I have been through a lot in the past year and a half. My pain started October 2011. Since then I have had two mvd’s, one failed. Gamma knife attempt that ended in a 14 minute long seizure, and then 5 weeks ago they put me under and did the gamma knife. So far I’ve seen no improvement. Yesterday I was denied by disability because they didn’t see any reason why I can’t work. I’m taking 3600 mg of neurontin, 1200 mg of tegregol, usually 3mg of Xanax a day. I just stopped taking dilaudid on a daily basis 5 days ago, and I continue to have stabbing pains through my ear, lightning bolts through my face, sewing needles shot into my eye, and my left side of my face turning red and being set on fire randomly. I would like to see someone from the disability office work like this. My neurologist says I can’t drive on all this medication. Who would even hire me!!! I’m hitting a wall emotionally. They said if my gamma didn’t work this time they would zap me again. Because of my seizure th first time this means I have to go through being put under and having a tube down my throat for the fourth time in a year. I have never reacted to anesthesia well to begin with. It took me 6 months to recover from having my wisdom teeth pulled. It took me months to recover from sinus surgery when I was 21 because my body haes anesthesia. I’ve tried to stay so positive, but I’m feeling sad, lonely, angry, frustrated… And more. I’m stuck in a 12 x 12 room 5 days a week. At least I have my dogs, but this is no life.
You will probably need legal representation for the disability. From what I have read, it takes a few tries before you may be granted. I guess they must think if they say no you will go away. Keep trying. Its sort of like an insuance company that does not want to pay a claim, even though, they know they should. Its worth a shot to say no at first. If you appeal, it may just work.
Oh honey, I know how you feel, I have been home now for 14 months, I had a successful MVD, but I have an autoimmune disorder that I am waiting for insurance to approve treatment..it sucks waiting and it sucks being in pain.
I live alone and I have said many times if it wasnt for my dogs I wouldnt be here.....but I am here, and so are you!!!
Dont give up!!! , just because today is awful doesnt mean there isnt something good!! I find the interaction with my dogs always cheers me up. I also try to do one accomplishment a day...such as hang a picture frame that I have wanted to do for months, that way at least I feel like I did something.
I know how hard the being home is, there are days that I truly feel I am losing my mind!! Just remember , you are not alone...there are tons of people on here, and I am glad you reached out. I am sure there will be a lot more responses coming to your post.
Fight the insurance, I would bet they just denied it the first time to see if you would go away! Dont give up!!
Keep us posted!! and I am sending good juju and wishing the best for you
Wendy/crashgirl
I'm very new here and it's hurts my heart to read this. I fear of saying the wrong thing but It is so good you reached out. Tomorrow or the next day must be better. Don't give up. I also send good juju your way.
{{{ heather }}}
You are an incredibly strong woman who has had to endure so much in such a short period of time… I’m so sorry to read about your dissapointment with recent Gamma knife : (
Is there still hope you could see positive results with time?
You have been incredibly positive, BUT you have to allow yourself to be angry, sad, frustrated, and realize its ok, cry, scream, whatever…you need too , it will help you clear your head and give you renewed focus for another day.
As for the disability thing, I have read it usually takes more than one attempt to get accepted.
Really frustrates me to read things like this," we" have enough to deal with living in pain, meds, doctors and then to have to jump through hoops to get disability not once but several times…
As Wendi said, Don’t give up!
Thinking of you, sending you huge (((( hugs )))) and hoping that tomorrow is brighter …
Mimi xx
You have defiantly had a strong couple of years. I also wish you waves of calmness and clarity.
I wondered where you went! To hell and back again… Do you have the Striking Back book… Things in there not tried… Pain management dr.?..that is high doses for driving. Geez! Come back… We are here for you.
Yeah I took a little time away. I was on dilaudid 8mg once a day but insisted they take me off. I’d been on it about three months and I know it can begin to turn off receptors in the brain and is really intended for short term use. Plus I wanted to be able to feel I’d the gamma was working.
Called the neurosurgeons office today and they said with such a bad case of tn I should realistically be looking at three months before I really start to see improvement and then it will be gradual. I’m not going to wake up one day pain free. I go back August 19th for re-evaluation. If I’m not seeing anything improve by then we will talk about zapping me again.
I sold my home and moved in with my parents, who 90% of the time are saints. We are building a new house that has a whole 2nd master suite for me. Like I said, saints. They both work so hard though, and they are nearing the years that they should be thinking about retirement, not feeling helpless that their adult daughter is writhing in pain in the next room.
I moved from Austin to the Houston area just about a year before this hit, so almost all of my friends live 3+ hours away and have their own busy lives. I’ve gained 50 lbs from all of the medications and lack of activity so I’m not sure. Want hem to see me anyway. I have stretch marks from the weight packing on so quickly. It all just sucks. I feel like I’ve just been dealt the shittiest hand ever. Other people have their mvd and its line a miracle. I felt that way after my first mvd for awhile and then it all hit me like a ton of bricks again. Then to wake up from my second mvd in more pain than before was so disappointing. Ugghhhh I’m just rambling now.
I feel like I’m always just on the edge of losing it and bursting into tears, but I don’t like to cry in front of anyone. I don’t like to put my issues onto other people. They all have their own stuff to deal with. I’ve always been so independent and now that’s all gone. Who knows, maybe it’s for good. I see pictures of myself thin an tan an smiling and it seems like someone else’s life. I can’t smile like that anymore without pain. I haven’t had a pain free day in I don’t even know how long. At least five weeks. Not one. My dogs are great listeners, but they don’t have much advice to give.
And something I don’t hear many people talking about is relationships, or the lack thereof because of this condition. I was single when this hit me, and now I am pretty sure that is ho I am going to stay. Who wants to deal with an overweight woman who is constantly having some kind of surgery on her head an is an emotional wreck? Nobody. That’s who. So now I’m sad, scared, lonely, frustrated, angry, confused… And blabbing on and on to this website not even knowing if I make sense. I have to admit that sometimes I am jealous of some of you who are married or have a significant other who can give you that kind of comfort. I sometimes wish I had that. I get very few hugs and they are almost all from my parents. It’s just not the same.
I think I will end this rambling on before it goes too much farther. I really do appreciate the support from each and every one of you. This website has helped me so much in the past. Sometimes I just need to get my thoughts out to others who may or may not be going through the same things, but for sure understand the pain and that the physical pain are not the only thing we endure (they certainly suck though).
I’ve probably said too much.
Hi Heather
I haven’t been on here for a while because (as you know, but I’m saying it here now) I’ve been helping my daughter and her husband who have just had their first baby, and my first grandchild, but you have been in my thoughts all the time. As KC said, you have been to hell and back and back to hell again and it sounds like you are back there now again.
A 12 x 12’ room is a very small space to be camped out in with two dogs and desperate pain.
Do you have a pain clinic nearby that has a program for chronic pain? Sounds to me that you need to be with people who understand and can offer some kind of direct help. This site is marvellous but we also need contact with real bodies with kind words.
For those of us who live alone or don’t have partners, it is so tough. Sometimes it seems everything collapses and there is no one in that little room to reach for. Night is the worst.
I take 3600 gabapentin too but not the tegretol on top of that. Also nortriptyline for burning pain. And I take sleeping meds and recently added flexeril at night so I get good sleep. For a very long time I felt like a zombie but about three and a half weeks ago my mind started to clear. Although I am slow I don’t feel so stupid, so what I’m trying to say is that at some point your head might clear a bit too. It’s a kind of miracle, didn’t think it was going to happen but it did. So I’m wishing the same for you. I think you need to know that it is really and truly possible to get better. Not all the way better perhaps, but better enough. Maybe you will get better.
It really sucks about the disability. I don’t know the ins and outs of your system but I agree with what everyone else says, you need to apply again, and perhaps again. I am in the same boat. I got denied on a technicality but I am going to gather strength and apply again anyway.
I wish I could reach across the continent and take your hand and give you a hug. Sending you the good sweet newborn baby energy I’ve been so blessed to receive this past week. It is a true analgesic.
Wishing you peace and happiness
Bellalarke
I do have the striking back book and another book on trigeminal neuralgia but because of the high doses of medications I find it difficult to read (another reason I’ve been gone). My parents got me an iPad mini for my birthday to help me some so hopefully I will be around a bit more. Certainly it will help me wait until that three month mark to see if I’m having any improvement.
Kc Dancer Kc said:
I wondered where you went! To hell and back again.... Do you have the Striking Back book..... Things in there not tried..... Pain management dr.?....that is high doses for driving. Geez! Come back.... We are here for you.
I hear you on the lack of partner issue. Sometimes this feels like the blackest hole of TN. I have daughters and friends who hug me but I agree it’s not the same. The part of me that longs for intimacy has not buckled under the weight of the pain. This longing is big. I don’t see any white knights in my future either. These are my night time thoughts. But some mornings I feel I still have a lot to offer. Who knows…? Who knows what is around the corner.
HCal said:
Yeah I took a little time away. I was on dilaudid 8mg once a day but insisted they take me off. I’d been on it about three months and I know it can begin to turn off receptors in the brain and is really intended for short term use. Plus I wanted to be able to feel I’d the gamma was working.
Called the neurosurgeons office today and they said with such a bad case of tn I should realistically be looking at three months before I really start to see improvement and then it will be gradual. I’m not going to wake up one day pain free. I go back August 19th for re-evaluation. If I’m not seeing anything improve by then we will talk about zapping me again.
I sold my home and moved in with my parents, who 90% of the time are saints. We are building a new house that has a whole 2nd master suite for me. Like I said, saints. They both work so hard though, and they are nearing the years that they should be thinking about retirement, not feeling helpless that their adult daughter is writhing in pain in the next room.
I moved from Austin to the Houston area just about a year before this hit, so almost all of my friends live 3+ hours away and have their own busy lives. I’ve gained 50 lbs from all of the medications and lack of activity so I’m not sure. Want hem to see me anyway. I have stretch marks from the weight packing on so quickly. It all just sucks. I feel like I’ve just been dealt the shittiest hand ever. Other people have their mvd and its line a miracle. I felt that way after my first mvd for awhile and then it all hit me like a ton of bricks again. Then to wake up from my second mvd in more pain than before was so disappointing. Ugghhhh I’m just rambling now.
I feel like I’m always just on the edge of losing it and bursting into tears, but I don’t like to cry in front of anyone. I don’t like to put my issues onto other people. They all have their own stuff to deal with. I’ve always been so independent and now that’s all gone. Who knows, maybe it’s for good. I see pictures of myself thin an tan an smiling and it seems like someone else’s life. I can’t smile like that anymore without pain. I haven’t had a pain free day in I don’t even know how long. At least five weeks. Not one. My dogs are great listeners, but they don’t have much advice to give.
And something I don’t hear many people talking about is relationships, or the lack thereof because of this condition. I was single when this hit me, and now I am pretty sure that is ho I am going to stay. Who wants to deal with an overweight woman who is constantly having some kind of surgery on her head an is an emotional wreck? Nobody. That’s who. So now I’m sad, scared, lonely, frustrated, angry, confused… And blabbing on and on to this website not even knowing if I make sense. I have to admit that sometimes I am jealous of some of you who are married or have a significant other who can give you that kind of comfort. I sometimes wish I had that. I get very few hugs and they are almost all from my parents. It’s just not the same.
I think I will end this rambling on before it goes too much farther. I really do appreciate the support from each and every one of you. This website has helped me so much in the past. Sometimes I just need to get my thoughts out to others who may or may not be going through the same things, but for sure understand the pain and that the physical pain are not the only thing we endure (they certainly suck though).
I’ve probably said too much.
What helped me with the Striking Back Book -- was to use a Higlighter Pen
and that way I could reference the things I wanted to try.
That's one thing I CANNOT do with my IPAD. Probably could - I'm sure there is an APP for that!
Disability is always a waiting game and always turn down first time. Documentation from professionals is so important.
Even though I have a husband - he didn't sign up for this part -- dating for years didn't end up the same as living with a chronic pain patient as a newlywed. TN came as soon as engagement got rolling and plans to cohabitate were in the works.
He VERY much resented the inability to bring my brain back from the meds..... that's hard - and he was tortured by an evil woman for 20 years who used hugs etc. against him as a wife.....I cannot believe I ended up marrying a great person with no desire for hugging - almost a cruel joke.
So now that's been hard - My kids don't hug me at 19 and 24 - they used to be attached at the hip! My dogs are my only touching salvation - because they DO produce Oxytocin in your brain which is very healthy.
So now TN has crept back - and I don't know what "forever" holds and at this age - its okay. He was supportive during and after MVD - but now in shock again that I'm getting shocked again.
When you feel better - maybe you could make new friends online - there are soooo many groups for soooo many interests! Some meet in person like yahoo groups - some just online for shared interests.
Getting on pain boards only is okay for now -- but you will have to find baby steps to get back into other parts of the world a you are able!
Sorry, hope any of my babbling was helpful. OH - also a new thing is cyber counseling - people in my profession are doing private practice via-computer. With chronic pain patients - its a great idea. Just a thought.
Hey Heather, wondering how you’re doing today.
B
Hcal, you have to handle one thing at a time. One day at a time and when you are overwhelmed one hour at a time. Don’t let “them” do another gamma kniFe on you unless that’s what you want-- ok I will just stick my nose in here but if all that happened with the first two treatments and the side effects being what they are where do they get off telling you they are going to “zap” you again as you wrote? It is your body not theirs. You also need to let your parents be your parents and love you during this time, they probably feel helpless when there is so little they can do when you are hurting so much. It probably helps them to be able to do something tangible when they know you are struggling so badly. Take care, I understand and share your pain and frustration. Better days are coming.