What do you do when you're down?

Just checking in to see how everyone is doing.
It’s been a little over two years since my diagnosis and this is one of the hardest battles I’ve had to endure.

I honestly don’t know what to do anymore. I would never kill myself but understand why this is called the suicide disease.

What do you all do when you get really low? My attacks have increased the past month so that isn’t helping.

Hi Kismet. I wish I had a really profound answer for you, I really do. I wish I could tell you that I pray but I'm not Religious. I wish I could tell you that I cry on my husband's shoulder but I live alone. All I can say is adopt the Scarlett O'Hara philosophy that tomorrow is another day!

I wish you every other good thing that life has to throw your way, so at least it will make every other aspect of your life more wonderful than the pain is horrid. Stay strong!

When I read this it was like reading my very own story, even timing wise. My pain at the moment is also out of control. To be honest, when I am down and that low - I cry. I sleep. I talk to my family, friends and my pets. And lastly if all else fails, I tell myself, TN may be bad - but I am not going to die from it. As awful as that sounds in a way it’s a blessing to know it can be a life long affliction but it’s not a terminal disease. It’s ok to feel low, it’s ok to cry…but please realize you are NEVER alone. You always have someone here that understands you totally. That in its self is a huge help. Sending a hug. M xxx

We all know just how you feel. We have all been there more then one can tell. Just hang in there. Mel is right, it won't kill you. When I'm really in a bad way, I go to my bedroom by myself and cry, let it all out. No knows how we suffer except someone that has it. It is the worse gosh awful pain in the world I figure God gave it to us for a reason. What ever that is. I do know sometimes I think how much can one endure. It is a tough disorder. I don't think even with all the procedures they offer we ever get over it. I know my husband doesn't understand my pain. I have had it since 1999. Had Gamma Knife then an MVD, and still in pain from Anesthesia Dolorosa and he still doesn't get it. Been married 49 yrs. this year and I feel it has torn us apart. I love him with all of my heart, but I don't feel loved anymore. I know he is tired of it, but there is nothing I can do for it. I try every drug coming down the road. Nothing helps.

Sorry, that is the first time I have said those words. I just don't feel he loves me like he should. Not mean or anything, we just live together more or less. Don't fight, have family and wonderful grandchildren and he is good to them. We just co exist. It's a tough one to live with.

Hang in there, tomorrow is another day. Hold your head up and say, someone else out there might be in worse shape then me. There is lots of suffering. I just pray that neither of my 2 son's get it. Try hard to have a peaceful day, week, month without this awful pain. Remember(I don't know how old you are), but as we age, other pains come into our lives. Unfortunately, this is the worse. Have a great day.

I’m struggling too…
These past few years have taken a toll on me, more than I care to admit, and more than anyone close to me really knows.
I’m not really sure what to do, all the things I’ve done in the past aren’t really working as well.
I guess I try several times a day to play music, music that reflects how I feel so I can release the emotions and move on in that moment.
I journal occasionally, I used to write more, but I’m tired of writing a lot of negative stuff.
I meditate often, and I try to find a few things I’m grateful for each day.

All in all I think it’s a moment to moment thing…I haven’t found a “magic” solution to get through the roller coaster ride of grief, anger, frustration, etc etc
There is comfort in knowing I’m not alone…LwTN has been an invaluable support …
Thinking of you ALL, and sending you all a gentle (( hug)) this morning…
Mimi xx

I too feel just like all the above. Only sometimes I'm not always sure this site does me any good. I can mention something on here and there are no replies. Then maybe that is better then negative ones. Each of you that have already replied sound just like me. It's just plain tough. Hang in there and hugs to each and every one of you on this site.

It is tough santafred, I could relate to your first post on this discussion a lot.
I do the same, I go off by myself and cry, hard, away from my husband & kids. I’m alone a lot too which doesn’t help, I used to be quite social so it’s been a real learning experience in isolation…but on the positive side all that time alone allows me many many hours of crying, ranting and raving where no one but my sweet dog Roxy can hear… ; )
I’m tired of talking about my health or how I feel all the time…if I’m tired of it, I’m sure my family is over it too.

Not much more to say, just know santafred, I read your posts and try to reply to them when able…I’ve pulled away a little from the site, not as active as I once was, only because of my state of mind and my struggle with the pain…
Somehow, we’ll all get through this, better days have to be ahead…

I understand Kismet however no amount of understanding from anyone makes me feel any better. Please everyone this isn't about all of the most wonderful people I could ever want or imagine. I am in so much pain (atypical on top of the TN). I have a boyfriend that I love dearly and he to me. That said I can see his reluctance to deal with my situation and pain. I so very much don't want to leave, because of this horrid condition that I have no control over. I fear life, getting out of bed, being in bed, don't know if I will be able to speak or drink or eat...another day to me is simply another day of stress and dread with hope mixed in. If I am lucky enough to have some periods of pain relief in a day and can speak and eat, I am thrilled and so happy that it's as if I never had the pain...then wham! it's here, and I sink deeper. I am trapped, I no longer work because of this ( my dream to be a teacher and was for a few years completely destroyed). I was always strong...while on my own with my 2 children (one disabled) I managed and quite well...difficult and stressful but I did it and happy. I have tried to talk to doctors who are now unable to help me, as they admit, and no longer contact me except for necessary follow-ups for continuation of current meds that help sometimes for short periods of times (an hour to a few hours at most)...better than none at all I guess. I am alone all day long. My 17yo son comes home from school around 3pm which is the most joyful to me. Guess what though, I often can't speak because of pain and this is all he has to come home to. My boyfriend calls every evening as we have in the past 18+ months...I see him on weekends and often once a week. As he states "I never know what to expect" day by day or when I visit...of course frustrating for him. He understands my pain, his 2 brothers have it though one brother was severe like me and had MVD surgery recently that is working. My situation is diferent and not able to have that surgery done, but other brain surgery. All in all I don't know how to get through an hour let alone a day or night, sleeping or awake. yes everyone is wonderful and I don't know how much worse off I would be if it wasn't for all of you. I am simply in the giving up mode but exactly does that mean?...what do I do when I 'give up'? That's even worse, I don't know. I would never hurt myself, I don't believe of doing such things spiritually speaking, I love the things in life, my son is my 'gold' and would never ever even leaving him. I don't know how to give up but I want to.

" I dont know how to give up but I want to"
That sentence resonated with me…I’m lost, I don’t know what to do, even if there was something, do I have the strength?
I’m not suicidal either…just lost…
The pain, the high dose meds, the pain again and all the medical & emotional side effects …(( prudence))

Kismet, I’m sorry I’m not offering anything positive…I feel terrible unloading on your thread…(( hugs ))

Kismet, are you trying to adjust your meds? I wish there was a magic bullet for us. Unfortunately, what I do is probably not the most constructive but when I am in pain I hole up in my house and don't answer the phone,etc. As little stimulation as possible. I think it might help at least not aggravate the pain?

santafered said:

I too feel just like all the above. Only sometimes I'm not always sure this site does me any good. I can mention something on here and there are no replies. Then maybe that is better then negative ones. Each of you that have already replied sound just like me. It's just plain tough. Hang in there and hugs to each and every one of you on this site.

Santafered, if you ever, ever need a friend to talk to please contact me through my profile details. Just knowing someone is there for you through thick or thin is a huge help, and someone who knows first hand how debilitating TN can be. I will reply to your emails, I may not always be positive - but I will be there. Melissa xxx

OH I hear you sister!!! SO MUCH!!! Ugh ... realistically when I'm super super down and low I just BREATH and I rest. And I try and wait it out to wait it out to the point that I can at least get up and see some sunshine, and meditate, make it to a yoga class. But I know how awful it is and how deep that pain and sadness is when it's dark and so gray. When I am up — I work on finding this that bring me joy, fill up my happiness jar, give me inspiration and light. So when it does it so dark and scary ... I know that time will pass and I can tell myself the clouds will eventually lift, there will be joy. I'll find it, it's going to be a little while but it's there.

I think all we can do is breath, try and find joy on those good days and live one day at a time. Sending you much love! Jessica

I am posted along the same lines. I called my blog trying but not doing well.

I often think of you all and what your lives are with TN. I know how mine is. I know my “average” day with TN and a good or bad day. Sometimes I reminisce on the days before my TN diagnosis; before the pain, the medications and the numerous doctors.

I know this disease isn’t one size fits all even though some doctors treat it as such. I’ve tried over a dozen medications, seen two dentists, two oral surgeons, two mds, two neurologists, one pain specialist, two neurosurgeons, ER/urgent care visits and a counselor.

Like some of you my marriage has changed since diagnosis. Perhaps better in some respects, but I do feel alone in my pain. I know it’s hard to understand something you cannot even see. I also have a hard time needing anyone for anything.

I’m not sure why around 5-6 weeks ago my TN just went crazy. I’ve tried to pinpoint, but I can’t.

I know some people take on the world and let nothing stand in their way. I used to be more like that. Right now… I’m in limbo. Maybe I have recycled back to the denial part of the 5 Stages of Grief. Two weeks ago it was Anger.

I know I’m a fighter, but when you have to fight every day… What becomes of you?

I completely understand and wish we could help one another in some way. I've come to a decision basically because have little choice. All doctors are refusing any other treatment for me, stating that they did all that they could (and likely true, but one never knows). My decision is surgery to remove the meningioma and praying that not only is removing the tumor safe but hoping the ATN goes away too. This is all too much...in the words of David M. Bailey instead of 'why me' ask 'what next'.

As a coffee (java) lover, he states, 'well that's easy, go make a cup of coffee'. in other words live in the moment. That is so difficult for us when we have very few moments of relief. When I do, on VERY rare occasions, I feel like I'm alive...for that moment. 'What next' is how I live...I've come to surgery...in one week, from today, it will be over. I pray I survive and am not ...well, the worst...

luv and hope to you Mimi, though I'm not sure if that helps...nothing did for me...except spending time on my laptop reading these discussions...I say that with ABSOLUTE gratefullness! Thank you everyone. Mimi, maybe have some java :-)

here is the link to David M. Bailey, his Bio and his music...makes me cry everytime but appreciate the gift of hope.



Mimi said:

" I dont know how to give up but I want to"
That sentence resonated with me...I'm lost, I don't know what to do, even if there was something, do I have the strength?
I'm not suicidal either...just lost...
The pain, the high dose meds, the pain again and all the medical & emotional side effects .....(( prudence))

Kismet, I'm sorry I'm not offering anything positive...I feel terrible unloading on your thread...(( hugs ))

I too am in a horrible flare up. Just out of control. I am so sorry to hear of everyone else having similar struggles. I have been practicing "mindfulness." It seems really silly at first, but it is all about being in the present, and can help as a way to mentally distract away from the pain. Just a little mental trick that may or may not work for you. Here are some links to what it is and some activities:




I know what everybody means about feeling really low. I feel it is a blessing and a curse that I am single and not married. This disease is so damn isolating, but at the same time I think about my past relationship with the man I wanted to marry and there would be no way our relationship would survive this. But it still is just so dam lonely and sometimes very scary. I have my father, my family and friends who watch out for me but it is still a lot of pressure to support myself financially knowing I have to keep my head above water. I dread when people ask me how I am doing because there are never any "good" days when I am pain free, or I am not dealing with the crappy side effects of these effing meds, or not getting frustrated by a medical system that can't seem to find me timely access to the care and expertise I need. I've started riding horses, something I haven't done since I was a kid. It is my true passion and is the only thing that brings me authentic joy. It makes the pain go away. I wish I could be around horses 24/7. I even had a fall a few weeks ago and I had a minor concussion....best thing ever. Distracted me from this terrible pain.

I know focusing on the pain can make it worse. I remember once being in the ER crying so hard and the nurse said, “doesn’t crying make it worse?” Why yes… I guess it does.
But how do you ignore this pain?

It’s not like a, “oh my achy back” pain it’s more of a, “Rrrrrwwwoooaarrr BANG ZING BOOM!” pain.

I feel the same as you all… The pain is one things and then the medications used to treat dumb us down. The medications cause havoc on our bodies by potentially affecting our liver, lowering white blood cells and lowering red blood cells. Why? Because this pain is fierce. This pain is the king, the head honcho, the president.

We are warriors.
Yet as I asked …
What become of someone who is constantly in battle?
Maybe I’m allowed these days of weakness; these days of being tired.

I could not be stoic today, today I grumbled and complained. It didn’t make me feel any better. I dont know how to make it better. I have tried and tried. This lastest “attack” has lasted 3 months of constant burning, boring, deep, aching pain. TN1 started to kick back in too. I have had 4 decent days in the last 3 months. I feel like a shadow of myself and I don’t know how to make it feel better. I have tried everything. I miss my old real self. The person that greeted everyone with a smile and that was up for anything. Now I am dumb and tired on meds. I want to put my head through the wall to experience a different type of pain. I want to scream and cry but that does not help either. I do not know how to get through this pain that affects every ounce of my life and my being. I am sorry you are all in the same boat but I thank you for understanding. Thank you for just letting me vent. Thank you for allowing me to not be stoic today.

Oh, good grief today I know where you're coming from. I put my own little diatribe on here earlier today about having a different pain than usual. It sucks something chronic! ( A good old Aussie saying. Says a lot without making sense!) I have to get ready for work soon and I really don't know how to pretend I'm fine today. I'll be thinking of you, too!!