Hi All,
I know that there is never a good time for pain, but I feel like I don’t need extra pain right now. In 1 week I am supposed to move back into college. I am terrified…people don’t understand. I thought I could handle it, but then yesterday I was at my uncles party and it was a show. I couldn’t stay in the theater because the noise. I ran out and plopped down at the table. At intermission everyone came out and kinda stared…they asked to call “the squad” but I was like NOOOOOOO. uGH, I guess I am just really frustrated and scared. The pain was at an ok level, but since yesterday it has just been way worse. The meds are taking a toll on my body too… I am afraid about school and meds. I have to keep a certain gpa to stay in the program…
I know the pain will calm down and somehow I will find the strength inside to get through.
Hi Ally. I’m Susan, 28 and Atypical TN.
When I was first diagnosed last year in August 09 I can’t believe how rapidly the pain progressed to a point where it was unbearable.
So unbearable in fact that I had to come to the realisation that it was too much to handle. I was supposed to be opening an Art Gallery this year. I have a degree in Art History and Philosophy, and over the summer I was completing my Diploma in Business while going through a business mentor programme… then this thing called TN hit me… and everything got out of control.
The meds, the pain. I had to pull out of my course. I can’t drink alcohol. And there is no way I’m able to open a gallery buddie! The stress! Geez, I can just imagine it.
So, I had to pull out of my course, and it took me months to come to the realisation that i wouldn’t be opening that gallery… i had worked for years… i still get choked up about it.
But the thing is, physically, and emotionally i just can’t handle it. And i needed to accept that. I’m not saying that this is your reality, but i think we need to know our limits and work within them.
I’m 6months down the line now, off the couch (Tegretol) - I still have pain, still not capable of the Gallery but I do believe that these changes that happen may just point you in a new direction that is more fullfilling than you thought.
I don’t know what that is for me yet, but I do know that I’m a lot better off for taking the time out, giving my body a break - i was able to complete the Diploma by the way, this June. Through better meds. (Topamax)
I hope with time I get better, and stronger. This is my story of course, I’m just saying that you can always plan for another day.
Wishing you well xx Susan.
Susan-
I know school will always be there and that my health is more important. I think the problem is that I don’t want to accept it. When the pain gets really bad all I want to do is sleep…I want to move on with my liffe, but TN just keeps holding me back. I guess I am just frustrated over it. I am going to try and go back to school. I am only takign 4 classes and if that seems too much I will drop one. I just feel so useless if I am not doing anything…or accomplishing anything.
Did people understand and support you in choosing to hold off on opening your art gallery?
Thanks for your response : )
Ally i really know how u feel…Just last month i feel TN got the best of me.I had to stop working.I am a nurse who take care of the elderly(and i love my job dearly)I am also a mother of 3.I feel TN and the meds has knocked me down.And i am one that usually dont fall down without a fight.Tn has taken me from being a mother a nurse and most importantly the person who i use to be.
I find it hard to find support from people that dont understand what it is ur going through.It is Frustrating stressfull and god some days i feel so hopeless.
On a better note thou just know u aint alone u have people on this site that know what ur going through
HUGS
Marina-
Thank you! You are right. I agree…the person I am today, is not who I really am. I just don’t want to let TN win and take over me both mentally and physically. ya know? I just wish I could do something else so that I was in control a little bit more. I am going to be 21 on monday so I have of living left to do!! and I have big dreams!!
marina said:
Ally i really know how u feel…Just last month i feel TN got the best of me.I had to stop working.I am a nurse who take care of the elderly(and i love my job dearly)I am also a mother of 3.I feel TN and the meds has knocked me down.And i am one that usually dont fall down without a fight.Tn has taken me from being a mother a nurse and most importantly the person who i use to be.
I find it hard to find support from people that dont understand what it is ur going through.It is Frustrating stressfull and god some days i feel so hopeless.
On a better note thou just know u aint alone u have people on this site that know what ur going through
HUGS
Hi Ally, acceptance is key i think - managing the pain and not letting the pain manage you.
I didn’t really talk to people about the fact that I had TN in the beginning, I just kept trucking on until basically i hit a brick wall and was forced to pull out of my studies - the pain was so bad, and i had really overdone it.
I got to the point where i just couldn’t concentrate/read etc so i just physically and mentally had no control over what was happening. I knew it was coming too - i don’t think that the people around me expected it though, i had been putting on such a front - i rarely complain about the pain i’m in, i hate feeling sick!
But in the end, it was just too much to cope with and i had to accept i was in pain.
I truly do believe that pain management is key - from our diet, exercise, medication, low stress, recording everything we talk about with the doctor, research etc, etc so i think if you ensure that your health comes first whilst away at college - say, a good diary, some form of exercise thats going to keep the stress levels down during the week (yoga/pilates/meditation) and a good diet than those are things that could really help you while you’re away. And don’t be afraid to lean on people, call home and say you’re having a bad day/finding things tough sometimes - you definately need to talk to people about things (don’t be like me - its always best to get things out).
Wishing you well and I hope you’ve had a great 21st Ally 
I can sympathize with all of you and wish I could control my emotions better when it gets the best of me. I am due with kid #4 in 7 weeks and my oldest will be 5 in Sept. I am scared that I won’t be able to handle it emotionally…I was checked into the hospital for pain this past weekend because the pain was so severe. Susan, I read on your response that you said you can’t drink alcohol…why? Just curious, because I used to be able to until I got this. Now my head blows up and the pain in so intense. I was just wondering if that is how you feel. I have never been perscribed an antidepressant to go along with my anti-convulsants, but am going to suggest it to my doctors this week. I am wondering if it will help with the pain, but also with my feelings when I do go thru episodes of terrible pain. By nature, I have always been a very happy go lucky person, and I feel that this last year, I have just let the pain me down in so many ways. Does anyone else have luck with antidepressants with pain or emotions in general? Just curious. Thanks - Katie
Susan said:
Hi Ally. I’m Susan, 28 and Atypical TN.
When I was first diagnosed last year in August 09 I can’t believe how rapidly the pain progressed to a point where it was unbearable.
So unbearable in fact that I had to come to the realisation that it was too much to handle. I was supposed to be opening an Art Gallery this year. I have a degree in Art History and Philosophy, and over the summer I was completing my Diploma in Business while going through a business mentor programme… then this thing called TN hit me… and everything got out of control.
The meds, the pain. I had to pull out of my course. I can’t drink alcohol. And there is no way I’m able to open a gallery buddie! The stress! Geez, I can just imagine it.
So, I had to pull out of my course, and it took me months to come to the realisation that i wouldn’t be opening that gallery… i had worked for years… i still get choked up about it.
But the thing is, physically, and emotionally i just can’t handle it. And i needed to accept that. I’m not saying that this is your reality, but i think we need to know our limits and work within them.
I’m 6months down the line now, off the couch (Tegretol) - I still have pain, still not capable of the Gallery but I do believe that these changes that happen may just point you in a new direction that is more fullfilling than you thought.
I don’t know what that is for me yet, but I do know that I’m a lot better off for taking the time out, giving my body a break - i was able to complete the Diploma by the way, this June. Through better meds. (Topamax)
I hope with time I get better, and stronger. This is my story of course, I’m just saying that you can always plan for another day.
Wishing you well xx Susan.
Hi Katie,
Do you know whenever i feel i’ve got it bad i always think of those out there with TN who have children, and how difficult it must be for you - my heart really does go out to you and Marina and all of those i’ve talked to on this site who must struggle so hard with this horrible disorder.
Since I have ATN constant pain if i drink i definately get more pain/smashing headaches to the point where i just have to stop. But I’ve had the odd couple of beers - light beers only and nights out just to relax and socialise with my friends - but i would definately never get drunk.
I’m happy to give up the booze for pain relief (which i never thought i would ever say! haha). Now I defiantely can’t drink though because my GGT levels are high (livers not coping with the pain meds). I’ve been on 1200mg of Tegretol + 200mg of Topamax for a while now and i think my bodies had enough.
Tegretol is an anti-convulsant/anti-depressant and I’m sure you’ve heard that many on here have been on that. I think it actually made me quite depressed, because i wasn’t depressed in the first place - these meds can take a huge toll on you - so if you’re feeling down then definately talk to someone about it. Is there a Chronic pain support group in your area? I wish i knew of one earlier on as they have so much access to so many resources.
I was only on Tegretol in the beginning and have only been on Topamax since May. Topamax is usually used for Migraines, but its done wonders for me - and I’m coming down off the Tegretol. Now i realise that the Tegretol just wasn’t working for me at all - but you only know that when you’ve got something better, how’re you supposed to know when its all you have?
Hope this helps Katie. Best wishes, Susan.
Susan, thanks for your reponse…and Ally- sorry I missed your bday! I have never been put on tegretol, but that is the first thing they want to do after I have the baby. When I was on topamax I felt really good, but was dumber than rocks…so I had to get off of it. So now it’s gabapentin, but I am at the cut off on how much I can be on that. Tomorrow I try to get into the pain clinic in Sioux Falls, SD and my newest neurologist finally gave me the diagnosis of ATN, whereas I have been getting many hums and haaaas from other neurologists. So I have at least finally found someone that believes this is a real deal, it is just very rare to see in ND or SD. So I am scheduled to go to a pain clinic to see if any nerve blocks will work because he told me that is my safest bet now that I am pregnant. Then I want to really go out to Michigan to the place Ally went and meet with Dr. Casey. But, yes, with the drinking…I got to that same point where it wasn’t even worth it any more cuz of the pain…what a crazy crazy disease. I hate how it consumes my life. I hate how it impacts my family. Me being unhappy and in pain just isn’t fun for the kids or the husband. Sometimes when it gets bad enough I just lay there and cy and wish for my old life back. Grrr…but crying makes the pain much worse, so I just try to be tough. And to top it all off, my hobby is winemaking and I have a vineyard planted…how terrible would that be if I couldn’t even drink my own wine?! I love wine. But now I just whine. Thanks to all of you for listening and I am so grateful to be able to talk to all of you about this.
Susan said:
Hi Katie,
Do you know whenever i feel i’ve got it bad i always think of those out there with TN who have children, and how difficult it must be for you - my heart really does go out to you and Marina and all of those i’ve talked to on this site who must struggle so hard with this horrible disorder.
Since I have ATN constant pain if i drink i definately get more pain/smashing headaches to the point where i just have to stop. But I’ve had the odd couple of beers - light beers only and nights out just to relax and socialise with my friends - but i would definately never get drunk.
I’m happy to give up the booze for pain relief (which i never thought i would ever say! haha). Now I defiantely can’t drink though because my GGT levels are high (livers not coping with the pain meds). I’ve been on 1200mg of Tegretol + 200mg of Topamax for a while now and i think my bodies had enough.
Tegretol is an anti-convulsant/anti-depressant and I’m sure you’ve heard that many on here have been on that. I think it actually made me quite depressed, because i wasn’t depressed in the first place - these meds can take a huge toll on you - so if you’re feeling down then definately talk to someone about it. Is there a Chronic pain support group in your area? I wish i knew of one earlier on as they have so much access to so many resources.
I was only on Tegretol in the beginning and have only been on Topamax since May. Topamax is usually used for Migraines, but its done wonders for me - and I’m coming down off the Tegretol. Now i realise that the Tegretol just wasn’t working for me at all - but you only know that when you’ve got something better, how’re you supposed to know when its all you have?
Hope this helps Katie. Best wishes, Susan.
Hi Katie,
I’m not surprised they want to try Tegretol, from what I’ve heard Gabapentin (excuse spelling) has much fewer side effects than Tegretol - I had really bad side effects, but everyone is different and anything is worth a try. I found this info sheet you might find it informative too…
http://www.nps.org.au/__data/assets/pdf_file/0004/63184/news_60.pdf
Thats great you finally have a formal diagnosis, i’m one of the lucky ones that was diagnosed early and I have ATN too - although its not like i know much about it, only the pain i feel. If anything i’m teaching the doctors! Here in little NZ i’m something of an anomaly so i just try to write down as much as i can if anything changes or if i get a symptom i think i should bring up with my doctor because i tend to forget things that my doctors might see as important.
I’ve only read a little on the nerve blocks but there is alot of positive evidence for them - although, you should ask what ATN patients they’ve treated as when they say “TN” they’re often talking about classic TN.
I think that the ‘trying’ part of “Trying to be Tough” is actually really exhausting, it takes alot out of you. We’re always trying to think about others and forgetting to put ourselves first - it took me ages to realise that its okay to take a step back and say, you know what? I just really can’t handle this right now. And crying! The pain can be so unbearable!!! But yes, winemaking is a difficult hobbie to have with TN. Lucky for spit buckets but it doesn’t make it much fun does it?
My doctor told me the other day that the goal is that we’ll fix this and hopefully i’ll have my life back oneday soon - he said don’t give up hope. I had given up hope! I had thought that TN was it for the rest of my life… but i don’t think it will be. People do get better from this. Have hope Katie.
If we keep pushing, look after ourselves, find the right medical help. Than maybe, this misery will be over.