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I can't take this anymore! (very long)

post #1 of 19
Thread Starter 
Ugh... I don't know what to do anymore!

I have a condition called pseudotumor cerebri, and I just feel like lying down and dying. I can't take it anymore! I can't stop crying. Today is unbearable again. I've been dealing with headaches since I was about 7 or so, and since then it's been pure hell. I had a shunt put in in like '06 or something, and since I've had 15+ revisions on it. The last two were back-to-back a little less than a month ago. They tried to take the shunt out, but instead found out that my body is shunt-dependent (which led to them putting it back in) and I will most likely have to put up with this crap for the rest of my life. I have 4 different pain medications for it. I take my oxycodone er regularly, and for the past couple months I've been having to take more and more because the pain is excrutiating. I've tried every type of headache med/treatment available, but nothing worked. All I want right now is go to the ER and have them pump me with painkillers to dull the pain a bit, but as soon as they do that they send me home. So that's no solution. I've switched doctors a couple times already, and now have more doctors than you could count.

I just can't do this anymore! I spend all day lying flat and crying. I feel hopeless and helpless. All the doctors have done everything possible. I can't take it. And if I tell my parents I want to go to the ER again, they will just make me feel guilty again about the co-pay and cost and everything. Then they'll bring up the thousands and thousands they've spent on hospital bills just this year. And I feel guilty about telling them I'm hurting all the time since they can't do anything (I do complain a lot to them). All of this has caused me to be self-harming in the past, and even though I don't feel that way right now, I just feel like laying down and dying. I can't do anything, I'm stuck between a rock and a hard place. And I really can't go into the hospital again because my parents are going on vacation up north this weekend. What can I do?! Up my pain meds for the meantime? I can already tell you this- if I call any of my docs, they will tell me to go to the ER. I've done it before.
post #2 of 19
I have dealt with chronic pain for a long time now. I was dx with an illness at a young age and it is really difficult (to say the least) to be young and dealing with chronic pain. I hear what you are saying and can understand. Please reach out for help. Are there online support groups for you? Please see a counselor or therapist. That is the single thing that has helped me get through all these years! Physically we have little control but mentally we can do alot. We do have power.

I don't know what your parents are like but most parents will want to do all they can for their children. It is difficult for them to see you in pain also and stressful to deal with bills I am sure. But they would much rather do that than not have you in their lives at all. My Mom was a single parent and did the best she could but she struggled along with me but parents struggle in a different way than us.

Can you do your own research into this? Find a way to deal with the pain? If you meds aren't working they must be able to find a way to make you comfortable. A morphine pump?

I will say it again because it is the most important thing: Get a good support system in place. Online support and someone you can talk to about your feelings so you don't feel like you are constantly burdening your family. Which than causes us to shut up our complex, all consuming feelings and hurts us more than the actual physical pain does.

PM me anytime to vent!
post #3 of 19
I'm so sorry you are suffering. It sounds dreadful and I know how exhausting it can be. BIG HUGS!

Please, never stop looking for answers and doctors who can help you. There is SOMEONE out there somewhere...unfortunately it looks like you will have to do it.

Hang in there,

Cally
post #4 of 19
Aw sweetie, I am SO sorry. My hubby experiences a chronic pain condition that results in 7 - 10 attacks in his head a day. His head is ALWAYS in pain. 24 hours a day, seven days a week, since March 2006. On a scale from 0 - 10, his average attack level is 7.2, and he has on average 7 of them a day. His average level of pain not during an attack is a 2.7. He spends, on average, 32% of every day in an attack. He can walk around with a broken foot (and has) - and this pain brings him to his knees, screaming in pain, clawing at his head.

Narcotics don't stop the pain, though they do help alleviate it. He was in a very, very, very deep depression for over a year. Chronic pain saps your energy and your life. You have to actively want to find ways to manage living with the pain. But Laura's right - physically life can be a real challenge, but mentally you DO have power! You have to actively seek support to manage it. You can harness that power, and you can find the will to beat the pain.

Here are some resources that may help:

http://www.findmemyhouse.com/ptc/ptcsn.html

http://www.angelfire.com/ok/PTCSupportNetwork/

http://www.dailystrength.org/c/Psued.../support-group

There appear to be some yahoo groups: http://health.dir.groups.yahoo.com/dir/1604762245

http://groups.yahoo.com/subscribe.cgi/ptc-support-group

I'm so sorry, sweetie. No one should have to suffer like that.





Laurie
post #5 of 19
Thread Starter 
Quote:
Originally Posted by LDG View Post
Aw sweetie, I am SO sorry. My hubby experiences a chronic pain condition that results in 7 - 10 attacks in his head a day. His head is ALWAYS in pain. 24 hours a day, seven days a week, since March 2006. On a scale from 0 - 10, his average attack level is 7.2, and he has on average 7 of them a day. His average level of pain not during an attack is a 2.7. He spends, on average, 32% of every day in an attack. He can walk around with a broken foot (and has) - and this pain brings him to his knees, screaming in pain, clawing at his head.

Narcotics don't stop the pain, though they do help alleviate it. He was in a very, very, very deep depression for over a year. Chronic pain saps your energy and your life. You have to actively want to find ways to manage living with the pain. But Laura's right - physically life can be a real challenge, but mentally you DO have power! You have to actively seek support to manage it. You can harness that power, and you can find the will to beat the pain.

Here are some resources that may help:

http://www.findmemyhouse.com/ptc/ptcsn.html

http://www.angelfire.com/ok/PTCSupportNetwork/

http://www.dailystrength.org/c/Psued.../support-group

There appear to be some yahoo groups: http://health.dir.groups.yahoo.com/dir/1604762245

http://groups.yahoo.com/subscribe.cgi/ptc-support-group

I'm so sorry, sweetie. No one should have to suffer like that.





Laurie
Thank you soooo much! I think I may join the third support group that you listed. My biggest thing right now is the constant pain. And the fact that nothing will take it away, it sucks. I hate the amount of narcotics I have to take right now to keep me functioning. That's the part that really worries me- I don't want to end up taking these narcotics for the rest of my life. It's bad enough that I'm already dependent on one of them. Sorry to hear that about your husband, I know how he feels. When my pressure in my head is too high, I get short, sharp shooting head "pains" that are crippling. I either crouch down and shake & moan, and/or pass out.

I called my doctors' office, and they said that my neurosurgeon was out of the office (but on call) and my neurologist is on vacation and so is her coordinator. So I'm basically screwed for the weekend. They just said that if it's so bad, to go to the emergency room. And I told my parents this, and they yelled at me for not calling them sooner. Since this always seems to fall apart near a weekend or holiday, they think that I'm trying to sabotage their plans and ruin holidays and such, which I'm not. But I don't blame them, it is kinda odd that this always happens like this. And everytime I try to tell my parents I want a different neurosurgeon again, they tell me no way ever, there's nothing wrong with this one. It seems like I just can't win

I'm sorry I sound so depressing to everyone, I must seem like an uber weirdo.
post #6 of 19
Pain is awful, and like Lauries husband Gary i can only imagine what it's like
post #7 of 19
Quote:
Originally Posted by Rosiemac View Post
Pain is awful, and like Lauries husband Gary i can only imagine what it's like
...
Don´t give up......

....
post #8 of 19
Just adding a loving hug.
post #9 of 19


I hope you can find some more support in handling this - you sound like a very strong person, not an 'uber-weirdo'! Prayers for you and your family.
post #10 of 19
Thread Starter 
Quote:
Originally Posted by darlili View Post


I hope you can find some more support in handling this - you sound like a very strong person, not an 'uber-weirdo'! Prayers for you and your family.
haha, you've never actually met me, have you? I am a weirdo in real life lol yup yup! Just give it time, you'll see what a strange person I am . When I'm not down like this, I think I'm very strong. This is just a sucky time for me

And thank you everyone for your kindness . Thanks for putting up with me!
post #11 of 19
It sure doesn't feel to me - and probably all of us - that we're "putting up" with you.

I can't tell you how many times Gary has told me he's sorry for ruining our lives. I've never felt that way for one moment. But guilt goes hand-in-hand with chronic pain. Those who love you, and those of us getting to know you, don't feel the same way about it you do. We just see someone suffering, and wish we could do more. Or anything! to help.



Laurie
post #12 of 19
Quote:
Originally Posted by mismaris777 View Post
haha, you've never actually met me, have you? I am a weirdo in real life lol yup yup! Just give it time, you'll see what a strange person I am . When I'm not down like this, I think I'm very strong. This is just a sucky time for me

And thank you everyone for your kindness . Thanks for putting up with me!
LOL, sorry hun, I have to laugh because you sound like me. I'm a weirdo with chronic pain, not controlled because my doc is a moron.

Laurie has given you some excellent advice, and links.

I think you'd be suprised to know that you are NOT alone in this.... there are many other people on this board that deal with varying levels of chronic pain.

If there's anything, anything at all we can do, please pm or post. There is tons of support.

Quote:
Get a good support system in place. Online support and someone you can talk to about your feelings so you don't feel like you are constantly burdening your family. Which than causes us to shut up our complex, all consuming feelings and hurts us more than the actual physical pain does
Quote:
Please, never stop looking for answers and doctors who can help you. There is SOMEONE out there somewhere...unfortunately it looks like you will have to do it
Quote:
physically life can be a real challenge, but mentally you DO have power! You have to actively seek support to manage it. You can harness that power, and you can find the will to beat the pain
I'll echo all of the above.... I'm in my own fight to find help, and you do have to stand up for yourself, advocate for yourself, and have support. Please keep posting, check out the support links, and pm any who have offered.

huge
post #13 of 19
I can only echo what everyone else has told you so far. Don't ever think you have to be alone in this there are many people and groups that will listen, support and hopefully help you through.
Sometimes the first step in reaching out to them, is the hardest. But in the end it is well worth it.
Hang in there and don't lose hope the answer may only be a small bit of information away....
post #14 of 19
I can't imagine what life would be like if I had to live with narcotics and neurosurgeons. The tension headaches I deal with feel like a mountain sometimes, but the things that you and others like you must live through are just horrible. Many to you. I think joining some online support groups could really help you, as well as seeking out a counselor or therapist in your area.

Much luck.
post #15 of 19
I don't know much about your disease...but I do understand shunts and how they work. I'm assuming the shunt was put in place to relieve fluid off your brain? Cerbral spinal fluid? If the fluid is causing the pain and if the shunt is working properly and removing the excess fluid, then there shouldn't be any more pain should there? What I'm trying to say is that maybe you have something else going on too or have been misdiagnosed? Even the best of doctors make mistakes sometimes.
post #16 of 19
I can't even imagine the pain you experience . I hope you find some support and comfort here. Whenever you need to share, we are here.......
post #17 of 19
((((((((HUGS))))))))

I'm really sorry you are going through this! I hope you start to feel better soon!!
post #18 of 19
I can't even begin to imagine what you must be going through. I truly hope you can find some supportand comfort and that things get better soon. Plenty of and a big for you.
post #19 of 19

Don`t be so hard on yourself!

You know I think it`s kinda bad that your parents make you feel guilty. They aren`t the ones suffering chronic pain so don`t suffer in silence just to please them. It`s not your fault you have this condition.

I hope you get some relief soon
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