State of Mind

General General TN & GPN (Old Site)
1

I don't think I'm alone here, but I don't see much comment on how, psychologically, ATN suffers get by. So I'll say for me the resultant depression/anxiety is as bad as the pain/ nausea. Living with this pain continually is at times claustraphobic. You just can't escape it, it is in your thoughts almost continually. Every action is qualified by this condition. Easy to say "don't let it rule your life", but the damn thing does. To be polite and function like a "normal" person requires a huge mental effort... you can only maintain that happy smiling face for so long, until you're mentally exhausted,then you collapse back into your house of pain. The thought of a life time of this is just too much. On occasions where I just get to the end of my wits, I take as smaller dose of Endone as I can get away with. And can you guess what happens then??? The old me resurfaces ( a happy creative person ) ... and it then upsets me to the point of tears that what I'm feeling, is what "normal" is like.... a normal that I probably won't attain with some drug. And then only for a few hours. I get to see from the normal person's perspective how truly aweful my usual life is. ( I've suffered with this since 2005).

My approach... try to live on an hour to hour basis. Do things one at a time... Most importantly on the odd occasions when I get some ease, be it drug related or just a brief remmision, to do what I want, how I want to do it, with who I want to do it.... in other words concentrate on myself and my enjoyment in these brief hours off. Social expectations can go to Hell. Obligations, family stuff, etc. can get lost. On a day to day basis my quality of life is so low you can hardly call it living. So when I feel the least bit normal, that is my time! ( Put the smily face here...)

2

Hi Craig,

I'm not sure if my response speaks to what you are saying here but the reason that I logged on tonight was to ask about the sudden onset of depression.

Sorry, but the pain is not continual for me at least not to the degree that it affects my every day living. However, over the past month I have had break through pains in a different location. It's the electric shock like pains. If I get one it stops me in my tracks. However, lately I have been getting them back to back. When that happens my spirits drop. I feel like something happens to me physically and I get down. I try to fight it but I can't. When the pain get bad I can't help but cry, not because of the pain but because of the depression and the way I feel emotionally.

Am I just being silly? Am I imagining this?

It's ok to say that "Aleida you are just being silly. That is all in your head." I will be ok with that. I just need to know if this is normal or not for those that deal with this condition.

3

Hi Craig, your approach is what many of us do here, try to live hour by hour, day by day.
While our pain is uncontrolled it can be excruciatingly difficult to get through/by, when we do get relief, it’s almost met with hesitation and disbelief and sometimes so short lived we don’t even really get to enjoy it.
I don’t even remember normal…( it’s been a rough year trying to find relief)

BUT I do have hope…
Im glad you make the most of YOUR time, ; ) when you have it.
I think it’s so important that we acknowledge our feelings, the good, the bad and the ugly!
(((( hugs ))))
Mimi

4

I agree Craig, it is the psychological impact which is just as hard to bear. I feel for us all. I am however , heartened to read all the caring responses you have had, so good to know we all care :)

5

There is hope .....

Gene That Controls Chronic Pain Identified

ScienceDaily (Sep. 9, 2011) — A gene responsible for regulating chronic pain, called HCN2, has been identified by scientists at the University of Cambridge. The research, published September 9 in the journal Science, opens up the possibility of targeting drugs to block the protein produced by the gene in order to combat chronic pain

Approximately one person in seven in the UK suffers from chronic, or long-lasting, pain of some kind, the commonest being arthritis, back pain and headaches. Chronic pain comes in two main varieties. The first, inflammatory pain, occurs when a persistent injury (e.g. a burn or arthritis) results in an enhanced sensitivity of pain-sensitive nerve endings, thus increasing the sensation of pain.

More intractable is a second variety of chronic pain, neuropathic pain, in which nerve damage causes on-going pain and a hypersensitivity to stimuli. Neuropathic pain, which is often lifelong, is a surprisingly common condition and is poorly treated by current drugs. Neuropathic pain is seen in patients with diabetes (affecting 3.7m patients in Europe, USA and Japan) and as a painful after-effect of shingles, as well as often being a consequence of cancer chemotherapy. Neuropathic pain is also a common component of lower back pain and other chronic painful conditions.

Professor Peter McNaughton, lead author of the study and Head of the Department of Pharmacology at the University of Cambridge, said: "Individuals suffering from neuropathic pain often have little or no respite because of the lack of effective medications. Our research lays the groundwork for the development of new drugs to treat chronic pain by blocking HCN2."

The HCN2 gene, which is expressed in pain-sensitive nerve endings, has been known for several years, but its role in regulating pain was not understood. Because a related gene, HCN4, plays a critical role in controlling the frequency of electrical activity in the heart, the scientists suspected that HCN2 might in a similar way regulate the frequency of electrical activity in pain-sensitive nerves.

For the study, the researchers engineered the removal of the HCN2 gene from pain-sensitive nerves. They then carried out studies using electrical stimuli on these nerves in cell cultures to determine how their properties were altered by the removal of HCN2.

Following promising results from the in vitro studies in cell cultures, the researchers studied genetically modified mice in which the HCN2 gene had been deleted. By measuring the speed the mice withdrew from different types of painful stimuli, the scientists were able to determine that deleting the HCN2 gene abolished neuropathic pain. Interestingly, they found that deleting HCN2 does not affect normal acute pain (the type of pain produced by a sudden injury- such as biting one's tongue).

Professor McNaughton added: "Many genes play a critical role in pain sensation, but in most cases interfering with them simply abolishes all pain, or even all sensation. What is exciting about the work on the HCN2 gene is that removing it -- or blocking it pharmacologically- eliminates neuropathic pain without affecting normal acute pain. This finding could be very valuable clinically because normal pain sensation is essential for avoiding accidental damage."

This is Biotechnology and Biological Sciences Research Council (BBSRC) and EU funded research.

Share this story on Facebook, Twitter, and Google:

Other social bookmarking and sharing tools:

6

Thank you Jacob. I really appreciate your words of encouragement.

jacob said:

at aleida its perfectly kind too cry ...it will bring you closer to your goal of find a cure that works for you sweet pea...i got your back

7

Since I have had my mvd, I am feeling more like myself again, even friends notice my voice is different, but I do remember those days of crying and wondering if my life was going to be a constant round of meds that sucked the life out of me and made me a zombie that couldnt even drive a car.

Since I have had TN, i no longer like to be touched, its weird but hugging or anything like that really freaks me out. I was always claustrophobic but it has gotten so much worse. I am afraid every day that I will not be able to function again, I am going back to work next month if all goes well which will be 2 months after surgery, and I am scared to death that I wont be the same on the job. I deal with people all day and an insurance adjuster and I am so afraid that if someone goes nuts over a scratch on thier car, I may lose it. Until you have this, you dont realize how bad things can be.

I think living with this, wether in remission or not is a day to day struggle, but so is life, this is just a different chapter.

Hope you are well today

Wendy

8

Craig, You are certainly not alone. I am new to the whole TN thing, but the mental aspects of it are definitely as bad if not worse than the physical for me. Even worse is how I see it affecting my children. My little girl cried last night because she misses me and I was sitting right by her. When I think about being trapped in this I feel I will go crazy so I just don't let my mind go there and I keep researching and having hope. And like you try to enjoy those brief times when the medicine is wearing off and the pain is not too bad. There are a lot of really smart, quality people here, I'm sure we can figure it out if we can keep the dialogue going and be open to all ideas, and support each other through the hardest times. There is hope. There is a solution to every problem, sometimes it's just around the corner.

9

Hi Craig,

Thank you for being so real and open with all of us. I know the mental and emotional anguish you're talking about and my pain is managed fairly well by Neurontin right now. If I was in constant pain, I don't know how I'd deal with it. It's hard to stay continually positive, think good thoughts, etc. It takes major effort on the difficult days and sometimes it all becomes too much. You are not alone!

Thanks for sharing. It reminded me that I'm not alone.

Big hugs,

Vicki

10

Wow, this is very hopeful, El! I wonder how long it will take for them to get this on the market?

elstep said:

There is hope .....

Gene That Controls Chronic Pain Identified

ScienceDaily (Sep. 9, 2011) — A gene responsible for regulating chronic pain, called HCN2, has been identified by scientists at the University of Cambridge. The research, published September 9 in the journal Science, opens up the possibility of targeting drugs to block the protein produced by the gene in order to combat chronic pain

Approximately one person in seven in the UK suffers from chronic, or long-lasting, pain of some kind, the commonest being arthritis, back pain and headaches. Chronic pain comes in two main varieties. The first, inflammatory pain, occurs when a persistent injury (e.g. a burn or arthritis) results in an enhanced sensitivity of pain-sensitive nerve endings, thus increasing the sensation of pain.

More intractable is a second variety of chronic pain, neuropathic pain, in which nerve damage causes on-going pain and a hypersensitivity to stimuli. Neuropathic pain, which is often lifelong, is a surprisingly common condition and is poorly treated by current drugs. Neuropathic pain is seen in patients with diabetes (affecting 3.7m patients in Europe, USA and Japan) and as a painful after-effect of shingles, as well as often being a consequence of cancer chemotherapy. Neuropathic pain is also a common component of lower back pain and other chronic painful conditions.

Professor Peter McNaughton, lead author of the study and Head of the Department of Pharmacology at the University of Cambridge, said: "Individuals suffering from neuropathic pain often have little or no respite because of the lack of effective medications. Our research lays the groundwork for the development of new drugs to treat chronic pain by blocking HCN2."

The HCN2 gene, which is expressed in pain-sensitive nerve endings, has been known for several years, but its role in regulating pain was not understood. Because a related gene, HCN4, plays a critical role in controlling the frequency of electrical activity in the heart, the scientists suspected that HCN2 might in a similar way regulate the frequency of electrical activity in pain-sensitive nerves.

For the study, the researchers engineered the removal of the HCN2 gene from pain-sensitive nerves. They then carried out studies using electrical stimuli on these nerves in cell cultures to determine how their properties were altered by the removal of HCN2.

Following promising results from the in vitro studies in cell cultures, the researchers studied genetically modified mice in which the HCN2 gene had been deleted. By measuring the speed the mice withdrew from different types of painful stimuli, the scientists were able to determine that deleting the HCN2 gene abolished neuropathic pain. Interestingly, they found that deleting HCN2 does not affect normal acute pain (the type of pain produced by a sudden injury- such as biting one's tongue).

Professor McNaughton added: "Many genes play a critical role in pain sensation, but in most cases interfering with them simply abolishes all pain, or even all sensation. What is exciting about the work on the HCN2 gene is that removing it -- or blocking it pharmacologically- eliminates neuropathic pain without affecting normal acute pain. This finding could be very valuable clinically because normal pain sensation is essential for avoiding accidental damage."

This is Biotechnology and Biological Sciences Research Council (BBSRC) and EU funded research.

Share this story on Facebook, Twitter, and Google:

Other social bookmarking and sharing tools:

11

Thanks for sharing Craig.... I can't tell you how many times I have felt exactly like how you describe.. being exhausted from trying to be normal. @ Right on!! Mimi.

12

Thank you all for the absolute flood of support, and giving me your experiences. It helps to know I'm not alone with this mental hell...

And the only thing remaining after Pandora opened her box? Hope.

13

Interested to read your increased incidence of claustraphobia. I have little doubt ATN magnifies it. I am / was a little bit claustraphobic, but it was generally always manageable. You can avoid getting into, say a lift, but you can't get away from this malaise! Rules your world, is your world. ( Welcome to my house of pain!! smiley face ) Pleased things look like improving for you! Thanks for your thoughts.

crashgirl said:

Since I have had my mvd, I am feeling more like myself again, even friends notice my voice is different, but I do remember those days of crying and wondering if my life was going to be a constant round of meds that sucked the life out of me and made me a zombie that couldnt even drive a car.

Since I have had TN, i no longer like to be touched, its weird but hugging or anything like that really freaks me out. I was always claustrophobic but it has gotten so much worse. I am afraid every day that I will not be able to function again, I am going back to work next month if all goes well which will be 2 months after surgery, and I am scared to death that I wont be the same on the job. I deal with people all day and an insurance adjuster and I am so afraid that if someone goes nuts over a scratch on thier car, I may lose it. Until you have this, you dont realize how bad things can be.

I think living with this, wether in remission or not is a day to day struggle, but so is life, this is just a different chapter.

Hope you are well today

Wendy

14

HI Aleida, thanks for taking the time to reply. This depression thing can just creep up on you... or leap on you from out of the bushes...and it's perfectly normal. Remember it is a chemical problem your brain has developed, it's not just "in your head". The disparity between how we are feeling versus how we should feel ( ie, normal, no pain ) is leading you into it. If you cut yourself, and ended up with an infection in the wound, you'd think nothing of going to the doctor and getting anti-biotics. So don't think you shouldn't go to the doctor and report your mental state, and get assistance, be it chemical or other. And remember and chemical route takes time to work, say a couple of weeks... ask your doctor, don't just take the pill and expect the cure within hours. Here in Australia there's the "Black Dog" institute. It's an organisation that is raising the consciousness of the general public about depression. It helps sufferers and their kin, and friends. It gives sufferers the vocabularly to discuss their situation, offers models to help get in under control. They have a great little book, starring the Black Dog, who looks like a labrador. It's a picture book, very simple... " I have a black dog who follows me every where". And it goes on with an illustrated story about how the individaul learns to get his dog to "heel"! It's a self help thing, and it's quite amusing. The Black Dog being depression. You might not ever get rid of the dog, but you can
try to make it walk behind you, not in front. Part of the story is acknowledging you have the dog.God I've raved on! The Black Dog people are on the Net, and it's a govt funded thing, so you know it's safe.. they're not a bunch of charlatans!
Aleida Johnson said:

Hi Craig,

I'm not sure if my response speaks to what you are saying here but the reason that I logged on tonight was to ask about the sudden onset of depression.

Sorry, but the pain is not continual for me at least not to the degree that it affects my every day living. However, over the past month I have had break through pains in a different location. It's the electric shock like pains. If I get one it stops me in my tracks. However, lately I have been getting them back to back. When that happens my spirits drop. I feel like something happens to me physically and I get down. I try to fight it but I can't. When the pain get bad I can't help but cry, not because of the pain but because of the depression and the way I feel emotionally.

Am I just being silly? Am I imagining this?

It's ok to say that "Aleida you are just being silly. That is all in your head." I will be ok with that. I just need to know if this is normal or not for those that deal with this condition.

15

I hate living in fear.

16

This is my first time to this site . . . and while reading all these posts, its the first time of not feeling alone.

I cried while reading Craig's message and everyones to follow!

This has been a terrible 2 months for me (I have TN2), the pain and side effects from the meds just won't give up! I honestly, have past history of mental illness, that I have battled with for years (it was gladly passed on my by family)! I was doing well for the past 2 years, not on any anti depressants . . and then WHAM, this came to kick my butt!! I feel no one around me understands my misery! I cry all the time now. I am a person that loves to sleep, now I find I can't even enjoy that!!!

I feel silly saying that I have been suffering for only 2 months while most of you guys have been for years! The strength all you must have is amazing! I guess the secret is just to take it one day at a time . . . .

17

I have the most sympathetic husband in the world, but even he doesn't understand that even when I am not in excruciating pain, it is still first and foremost in my mind. I feel like I have this little devil sitting right in the corner of my jaw under my ear whispering, "I am coming to get you." It is so consuming, that you become depressed. We all just want our lives back. Some of us are in more pain that the other, but I think that is one thing we all have in common.

18



Mrs. Nelson said:

This is my first time to this site . . . and while reading all these posts, its the first time of not feeling alone.


Welcome aboard, not that it's place to say such things because I only joined up last week!! You have my sympathy and compassion... not that any of that lessens the pain! And you're right about one day at a time... you only have to last one day. Today. And after that there's another today. And so it goes. The change from living a normal life, with plans, anticipation, progressive realisation of a worthwhile life to this living in the day I found / find quite difficult. I've learnt ot cut myself a bit of slack, and accept that this is the way it is.... and to live it. That's not to say you shouldn't be looking ahead, pushing against this demon. But accept " Oh God, I've got this!!" Certainly denial doesn't work. So I move on. It's Monday today, and here I go, starting again. Hope I don't sound too preachy, or too negative. Cheers!