst hours, I have to wait for the abortive to work.
I admire the people here who work, participate actively to this forum, raise kids and take care of a family despite their daily pain. You're brave!

As for the other pains, my threshold is very high. I can bear most pains BUT migraine.
The point is that if I'm in pain for something else, it's "just" PAIN. When I have migraine, instead, I feel so lousy, annoyed, limited, nauseated, dizzy that I would only like to lay down and cry.

I have had a bad sciatalgia last year. Yes, it was very painful but I could bear the pain and anti-inflammatories helped. It was annoying in certain moments, but still better than migraine.

[Hal]

I have just read this entire post and it reads like a bunch of old people ready to die!

How depressing. I am not making light of everyones pain, I know it is real.

How does one function? I have had many times when the pain was so bad that all I could do was toss and turn, wishing I would die and wondering why I wouldn't, waiting for the next moment that my stomach would turn over and I would barf. Then the pain would be so bad, I would sink to the floor and hug the toilet and barf some more. What horrible, horrible pain. It is pain like no other pain.

I have had pinched nerves in my neck and back, broken bones, ruptured blood vessels, but none have caused pain as bad as a full blown migraine. Nothing compares to the type of pain a migraine inflicts, NOTHING! I don't think those that treat migraine pain fully realize that the pain is a different kind of pain from all others and how horribly excruciating it can be. There have been times that the pain has been so bad, I have thought about blowing my brains out just to get rid of the pain. I haven't had any migraines like that in a long time, but I still get many days of migraine pain and always fear that the super bad ones will come back. I almost panic when I do not have strong pain killers nearby. If I couldn't take them as soon as I feel a migraine comming on, I'm sure I would be hugging the porcelan throne puking my guts out and wishing I would die.

For those of you who do not respond to pain killers enough to take the edge off of the pain, I truly empathise. I have been there. For those of us that do get some relief to do simple things, like typing on this forum, we should feel very lucky. Just think what life would be without all of the drugs.

Hal

[Guest]

I wonder that all the time as well. I sometimes type while lying down. Sad but true. Other times not at all.

[pen]

I left the house yesterday evening for couple of hours. My neighbour got married and we went across for a while.
It was fun to be with humans, and chat. I had a few nasty moments, but kept telling myself home was right across the street.
I hoped to last an hour and made almost 3.
BUT by the time I was ready for sleep it was 2.30am.
I have little sign of migraine, but it woke me at 7am.
Stupidly (and I am often stupid) I tried some OTC.
Ended up with Triptan 2 hours ago.

How or why am I doing this? Because although it hurts it is cathartic.
It is all I can do for now. A quick 10minutes, but as the Triptan is still kicking in, I am not in fear of it not working.
It will or will not regardless of this bit of extra pain....without it I would not be here, and in a moment I will be gone.

But look what I shared. And who else can I impart this to.
My family know of course, but none of them have migraine.
They can sympathise, they cannot empathise, and because this is almost a daily thing, it is better to not keep chucking it out there.

So now, I go. And back to the ice pack and wait....

Ciao.

[Guest]

I don't know what to say. There is nothing to say. We suffer together. Why, I don't know. We may never know. Until it's over. My heart is with you.

[HeelerLady]

Well it's a distraction for me. If I can't see, well I stay off. Who knows what would be written if that was the case.

I guess I wouldn't say that the pain is the worst thing I've ever experienced. I will say that it is different. Plain just feel lousy as I get the other delightful symptoms beyond pain. Now that I'm off the crazy meds, I actually feel better. Things are still there but instead of being at a constant level 7 or 8, I get days where they are a 3.

I decided when a lot of this started that unless I was too ill to safely go somewhere, I was going to do everything I normally would. Some days the M win but other days I do. My first goal is to make it in to work more days a week than I've been managing.

I know there are others that are worse than I and I do feel for you. I wish a cure would magically develop overnight for everyone to end the pain and suffering.

[dcook60]

i've had 5 natural childbirths, two miscarriages. intense, but there's a predictible end to these, and elation for the healthy babies.

had 14 surgeries. nothing nearly as bad as my killer migraines, which last 40 hours and are so horrendous i can literally not lift my head off the pillow. when throwing up (usually for 12 hours) i often miss the bucket by side of bed.

so no, to me, there's nothing worth than migraine. until practitioners have their own personal one(s), they'll never get the severity. dianne

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