With our odds, we should be winning the lottery.... so how do we manage to live another 60 years?

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Permalink Reply by Melissa A. Williams on March 19, 2010 at 6:31pm

hey there is a great attachment under the forum that deals with TNand pregnancy it overjoyed me to think that having a biological child was still a possibility. long read but well worth it!

i'm looking forward to seeing peoples answers to your questions its all things i have been wondering!

Permalink Reply by Ally Castellano on May 3, 2010 at 7:08pm

AHHH! Gina, I could not agree more with everything!! I am 20, but have had TN since I was 13. After reading your post I was like "hmm sounds like me talking" I am terrified of what all the meds are going to do to me in the long run. Its not my time to think about it yet, but I want kids some day and I don't want to have to worry about meds and everything with that. Not only during the pregnancy, but after! I have a life to live, I don't want to be in a bubble. At times, I want to just be a bear in a cave! I have had 4 MVD's and I am terrified of what the rest of my life is going to be like! I have already had to give up lots because of TN. I don't want to give up the rest of a "normal life." I am currently having a really bad period of pain. I have not been able to go back to college since Thanksgiving. Which is very frustrating, but it is life. Stay strong! I am glad to know someone else is thinking like me!

Permalink Reply by Gina Berg on May 10, 2010 at 3:09pm

Ally -

I'm so sorry that you are currently dealing with such bad pain and have had to deal with this beast for so many years. It's like you had your teenage years ripped right out from underneath of you... (not that being a teenager was really that great, at least for me. I was just awkward.) It's nice to know I'm not the only one thinking this way. I can't believe you've had 4 MVDs though! I'm just thinking about getting my first one, mostly because I'm struggling to find a med that works, I hate my doctors, and I hate living my life in fear and in a bubble. The best way I describe it to people is that I'm not really living. Currently my meds allow me to merely survive. I can get by. I can finally brush my teeth, eat, and go to work and interact... none of it's easy but I can do it. I can't do the things I want to do though, I can't LIVE, I can't go out with my friends, I can't go hiking, I can't be vibrant like I used to be. I'm sure I'm preaching to the choir. I really hope that you find relief. Maybe I'm silly or overambitious but I'm not giving up until I do!

Ally Castellano said:

AHHH! Gina, I could not agree more with everything!! I am 20, but have had TN since I was 13. After reading your post I was like "hmm sounds like me talking" I am terrified of what all the meds are going to do to me in the long run. Its not my time to think about it yet, but I want kids some day and I don't want to have to worry about meds and everything with that. Not only during the pregnancy, but after! I have a life to live, I don't want to be in a bubble. At times, I want to just be a bear in a cave! I have had 4 MVD's and I am terrified of what the rest of my life is going to be like! I have already had to give up lots because of TN. I don't want to give up the rest of a "normal life." I am currently having a really bad period of pain. I have not been able to go back to college since Thanksgiving. Which is very frustrating, but it is life. Stay strong! I am glad to know someone else is thinking like me!

Permalink Reply by Martha on May 21, 2010 at 3:35pm

I am 20 and I just got diagnosed with TN. I feel like I have taken more medications in one month than I have in my whole life (a lot of medications that have really messed with my body). It’s sad but I kind of wish I would have gotten it when I was 13 when my mom and dad were there to take care of me. When this happen to me I was away at college by myself. Although my friends really did help me a ton, it was and still is really scary.
This has impacted my social life, my school work (I was on Oxycodone during my finals week. I was completely out of it) and the worst part for me my running career. I plan on running the 2010 Chicago marathon I have been a runner my whole life. TN and now Topamax has really alter running for me and I just haven’t been able to really be training at the level I need to be in order to get to the level to race in October. This marathon has been my dream for too long and I don’t want to let it go.
My 21st is coming up and I won’t be able to drink. Not that I normally drink. I guess people take for granted the very normal things in life. I think I am mostly hoping that I won’t be on these drugs for too long. I am hoping I won’t need surgery. I am hoping my life will return back to normal. That some how I’ll just get weaned my medication in a few months and my pain won’t ever return, like magic.

Permalink Reply by Erin McKeag on June 15, 2010 at 4:42pm

I have had all of these thought myself; on a daily basis. I am 23 years old; I was 21 when I got TN.

I get sick to my stomach looking at the big bottles of pills that go into my body every month. I have taken tegretol 300 3x a day neurontin 300 3x day lortab 5 3x day baclofen 10 mg when I need it. I have finally stopped taking valium, it does help though. I have tried 3 times to lower my dose and stop taking these "poisons." Every time I end up in bed for a week in unimaginable pain. Even taking the medicine I get pains atleast twice a day and can feel the aftermath (aching) for hours even whole days.

I have gotten an array of side effects and i get the run arround from the doctors because none of them know which medicine is causing them. I have had memory loss, hallucinations, sensitivity to the sun( burn very easily), weight loss, seizures, feelings of deja vu all day, apathy.

I was a very strong, fit young woman before I got into a car accident. I have a son who is four years old now and more than anything I want another child. I want to have a perfect, healthy baby and I want to do everything I can to make sure of it. How are we as women supposed to do this??? Even if I was able to muster up the strength to endure the pain for 15 months, not to mention 12 - 18 months to breastfeed, a baby gets the chemical (feelings) the same way we feel, while they are sharing our body. I am not sure I am willing to put a baby through those feelings. Or the chance of having problems. I am not discouraging anyone from having a child; these things just scare me and I think abpout them all of the time. Doctors have no answers for these fears!!!!!!!!

I have a hard time eating very much; because that is a trigger to me. I have such a hard time keaping weight on. Does anyone else have this problem? I feel like this is a death sentence! Noone can understand unless they have had to accept this as life. I have been taking cetaplex F from Standard Process to replace the minerals the tegratol depletes in my body, and have never had bad signs in my liver function tests.

We ARE too young for this !!!! I am sorry you all are going through this too. My heart goes out to all of you.

Permalink Reply by john quill on November 15, 2010 at 8:43pm

Hey Gina,

We don't have to "manage to live" another sixty years with this illness. We just need to survive TODAY.

As time goes on, even without a "cure" for the severe pain, the one thing this illness does really well, if we're lucky, is make us aware of what's important, and what can be ignored. You may find, as I did, that the list of the former items is much more concise than the list of the latter.

I no longer have the job or career or spouse, and I often do "curl up in a ball of pain" (to be honest, I probably look more egg-shaped LOL). But after nearly forty years of living with severe pain, I feel very secure in knowing what's important, and what is not. Today, I thought this day might pass like the previous few days, and that I would do nothing. But I saw your message and decided to say something.

I probably didn't answer any of your questions, and maybe I'm merely sounding utterly depressing for you and others to read, but you gave me something that I thought I could respond to. If you're in your mid-twenties, then I had already been living with this illness for over fifteen years on the day that you were born. If you told me the month and year, I could probably recall what I was doing then!

Maybe it was Summer of 1984, when I was a Camp Counselor among a large group way up in the Rocky Mountains. I remember that I had a severe episode of nerve pain during the latter part of the week, so the kids I was supposedly in charge of ended up trying to take care of me! Quite a few of them wrote to me for years and years to follow, and today, it is THIS that I remember the most, not the episode of pain (and it was severe; they nearly summoned a helicopter!).

You're young, and medicine has progressed a lot since I was your age, so by all means, keep looking for a solution to your suffering. But we don't need a "cure" to have a life worth living. Be easy on yourself. Don't use up all your energy looking for the magical fix; take some time to live NOW in spite of the illness. I wish you the best.

Thank you for posting something that gave me an opportunity to at least try to do something meaningful today. I know you posted your words quite a few months ago, but I don't log in that often, and just saw your message tonight. I hope you're doing well! (jqt)

Permalink Reply by Alisa Pochodzay on December 12, 2010 at 12:02pm

 

I have recently had this TN (Typical and Atypical) monster dropped in my lap, and where as most others have had Careers to handle along with this monster I ‘m a housewife (age 25). This dose not mean I don’t have my own set of issues, just that the hours of my day are maybe easy to manage then those with a career?

I had some insight before having a Dr. at an emergency to me that it was TN that I was suffering from, what a lovely thing the internet is….great for researching the symptoms you are suffering from. So being told IT was TN was not a shock, though I was tearful at the time. Now the second worst thing next to having TN was the fact the we lack insurance, and TN is something that needs close watch over by a Dr, and a set of meds to control it. It was lucky that we were approved for medical assistance through the hospital emergency room we went through.

From around November 10^th to November 24^th I had dealt with the pain on my own and just assumed it was TN on my own. On the 24^th was the day I decided I needed to know what it was for sure, and the pain was just a bit too much for my own dealing. The ER doctor confirmed it was TN ( without my saying my thoughts) and he gave me a prescription for TEGretol. I went home and the next few days with me taking the new med the pain stepped up a notch. Yet again I was forced to go back to the ER. ( This is where I let you know that no family Dr, / regular Dr. will see me due to lack of insurance.) this time the pain was getting more out of control and the ER Dr. gave me steriods and Vicadin. Now without going into every detail about all 5 times I was in ER looking for every or anything that would ease my out of control, unreal pain the only thing that was working in the end was Percocet.

The day before I was to see a neurologist (December 10^th) I was popping 2 percocet every 4 hours and praying it would ease my pain. This was ontop of 1000mg of TEGretol, and two muscle relaxers 2 times a day. A good day for me was one were I spent little time awake and so drugged up that I did not care about whatever pain I was having. I was thankful to have my mother in law in town to take care of everything…my 5 year old daughter, cleaning, cooking

The 10^th I was finally into see the Dr. who was going to really be of any good to me, and he was. He drilled me of all my past medical (longer list then I thought) history, and of all my current issues with my pain and what I was told was TN. He told me TN had to be a thing of exclusion so I’m currently waiting to get a head scan to make sure its not something other then TN. He also looked over everything the ER Dr.’s had put me on over the time passed, and took me off everything even my Percocet which was the only real thing taking any of the pain away. What he did put me on however has turned out to be more then I could ask for in a drug. I’m taking my 1000mg of TEGretol and Fentanyl pain patch. I’m thrilled to say I’m 100% out of pain…which I was starting to thing I never going to have. The only side effects I can talk about is dry mouth, and some tiredness.( from the Fentanyl patch) The TEGretol least with the amount I’m on makes me scatter brained, and I walk like a drunk. ( I need assistance from my spouse when walking around in public). In all I cannot really complain….I’m thrilled really just to be out of pain.

The rest of my TN story is still going on, and waiting on this head scan.

Permalink Reply by Amy S. on March 17, 2011 at 12:37pm

Gina and all,
I know exactly how you feel. The past four years of my life have been absolute hell. I was diagnosed in the first semester of my freshman year in college so my complete college experience was impacted by this stupid disorder. I was on obnoxious amounts of medication. They tried every kind of nerve medicine with different dosages. I was getting immune to the pain medication so I was having to take dilaudid and straight morphine to even get me to break through the pain. I wanted to do the surgery (MVD) two years ago but my parents were too scared something bad would happen during the surgery since it was so invasive. We looked at all the other options, more meds, glycerol, botox injections, the balloon, gamma knife etc. We decided to go with the meds to see if we could find some kind of solution, some kind of combination that would be manageable. I ended up with 9-10 pills a day.. not even counting pain medicine.

But it got worse and worse and eventually I was making trips to the ER where they were giving me enough pain medicine that I was on a breathing monitor because the pain medicine was supressing my respiratory system... but I was still screaming. It was the most unbelievable thing that we had to deal with so finally I convinced my parents that I couldn't deal with this anymore and I had to exhaust all my other options before resigning myself to the idea that this was just something that I would have to deal with forever. When I researched the medicine it basically said that it killed my liver and had all kinds of bad side affects if taken for a long time. And since I'm so young I wasn't able to accept that. Plus I wanted to have a family one day and tegretol is really bad for pregnant women apparently.
So I went back up to Duke (my neurologist/ neurosurgeon were up there) and said that it was time for the surgery. We scheduled it for January 6, 2011 BUT once I got up there they found I was sick, my white blood cell count was through the roof and I had three different infections. So I was quarantined at my house for 2 weeks then had the surgery on Jan 20th.
Not that it works for everyone, but man did it work for me. I have a COMPLETE new lease on life. I chewed gum for the first time in four years... ate a steak... ate ice cream. Random little things.
For me, I wanted to try EVERYTHING before I resigned myself to taking the medicine for the rest of my life. Because since we're so young- we're at more of a risk to have the side affects since we'll have been taking the medicine for longer and longer.
What it came down to for me were 4 things:
Am I okay with destroying the rest of my body for the rest of my life?
Do I want to be dependent on pain medication for survival?
Can I accept that the surgery might have a bad affect on me... or may not even work?
Do I want to risk getting pregnant and my unborn child having to deal with all of the chemicals from the medicine?


My answers were no, no, yes and no. As young people we have a higher chance at coming out of the surgery with no complications so I decided it was a last resort and if it didn't work- well at least I tried. And hey it worked so all is well with me. But looking back I don't think I could've lived with myself if I didn't at least try because there's always that chance that it will work or halfway work or kind of work. And anything was better than what I was dealing with.


Best of luck to all,
Amy