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Edmond Dantes posted:Hey Trigeminal Neuralgia buddy! A BUDDY!  Yeah, it can be hard to explain to people what the headaches feel like, and getting used to them is not a pleasing thing either, but it's the only way we can get by. If you can avoid the treatments, then PLEASE do so. They can wreak havoc on your body and some can leave you worse off in the long run. I've said before, meeting someone else who has this (or any debilitating disease / disorder) is a bittersweet thing. On one hand it is so nice and refreshing to meet someone who has an understanding of what happens. On the other hand, though, you feel bad because you know what that other person is going through. Having people to talk to who understand is a great help.
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Apr 7, 2014 00:03
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| # ? Apr 19, 2024 23:26 |
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UPDATE I will be in the hospital for a few days.
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Apr 23, 2014 04:45
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PizzaThief posted:UPDATE  Hope all will be well!
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Apr 23, 2014 05:10
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Make sure you let some of the staff know your there so you can get admitted.
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Apr 23, 2014 05:34
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Hey guys, I'm alive - for lack of a better term. I'll go into some detail about everything that happened in a bit, but I need a little time first. Still some things to do. The short of it is this: Went to hospital because of pain. Pain got so bad it broke my brain. Brain was telling me things that weren't right. Had to push the reset button, twas a fright. This pastoral poem about things that shouldn't be taken lightly is brought to you by the surviving shreds of my sense of humor.
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Apr 28, 2014 21:02
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PizzaThief posted:Hey guys, I'm alive - for lack of a better term. Bloody hell, mate; glad to hear you're better; or at least well enough to give an update. Take care.
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Apr 28, 2014 21:29
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PizzaThief posted:Hey guys, I'm alive - for lack of a better term. Glad to hear you've made it through the scary part... take care of yourself!
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Apr 28, 2014 21:52
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Here, I made you guys a thing.  Thanks for being cool, you guys.
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Apr 29, 2014 01:32
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I couple months ago I went to the ER with a pain that felt like someone putting a steak knife in the side of my face every 60 seconds or so. Was diagnosed with TN, given some pain killers and sent on my way. My pain changed a few days later it went from the stabbing pain to a constant burn pain, like standing to close to a light bulb. I already suffer from RSD in my dominant arm and the pain is very similar. I feel for anyone else who suffers from either of these nerve conditions.
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Apr 30, 2014 19:23
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I find it odd that your prior medication list consists of opioids, triptans, muscle relaxants etc. but not for any medications traditionally used for trigeminal neuralgia. Is it a neurologist who is managing you right now? I have several patients with TN/variants whom I am successfully treating with carbemazepine, oxcarbazepine, lamotrigine, gabapentin etc. I do not use opioids, Fioricet or muscle relaxants in the outpatient setting as they tend to lead to dependence, but are otherwise generally ineffective. There are no medications that are helpful for acute attacks of the typical type as the pain does not last long enough for any medication to work. What I much prefer to Dilaudid PCA for acute exacerbations is an IV load of fosphenytoin: http://ekstern.infonet.regionsyddanmark.dk/files/Formularer/Upload/2011/10/Fosphenytoin%28Trigeminus%20neuralgi%29.pdf
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May 2, 2014 04:31
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I get cluster headaches so I can sympathise. Fortunately they are only debilitating for a limited period within a day, and for however long the cluster period lasts. Kind of brings out a whole new meaning to the phrase a "world of pain" because it just blanks out everything else. I've been having them less and less though, which is awesome. Don't have much to add, but here's the old wiki picture for cluster headaches which I enjoy immensely. Whole page used to be pretty "colourful", although I am fond of the pondering phrase "may be the most painful condition known to medical science."
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May 2, 2014 09:24
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Ok, Guys, Let's do this. The most recent breakthrough bout I had was a doozy, and threw me for a loop. Not quite ready to go over that, but I want to let you know I'm alive. Mr. Rhodes Nerve things are terrible. Explaining them to people who don't have them is sometimes equally painful. Low Carb Bread First of all: Thank you. This is information I will take back to my doctor with me. My neurologist and I are trying a regimen of Botox with the pain killers on an as needed basis. The muscle relaxers are to help keep my neck and shoulder muscles from getting too tight / putting strain on the nerves. Believe me, I want nothing more than to not have to take all these medicines and pills, and any of the information suggested here is always brought to my doctor. If you don't mind my asking, what kind of doctor are you? Aww, he's just helping the nice man replace his contact!
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May 5, 2014 03:35
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So..... Had a brain attack while cooking the other day. It was only when it was over that I realized the knife had slipped and tore into the top of my hand. So, hand is all sewn up now and I'm out of work for a little bit. 
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May 14, 2014 04:53
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I have (blessedly infrequent) TN and the neurologists I spoke with all recommended carbemazepine and other anti-seizure medications as a first line of defense. I did research on the disease and everything I read said painkillers didn't do much, and sometimes people get the pain back even after the surgery. Mirror therapy is another treatment people try. Don't know if any of this is an option for you, but I would definitely follow up on the anti-seizure.
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May 26, 2014 03:31
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ATP5G1 posted:I have (blessedly infrequent) TN and the neurologists I spoke with all recommended carbemazepine and other anti-seizure medications as a first line of defense. I did research on the disease and everything I read said painkillers didn't do much, and sometimes people get the pain back even after the surgery. Mirror therapy is another treatment people try. Don't know if any of this is an option for you, but I would definitely follow up on the anti-seizure. I cannot recall exactly which medication it was, but anti seizure meds were among the many I have taken in the past. The trouble with all the medications is that they all just stop working after a point. For myself, it has become more about dealing with the pain emotionally- fighting the anger and depression that will run rampant when unchecked. If you can quiet the pain enough to just deal with it while you live your life, you notice that you still get to live your life, even if for a short while. For whatever that's worth.
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May 27, 2014 05:03
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I've been having a lot of nightmares as of late. I'm not sure if it's the medication, the constant thunder storms or my own ongoing crazy, but they've been wreaking havoc on my fragile little mind. I felt the need to share the most recent one, because it relates to everything here. I'm trapped in a maze with three other people. We all know each other is there, but cant find one another, but that's the least of our worries. Trapped in the maze with us is an invisible old woman - who's touch will forever burn your skin. If you see her eyes, she will possess you and rot your body away from the inside out. If she sees you, you will hear her singing a limerick in your head. If she finishes the limerick, she gets you, and that's it. "The whispers in your head, my dear, the whispers I do hear. The thoughts you have are oh, so loud, they're far too much to bear. In here, I rule your body now, your thoughts remain despair. What's left now of your soul, my dear, is hardly but a glare. Oh what a noise the mind makes, the mind makes! Oh, what a noise the mind makes, the mind makes!" She repeated this in a sing song voice over and over and over. I woke up screaming and scared the crap out of everyone here. I know in the end it's all about my feelings of helplessness against a disease I cant see or control eventually killing me, but drat, brain, couldn't you have worked this out in another - far less frightening way? Oh, what a noise the mind makes...
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Jun 1, 2014 19:38
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PizzaThief posted:I've been having a lot of nightmares as of late. I'm not sure if it's the medication, the constant thunder storms or my own ongoing crazy, but they've been wreaking havoc on my fragile little mind. Your brain spontaneously came up with a poem during a nightmare? Are you sure that you didn't hear it before somewhere or come up with it after the fact? Poems usually aren't things that just flow out and are completed all in one go.
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Jun 1, 2014 21:26
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Ytlaya posted:Your brain spontaneously came up with a poem during a nightmare? Are you sure that you didn't hear it before somewhere or come up with it after the fact? Poems usually aren't things that just flow out and are completed all in one go. I spent years studying acting, writing, and improvisational acting. There was a point where I could improvise Shakespeare (in as much as one can). I have a variety of different weapons chest character voices that will go into auto pilot and will go on long rants with ease. It was my thinking that the part of my creative brain that does that was also in effect during the nightmare. Granted, I wont completely discount the hindsight effect / the false memory effect. It was a terrifying nightmare and my mind may have filled in a blank or two afterwards, but as I remember it, that is how it occurred.
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Jun 1, 2014 22:37
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PizzaThief posted:rad poem drunk me thinks this is rad and wants you to know thanks 
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Jun 2, 2014 15:20
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Click Beelay posted:drunk me thinks this is rad and wants you to know thanks  Side note: I'm actually going to work that nightmare onto the book I'm writing.
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Jun 3, 2014 04:02
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Well, today is my birthday. Would you like to know how I'm spending it? No, we don't care. Tough titties, I'm telling you anyway. After a stolen identity and a bank freaking out, I now somehow have less than zero dollars to my name. While the bank works out what money I can get back, I have only a few dollars petty cash to live off of. This means I have two choices. 1. Get the meds and don't eat. 2. Get food and stretch the meds out until the money tree grows back. (optional 3. Sell my body to the night.) While the headaches have thus far been manageable, the added stress of the situation, combined with potential lack of medication and physical sustenance have complicated matters, causing another breakthrough to come. I can feel it on the horizon... ...like an oncoming storm of pain and crankiness... If you'll excuse me, I'm going to scrape together whatever change I have left and get myself a piece of ice cream cake. It's my birthday, drat it! ...man option three is looking better all the time...
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Jun 11, 2014 16:59
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| # ? Apr 19, 2024 23:26 |
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hAppy birthday, man
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Jun 11, 2014 17:04
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