More On Endep
December 7th 2009 03:33
I have been on Endep now since the end of May, roughly seven months. Last Monday, Dear Doc decided to more than double the dose. I had some 10mgs left - she said take 2 a night, making 20mg, and when those run out, start the new 25mgs.
See, you gotta understand. I know, you cant, Ive explained it to enough people now that I know, its impossible. You cant understand chronic crippling pain unless you HAVE chronic crippling pain. You cant understand cycling through drugs unless you've done it, but here we go.
Since I was about 14 years old, the pains been there. In my left temple. Pounding, throbbing. First, I got addicted to codiene. It sounds hard but its actually real easy. You take two. Then, two stop working, so you take three. Soon your taking 4 at once, three times a day. And no one tells you, that if you're treating chronic pain, thats not going to make it go away. At about this time, I got good at ignoring it, and a migraine was an occasional inconveniance, something to sleep off. Not a big deal.
By the time I was 21 the pain was sucking the life out of me. I was irritable, I couldnt sleep, I couldnt work, I didnt know what was wrong with me. I started collapsing in tears, slicing myself up, to show everyone, look, its real, this pain. See the blood? Its REAL!
And psychiatrists kept telling me it was all in my head (you think?) and when I told them, Ive had severe head injuries, I've cracked a helmet, it was just so long ago I didnt think it relevent, they said, "AHA!" and started scanning my brain. When they didnt find anything, they said it was all in my head again.
Not willing to jump on this carousel for even a second longer, I promptly went AWOL and refused to show up for any appiontments. I used a vast array of over the counter and illegal drugs to force through the pain, the panic attacks, the insomnia. I was my own drug doctor, and I made it. I got a job, I had money, and I started to put a life back together.
And it was there. Throbbing. Wriggling. What I couldnt obliterate I ignored, and I became a master of the pain thresh hold. I could ignore severe pain, work through it, be above it.
I believe, it was the end of 2007 I had my first attack.
I had just started a new job. I remember feeling disoriented and strange on the Monday - I knew, something was happening. An odd nausea, a dropping out of the guts. Sensitivity, hightened perception, and confusion and drowsiness. To prove to myself nothing was wrong, and I would NOT take a sick day, I bought a weekly ticket.
The next morning the pain was a living thing. It wrapped around my skull, forced its way into my left temple where it stabbed at my eye and down my cheek. I tried to rise and found I couldnt equalize my ears and standing upright was almost impossible. My arms and legs moved when I willed them, but too far, too fast, out of control. I stumbled out, I fed the horses, I told myself, just lie down for half an hour, and go to work. You are going to work. You can get through this, push it back, ignore it.
I lay down. My muscles were jerking like my nervous system was broken. Even with my eyes closed, I could SEE the pain, a living thing. Even in the slight sleep I managed, the pain existed in unconciousness.
Then the nausea hit in full force. I got up to go to the bathroom - no motor skills, no balance. I fell, I crawled, dragged myself to the toilet where I turned myself inside out, again and again. Pain now throbbed through every cell, every fibre of my being. Most in pain was my head, a savage wrap of thick barbed wire that started at the left temple and wrapped around my skull. The nausea got worse, the pain got worse, they fed off each other until I was sobbing on the tiled floor.
From a far off, great distance, I heard mum asking what was wrong. Through my swollen throat, I croaked, 'Hospital' and crawled back to my room where I fumbled on some clothes. Holding my head, eyes closed, I staggered to the car.
I waited in emergency, I dont know how long. I saw a doctor in a darkened room. He gave me some pills. I dont know what they were. The nausea began to subside the pain went down one, tiny, insignificant notch. The doctor pressed a referral to the nuero into my hand and sent me home to sleep.
When I woke, the temple was throbbing and stabbing, but I found this was like pleasure. Compared to what my body had just visited upon me, it was heaven. I continued to live in pain, thankful that it wasnt that OTHER pain.
Not too long after, I had another attack. Again, hospital. Again, confused doctors. You must see the nuero.
Early 2008 I saw the nuero, (see post 'The New Nuerologist') and he sent me for an MRI. Which came back normal. I survived like this for a while, seeing my new dear doc who tried an array of migraine treatment, finally settling on Deralin. (Please see, 'The Red Pill')
May of 2008 I had an attack. I was at work, I felt it. The disconnecting disorientation. Like I'm in water. Too bright, too loud. Strangeness, like I've reached out to brace myself from falling, only to find the ledge isnt there, and Im flailing for balance. I didnt make it home before it hit - I was about 100meteres from home when it slammed into my skull like a train. I staggered, I gasped, I tried to hold in my stomach, desperately trying to escape the confines of my body. When I found my bed, I slept. The attack lasted a good 12 hours. Some of it I was awake, some of it asleep.
It seemed an isolated incident. The pain was there, but in manageable - read, ignorable - levels.
Then, after the new year, something different started to happen. Along with the throbbing in my temple - which had started to lance across my face - my left cheek began to throb. And ache. My ear, which had been playing up since the attack in May, began to ache constantly, with sharp, stabbing pain. Popping it did no good, my balance did not even out. No matter what I did, the pain not only hung around, it spread, it grew in intensity, day after day. I was at the Docs three times a week, at least. Fix this! Whats happening? Whats WRONG WITH ME!!!
I had my sinuses CT'ed. It was found there is a spur in my nose, causing my hayfever allergies to progress into chronic sinusitis. This chronic sinusitis closes the left maxillery sinus, making the ear hurt, making my balance funky, as I cannot equalize ear pressure properly. And this condition is feeding the migraine. Just like dry gum leaves feed fire.
I had so many tests. Every time we thought of something new, there was a YES! We Have It! And then atest....That always proved negative.
Doc thought it might be Trigeminal Nueralgia. Some of you might remember that - it wasnt long ago. I started Tegretol and booked a nuero - my sixth.
I felt better than fine on Tegretol. I felt awesome, enthusiastic. I felt YOUNG. But then, every few weeks, I started to develop flu symptoms with no infection.
The nuero said a lot of boring stuff which boiled down to - he did not believe it was a nerve problem. He did not think Tegretol was the drug for me. He prescribed Endep, and please see post, 'endep' for that story.
That was Febuary.
Seeing this time line layed out here, I can only be amazed at how quickly one can forget horrific pain. How efficiently it is deleted from the system memory. Because, on Endep, there was none. I stopped Deralin ('No more little red pill') and dealt doggedly with the sedation side effects. Lots of times, I felt first stage migraine, and got scared, but it never came. So. I get very, very complacent. I think Im just like everyone else.
About 2 weeks ago, I did a graveyard shift, and when I got home, I went straight to bed. meaning I forgot to take my meds.
Saturday felt like first stage migraine. But what do I care? Ive had a lot of that lately. It was saturday night.....
I sat myself in front of a good movie, with a little drink, and my favourite food. After about 20 minutes, I started to think.....Hey. Im just not enjoying myself here. Whats wrong? I've got everything I need....
That was when I realized that the pain was throbbing, sucking the pleasure out of everything. I'd somehow gotten so good at blocking it out I didnt even realize it was there. But the effort of ignoring it was taking my entire strength, and there was none left to enjoy myself with. The thick wrap of dark agony, wrapped around my skull, bleeding into my cheek and stabbing my eye.
It took all weekend to get over it. I was left shaky as a newborn lamb, tottering into work completely exhausted.
And so, when I saw Doc, she upped my dose. Said I may be one of those people that has to cycle drugs to keep the pain at bay, and if the endep doesnt work, we'll try that. She also looked in my ears - cos I got stabbing pains in both now - but nothing there. She ordered a head CT, of which Ive had dozens that never find a thing, so I cant say Im hopeful that it will be a breakthrough.
I feel, a bit like first stage migraine. Bright. Sound sensitive. but no pain.
Not a bit. I feel........Something, writhing over my left temple and cheek, but it isnt pain. And its under the memory of that pain that you decide to deal with any side effect, no matter how drowsy, no matter how unnaturally happy, no matter how moody or how unreal, to prevent the pain from coming back.
Its then, you realize, you will never have a normal life. Those are your choices - to be yourself, but in so much pain you cant possibly be yourself, or be on drugs that alter you so far out of shape there is no self any more.
I used to resist anti depressants with a fervent passion. Endep is an anti depressant that has demonstarted good effects against migrane with aura. And thus it does - the pain is damped down, so very almost, not there. But when it lifts me up, and I laugh at things that used to make me shout, I say - "But this isnt me. Its not how I feel. But wait. This is me without pain. Is it really my personality? But wait. I cant ever remember reacting this way. Its not me, its not me...."
And this is why I used to resist.
But, early days yet. I've only been on 25mg for half a week.
See, you gotta understand. I know, you cant, Ive explained it to enough people now that I know, its impossible. You cant understand chronic crippling pain unless you HAVE chronic crippling pain. You cant understand cycling through drugs unless you've done it, but here we go.
Since I was about 14 years old, the pains been there. In my left temple. Pounding, throbbing. First, I got addicted to codiene. It sounds hard but its actually real easy. You take two. Then, two stop working, so you take three. Soon your taking 4 at once, three times a day. And no one tells you, that if you're treating chronic pain, thats not going to make it go away. At about this time, I got good at ignoring it, and a migraine was an occasional inconveniance, something to sleep off. Not a big deal.
By the time I was 21 the pain was sucking the life out of me. I was irritable, I couldnt sleep, I couldnt work, I didnt know what was wrong with me. I started collapsing in tears, slicing myself up, to show everyone, look, its real, this pain. See the blood? Its REAL!
And psychiatrists kept telling me it was all in my head (you think?) and when I told them, Ive had severe head injuries, I've cracked a helmet, it was just so long ago I didnt think it relevent, they said, "AHA!" and started scanning my brain. When they didnt find anything, they said it was all in my head again.
Not willing to jump on this carousel for even a second longer, I promptly went AWOL and refused to show up for any appiontments. I used a vast array of over the counter and illegal drugs to force through the pain, the panic attacks, the insomnia. I was my own drug doctor, and I made it. I got a job, I had money, and I started to put a life back together.
And it was there. Throbbing. Wriggling. What I couldnt obliterate I ignored, and I became a master of the pain thresh hold. I could ignore severe pain, work through it, be above it.
I believe, it was the end of 2007 I had my first attack.
I had just started a new job. I remember feeling disoriented and strange on the Monday - I knew, something was happening. An odd nausea, a dropping out of the guts. Sensitivity, hightened perception, and confusion and drowsiness. To prove to myself nothing was wrong, and I would NOT take a sick day, I bought a weekly ticket.
The next morning the pain was a living thing. It wrapped around my skull, forced its way into my left temple where it stabbed at my eye and down my cheek. I tried to rise and found I couldnt equalize my ears and standing upright was almost impossible. My arms and legs moved when I willed them, but too far, too fast, out of control. I stumbled out, I fed the horses, I told myself, just lie down for half an hour, and go to work. You are going to work. You can get through this, push it back, ignore it.
I lay down. My muscles were jerking like my nervous system was broken. Even with my eyes closed, I could SEE the pain, a living thing. Even in the slight sleep I managed, the pain existed in unconciousness.
Then the nausea hit in full force. I got up to go to the bathroom - no motor skills, no balance. I fell, I crawled, dragged myself to the toilet where I turned myself inside out, again and again. Pain now throbbed through every cell, every fibre of my being. Most in pain was my head, a savage wrap of thick barbed wire that started at the left temple and wrapped around my skull. The nausea got worse, the pain got worse, they fed off each other until I was sobbing on the tiled floor.
From a far off, great distance, I heard mum asking what was wrong. Through my swollen throat, I croaked, 'Hospital' and crawled back to my room where I fumbled on some clothes. Holding my head, eyes closed, I staggered to the car.
I waited in emergency, I dont know how long. I saw a doctor in a darkened room. He gave me some pills. I dont know what they were. The nausea began to subside the pain went down one, tiny, insignificant notch. The doctor pressed a referral to the nuero into my hand and sent me home to sleep.
When I woke, the temple was throbbing and stabbing, but I found this was like pleasure. Compared to what my body had just visited upon me, it was heaven. I continued to live in pain, thankful that it wasnt that OTHER pain.
Not too long after, I had another attack. Again, hospital. Again, confused doctors. You must see the nuero.
Early 2008 I saw the nuero, (see post 'The New Nuerologist') and he sent me for an MRI. Which came back normal. I survived like this for a while, seeing my new dear doc who tried an array of migraine treatment, finally settling on Deralin. (Please see, 'The Red Pill')
May of 2008 I had an attack. I was at work, I felt it. The disconnecting disorientation. Like I'm in water. Too bright, too loud. Strangeness, like I've reached out to brace myself from falling, only to find the ledge isnt there, and Im flailing for balance. I didnt make it home before it hit - I was about 100meteres from home when it slammed into my skull like a train. I staggered, I gasped, I tried to hold in my stomach, desperately trying to escape the confines of my body. When I found my bed, I slept. The attack lasted a good 12 hours. Some of it I was awake, some of it asleep.
It seemed an isolated incident. The pain was there, but in manageable - read, ignorable - levels.
Then, after the new year, something different started to happen. Along with the throbbing in my temple - which had started to lance across my face - my left cheek began to throb. And ache. My ear, which had been playing up since the attack in May, began to ache constantly, with sharp, stabbing pain. Popping it did no good, my balance did not even out. No matter what I did, the pain not only hung around, it spread, it grew in intensity, day after day. I was at the Docs three times a week, at least. Fix this! Whats happening? Whats WRONG WITH ME!!!
I had my sinuses CT'ed. It was found there is a spur in my nose, causing my hayfever allergies to progress into chronic sinusitis. This chronic sinusitis closes the left maxillery sinus, making the ear hurt, making my balance funky, as I cannot equalize ear pressure properly. And this condition is feeding the migraine. Just like dry gum leaves feed fire.
I had so many tests. Every time we thought of something new, there was a YES! We Have It! And then atest....That always proved negative.
Doc thought it might be Trigeminal Nueralgia. Some of you might remember that - it wasnt long ago. I started Tegretol and booked a nuero - my sixth.
I felt better than fine on Tegretol. I felt awesome, enthusiastic. I felt YOUNG. But then, every few weeks, I started to develop flu symptoms with no infection.
The nuero said a lot of boring stuff which boiled down to - he did not believe it was a nerve problem. He did not think Tegretol was the drug for me. He prescribed Endep, and please see post, 'endep' for that story.
That was Febuary.
Seeing this time line layed out here, I can only be amazed at how quickly one can forget horrific pain. How efficiently it is deleted from the system memory. Because, on Endep, there was none. I stopped Deralin ('No more little red pill') and dealt doggedly with the sedation side effects. Lots of times, I felt first stage migraine, and got scared, but it never came. So. I get very, very complacent. I think Im just like everyone else.
About 2 weeks ago, I did a graveyard shift, and when I got home, I went straight to bed. meaning I forgot to take my meds.
Saturday felt like first stage migraine. But what do I care? Ive had a lot of that lately. It was saturday night.....
I sat myself in front of a good movie, with a little drink, and my favourite food. After about 20 minutes, I started to think.....Hey. Im just not enjoying myself here. Whats wrong? I've got everything I need....
That was when I realized that the pain was throbbing, sucking the pleasure out of everything. I'd somehow gotten so good at blocking it out I didnt even realize it was there. But the effort of ignoring it was taking my entire strength, and there was none left to enjoy myself with. The thick wrap of dark agony, wrapped around my skull, bleeding into my cheek and stabbing my eye.
It took all weekend to get over it. I was left shaky as a newborn lamb, tottering into work completely exhausted.
And so, when I saw Doc, she upped my dose. Said I may be one of those people that has to cycle drugs to keep the pain at bay, and if the endep doesnt work, we'll try that. She also looked in my ears - cos I got stabbing pains in both now - but nothing there. She ordered a head CT, of which Ive had dozens that never find a thing, so I cant say Im hopeful that it will be a breakthrough.
I feel, a bit like first stage migraine. Bright. Sound sensitive. but no pain.
Not a bit. I feel........Something, writhing over my left temple and cheek, but it isnt pain. And its under the memory of that pain that you decide to deal with any side effect, no matter how drowsy, no matter how unnaturally happy, no matter how moody or how unreal, to prevent the pain from coming back.
Its then, you realize, you will never have a normal life. Those are your choices - to be yourself, but in so much pain you cant possibly be yourself, or be on drugs that alter you so far out of shape there is no self any more.
I used to resist anti depressants with a fervent passion. Endep is an anti depressant that has demonstarted good effects against migrane with aura. And thus it does - the pain is damped down, so very almost, not there. But when it lifts me up, and I laugh at things that used to make me shout, I say - "But this isnt me. Its not how I feel. But wait. This is me without pain. Is it really my personality? But wait. I cant ever remember reacting this way. Its not me, its not me...."
And this is why I used to resist.
But, early days yet. I've only been on 25mg for half a week.
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Comment by Anonymous
I ended up on it in a round about way. I went to an ENT after a series of middle ear infections, and he diagnosed an unrelated myofasial disorder that was causing my long term shoulder and neck tension and fatigue. I'm a grinder too, so Endep was good for that. I still grind but I don't clench as much now, and he put me on 10mg for three months, then uped the dose to 25mg.
I have a history of depression too, which I fessed up to a GP and not the ENT, so thankfully I was already on this and the GP didn't see the need to prescribe anything else for the depression when it struck again last year, (we were both in agreement going back on fluoxitine was totally unnecessary and OTT).
Where I was once tired, and yes i went through a plethora of well meaning suggestions and medical advice, Endep ended up being the answer to my long term unexplained fatigue. Now I sleep, actually sleep, and get through my day without dragging myself along. 25mg seems to be the ticket, but I totally understand what you mean, this is it, this could go on for who knows how long, until there's another way... and you do question yourself on the meds, is this me, is this how I act? Suddenly I'm more like I was when I was younger, and whether I like that or not, it doesn't seem to be something I angst about as much now. I can suddenly cope with things better. And I've forgotten what it was like to be so tired.
I hope there's a better answer for you. I feel awful for people with unexplained chronic pain. Never let them tell you it's in your head, I heard the same thing, and it turned out there was a problem all along.
Comment by Kleonaptra
Kalikapsychosis
The endep has actually backfired on me. Over the last few weeks I started to get really twisted, like I was years ago when I was having the panic attacks. Just having horrible thoughts and crying a lot. So Ive started breaking my pills in half, which the doc said I could do, and thats working really well for me at the moment.
It turns out I may have a fluid retention cyst in my sinus - they never caught it before because it would have just burst when I had a scan. Now I need more scans, an ENT and possible surgery. It should help to get rid of it, but then I'll still have chronic migraine!
Thanks for your story.