I'm sorry that the Tegretol is not helping you today. I hasn't helped me the three times I've tried it. Do you have any analgesics that you can take before the MRI? Is that even allowed? I can't remember! Might I suggest Anbesol or Oragel right before the MRI? I think you're in the U.K., so not sure what it's called there, but it's toothache medicine. I use it on the outside and the inside of my mouth, and while it doesn't take the pain away per se, it changes things enough to get my mind off it, even for just a short time, if that makes sense. Good luck, we are all pulling for you!
Hi Marla.
Let us know how the MRI goes, yes they also put on music for me and a screen to show the technicians. Though, I closed my eyes? It is a very very noisy machine so don’t be put off by this - its just noise - no pain caused whatsoever.
Hi Ducky.
Tegretol = liver failure for me so it isn’t for everyone.
Shouldn’t take anything without checking first, my scan was both with and without what they refer to as ‘contrast’ which is term for an injection of chemicals so they look at the brain in two different ways. It is really dangerous to recommend pain medications to another person.
Marla - if you are anxious just let them know as they may be able to give you something to settle the nerves prior to the scan! Really should talk to your doctor instead before trying anything, as I know first hand how dreadful it is when drug reactions occur!
I didn't mean to overstep any boundaries with regards to drugs! I, too, had contrast, and when Marla said Tegretol wasn't working for her today, that's all I was thinking - that maybe she could try something else just to get through the scan, but of course, only with the technician's approval, which is why I asked if that is even allowed. I wouldn't think a mild topical lidocaine, sold over the counter, would have any effect on the MRI, though. Just throwing out ideas here. I feel for her greatly, but will mind my own business with regards to drugs.
Hi Marla. Let us know how the MRI goes, yes they also put on music for me and a screen to show the technicians. Though, I closed my eyes? It is a very very noisy machine so don't be put off by this - its just noise - no pain caused whatsoever.
Hi Ducky. Tegretol = liver failure for me so it isn't for everyone. Shouldn't take anything without checking first, my scan was both with and without what they refer to as 'contrast' which is term for an injection of chemicals so they look at the brain in two different ways. It is really dangerous to recommend pain medications to another person.
Marla - if you are anxious just let them know as they may be able to give you something to settle the nerves prior to the scan! Really should talk to your doctor instead before trying anything, as I know first hand how dreadful it is when drug reactions occur!
I'm so sorry you have to deal with this alone; it's hard enough to deal with it at all so doing it essentially solo is hard for me to fathom.
My experience with this in terms of family/friend support—and I hope yours may improve like mine did—was that I was very much pursuing answers and treatments on my own until things progressed to a point where my side effects were obvious and the MVD surgery was actively on the table of options.
It was only at that point, when it became clear that I was essentially a "drooling idiot" due to the meds and legitimately considering brain surgery as a possible solution, that the immediate members of my family realized how significant of an issue I have been facing. I would say the first to really "get it," in terms of understanding my challenges, was my mother and my sister. I think their growing concern finally helped my wife open her eyes to the fact that I was struggling and beginning to sink.
Once the brain surgery became a legitimate option, then realization hit home to those in my immediate family.
That being said, even to this day, other members of my family, and the vast majority of my friends, continue to think that what we deal with are simple headaches.
For an unfortunate too many of people suffering from this, it's a very, very lonely condition.
mglen-
I feel your pain. I am seeing a dr who is a 5-hr drive away, a friend came with me this time; the whole trip she was getting multiple texts & calls from her kids & spouse:,they are really a great family. I love them all. but when I got home to a dark house, & no one there, I just fell apart. I felt so alone. so please know at least youre not alone here.
This is the first time I am hearing about this procedure. What type of TN do you have and do you know what types it can help? Do you know where I could find out more information about this? My type of TN doesn't really have options other than medication (which either does not work at all or works a little bit but the side effects are just as debilitating.) I would be interested in finding out more about this and see what kind of long term results there are.
Thanks,
Dana
Steph said:
This sucky condition certainly sorts out the true friends from the herd doesn't it - I've certainly found out who my true friends are - family included! It really tests relationships/marriages! I'm really lucky my job (Project Manager for a large Hardware company) allows me to work remotely - but even so some days the pain is so much that I either stay in bed taking drugs or pace the house with ice packs convincing myself to 'stay' in this - really hard isn't guys, to stay sane thru all this!? Not surprised this condition is called 'the suicide disease'. MRI's are a bit scary, i agree and I've had a few, but deep yoga breathing and nice thoughts will get you thru! I've just had multiple Neuromodulation surgeries which are helping keep this condition in check. Glad that I have the privalage of a good set of specialists and great private health system in Australia otherwise at $35,000 a pop they would be simply unaffordable or the wait for each surgery would simply be too long to bare. One last surgery to go thru in August, fingers crossed. So far two Neuromodulation leads in my head, one at the back of the head on the right side and one at the front of my head on the right, next is an implant in my face just near my temple where the eyebrow ends and the cheek bone starts - risky but necessary to get it right over the Trigeminal branch so it controls the source of the pain. Each Neuromodulation lead has electrodes on it that modify the nerve impulses, creating a good stimulation signal from the brain to the nerve - cool new technology that REALLY does work. All the lead electrodes are controllable via a remote, so I can up or lower the nerve signal frequencies at any time I need to - I have the battery/computer implanted under my armpit - huge surgeries, huge scars on my neck, face and body, but quite ground breaking technology that gives hope to us all that suffer from this condition - the bouts of pain, the electric shocks can be controlled by these implants - I know first hand that this is true. I empathise with everyone in this forum, its tough to stay 'in this' but there really is light at the end of the dark tunnel, its just a long lonely bugger of a journey getting there! Love and strength to all and its just great to finally be a part of this fantastic forum of friends. Steph :)
Mglen, I have a supportive husband, but there were days when I was bad that he had to go to work and so I was alone most of the day. I don't know if you are a cat lover but we have a Persian cat who stayed with me on the bed all day. Cats are easy to look after and Persians are very placid. We got ours when he was 14 months old so he was over the naughty kitten stage. He's just come in the room now wanting to sit on my knee, he's such a beautiful boy (even though he has the flat face of a Persian that looks like he ran into the back of a bus!)
I completely understand mrl. my brother and sister are both married and have children and so do most of my friends. Hang in there.
mrl said:
mglen- I feel your pain. I am seeing a dr who is a 5-hr drive away, a friend came with me this time; the whole trip she was getting multiple texts & calls from her kids & spouse:,they are really a great family. I love them all. but when I got home to a dark house, & no one there, I just fell apart. I felt so alone. so please know at least youre not alone here.
thanks for checking in. I did the brain mri without contrast but when they put the contrast in I panicked cause it's so loud and my problem with sound sensitivity-hyperacusis-I had my ears very protected but I was afraid. Don't feel too bad so far today it's only 1030 AM.
ducky said:
Hey Marla,
How did the MRI go? I bet you're glad it's over! Please let us know how it went and how you're feeling today. Wishing you all the best.
I don't have a cat-thought about it-I live in an apartment-I don't know. we'll see
Anne said:
Mglen, I have a supportive husband, but there were days when I was bad that he had to go to work and so I was alone most of the day. I don't know if you are a cat lover but we have a Persian cat who stayed with me on the bed all day. Cats are easy to look after and Persians are very placid. We got ours when he was 14 months old so he was over the naughty kitten stage. He's just come in the room now wanting to sit on my knee, he's such a beautiful boy (even though he has the flat face of a Persian that looks like he ran into the back of a bus!)
I'm glad to hear you don't feel so bad today! That's great news. Take it easy for the weekend, and know the worst (as far as tests go) is over. Take care.
Tell your Dad "Yes, it IS actually in my head," then point to where the nerve is and say "this damaged nerve is right here in my head." Also ahow him or email him or snail mail him a short summary of TN that tells that it's also called the suicide disease, because it's one of the most painful conditions a human can have. http://en.wikipedia.org/wiki/Trigeminal_neuralgia He'd only need the first section from there and maybe the picture. Then google "10 most painful conditions", and every article that comes up will include TN. My in-laws would not allow me to talk about any of my health problems either. With lupus, you have a lot, and they would push me so hard to do so much that I ended up in the hospital, then they would get mad at me for going there too! So glad hubby left me. Right then I was getting much worse, and I think the stress of their comments and their demands would have killed me.
As for being alone, I'm glad you started this discussion. I'm sorry that there are so many of us who are alone with this, but somehow it helps to know that others are alone and they do survive it, so I can too. Yesterday was a bad day emotionally, realizing my Mom just lives upstairs, but never once will she ever check on me or call me or make food for 2 when she cooks. I'm the one who checks on her and calls her and cooks for 2 when I can cook. I have been unconcsious for days from one thing or another without anyone caring. I guess that's where my faith developed. No one here with me but God, and He has helped me through it.
mglen32 said:
Hi Mitzi
I just got off the phone with my dad, he's saying it's all in my head!!! UGH!!! I just want to shoot him. lol
WOW Sheila, I am sorry for your pain. You are right I should send him some things. I did ask him to look it up, not sure if he did or not. I also have hyperacusis which is extreme sensitivity to sound and that is also something people commit suicide over. I've had two other times and it got much much better. My dad just has no empathy and even going through the hyperacusis is a struggle with him-i just don't understand him. He won't change and never will.
I have been struggling with my faith since TN and Hyperacusis started this time. Very depressed and sick and tired of being sick and tired. Can you tell me what you do to keep your faith in God?
Marla, I have to wear foamy earplug in the ear that is most sensitive. It takes the sound level down a few notches. I'll post on your page about your other comment.
I just read that link and saw the Jefferson Davis the confederate President was a sufferer, I love civil war history , now I will be looking for a biography on him to see if its discussed. Learn something new every day
wendy
Sheila W. said:
Tell your Dad "Yes, it IS actually in my head," then point to where the nerve is and say "this damaged nerve is right here in my head." Also ahow him or email him or snail mail him a short summary of TN that tells that it's also called the suicide disease, because it's one of the most painful conditions a human can have. http://en.wikipedia.org/wiki/Trigeminal_neuralgia He'd only need the first section from there and maybe the picture. Then google "10 most painful conditions", and every article that comes up will include TN. My in-laws would not allow me to talk about any of my health problems either. With lupus, you have a lot, and they would push me so hard to do so much that I ended up in the hospital, then they would get mad at me for going there too! So glad hubby left me. Right then I was getting much worse, and I think the stress of their comments and their demands would have killed me.
As for being alone, I'm glad you started this discussion. I'm sorry that there are so many of us who are alone with this, but somehow it helps to know that others are alone and they do survive it, so I can too. Yesterday was a bad day emotionally, realizing my Mom just lives upstairs, but never once will she ever check on me or call me or make food for 2 when she cooks. I'm the one who checks on her and calls her and cooks for 2 when I can cook. I have been unconcsious for days from one thing or another without anyone caring. I guess that's where my faith developed. No one here with me but God, and He has helped me through it.
mglen32 said:
Hi Mitzi
I just got off the phone with my dad, he's saying it's all in my head!!! UGH!!! I just want to shoot him. lol
Can you have pets? I'm personally allergic but I would think even a kitten would give you a reason to get up each day and a warm soul to be comforted by. Pets love you unconditionally. Just a thought.
