‎-sighs- Well, I guess this is what I'm stuck with until we find out what's wrong with my shunt catheter. I'm waiting for the doctor's office to call with my X-ray/CT appointment. Then I have my MRI,too. Insomnia sucks... I could drug myself to sleep, but I hate doing it. Early mornings are usually the worst. Lately, I've been feeling it when it drains. There for a while - I didn't feel it. It didn't bother me. But for the past week it's gotten pretty bad. When it drains, I hold my breath. It's sharp through my side and into my back. I get too hot, then too cold. My head starts pounding. Meh. I'm really tired. It doesn't matter how much or how little I finally sleep. I feel like my body just wants to lay down and have someone ring the bell. IIH has kicked our ass. But then - there's me - that grits my teeth and moves on to do the next thing on my mind. Tonight is really bad... and even making graphics isn't keeping my mind off my side. I don't want to wake anyone up, but I just want to cry. For 5 minutes, I just want to say that I do not want to do this anymore, without someone convincing me that I've dealt with worse. It's just one more battle. When do these battles end up with a war won? Because I feel like I'm losing.

I probably should have mentioned... two weeks ago was my Disability Appeal Hearing. I'm worried about that, on top of how I already feel.

That really stinks..I'm so sorry you're struggling right now! It does sound like you're shunt is a mess, so I hope you're keeping the doctor's informed of any changes. My shunt is currently draining too much when I'm upright, so I wonder if you've noticed a difference depending on your position. You can always go to the ER if it becomes too unbearable..sometimes things move a little faster from there.

Also, keep in mind that stress and lack of sleep can make your symptoms worse. I don't tolerate meds well so I understand your concerns, but it might really help to get a good night's sleep. Different teas, aroma therapies, meditations, and guided imagery can help too. I'm sorry to say the war isn't won until we find a cure, but you can definitely win this battle.

I know it's exhausting at times, but you are your own best advocate..the squeaky wheel gets the grease and all that, so keep calling your specialists until someone listens. I'm wondering how things are w/ your vision and if that would move things any quicker. I'm totally rambling at this point, but hopefully you'll find something useful. The important thing is to never give up!!!

I hope you find some relief soon..hang in there, and keep us posted!


Julie

medmisfit wrote:

That really stinks..I'm so sorry you're struggling right now! It does sound like you're shunt is a mess, so I hope you're keeping the doctor's informed of any changes. My shunt is currently draining too much when I'm upright, so I wonder if you've noticed a difference depending on your position. You can always go to the ER if it becomes too unbearable..sometimes things move a little faster from there.

Also, keep in mind that stress and lack of sleep can make your symptoms worse. I don't tolerate meds well so I understand your concerns, but it might really help to get a good night's sleep. Different teas, aroma therapies, meditations, and guided imagery can help too. I'm sorry to say the war isn't won until we find a cure, but you can definitely win this battle.

I know it's exhausting at times, but you are your own best advocate..the squeaky wheel gets the grease and all that, so keep calling your specialists until someone listens. I'm wondering how things are w/ your vision and if that would move things any quicker. I'm totally rambling at this point, but hopefully you'll find something useful. The important thing is to never give up!!!

I hope you find some relief soon..hang in there, and keep us posted!


Julie

It became a rather unruly night. I of course ended up vomiting everywhere. Took the Reglan after it stopped, and showered, got out of the shower and my best friend's baby fell out of bed and hurt himself. He just cut his lip [he's just under 2 years old] - and his mother takes care of me when I can't. Got him back to sleep, and took a painkiller and went to sleep - slept really late. I'm not really noticing changes in being vertical or horizontal. I think that is because either up or down, I always feel crappy. My vision, is blurry today. But I found myself dripping from my nose this morning, and my eyes were a weird sort of wetness. I don't cry typically in my sleep, or for that matter, I don't cry until I'm really in pain, and this wasn't tears. I'm wondering if it wasn't CSF. I've had some drainage down the back of my throat that semi tastes that way, but I'm not sure. You'd think after a year, that patch was sealed and it wouldn't do anything like this. However, we're putting the baby with a babysitter and I'm going to the hospital in the daylight tomorrow. Between now and then, I'm going to take something and go to sleep again. I did sleep well, and for quite a while after giving in to the painkiller. It just didn't help the pain much. So - here's to hoping.
Thanks,Julie, and anyone else for their thoughts. I hope you all are feeling well!

-hugs-

- Crissy

Crissy I'm so sorry you're having such a bad time at the moment. It's obvious your shunt needs checking out. As for your wet eyes, dripping nose and the taste in your throat, ?I wionder if it could be some viral infection, sinus problem or perhaps cold. It's not something I have come across before with IIH. I'm glad you're going to see a doctor, so please keep us updated on how you got on. I'll have my fingers crossed for you.

Heidi

I went to the doctors yesterday, or rather, Friday, in my case. -frowns- My time is off, because she gave me Toradol and Fenergen, to get me comfortable, until they could get me into the Neuro. She [my PCP], is calling them to get me in ASAP. I went to lay on my back on the table, and screamed and came back up. My nurse was picking on me [they all know I use humor to handle my worst moments]. She held up the needles, because she had to give them in my arm, they refused to try anything with my hips/back area. Said " Come on, Crissy. You've seen BIGGER needles, and had bigger stuff happen to you. Now you're scared?" It hurt to get them in the arm, but she was right 'You won't feel anything in a couple minutes". My roomie/adopted sister, was told to take me right home, they would call to check up and give appointment status - if things got worse to call, and/or go to ER. So she took me home, got me to eat something... and I slept 24+ hours! She came in to check on me a couple times, and turn my fan on me lightly. Make sure I wasn't fevered, see if I wanted a drink or had to go to the bathroom. Other than that, she let me sleep. I feel somewhat better after the sleep. She gave me Fenergen to take at home. Then I have Vico, and Robaxin. On top of my Keppra for the Epilepsy and stuff... but I'm tired of taking all these horse sized meds! The Fenergen works better than the Reglan I was on for the nausea. She checked my eyes, and said there was no swelling she could see, which made her take a good deep breath. Since my tumor was taken out, the swelling hasn't been back. The side pain, blurry vision, back pain, and foot numbness she couldn't explain so she said she'd push the neuros to get me in.

I love that my PCP pays attention and doesn't blow off my pain. So just an update. I turn 28 on the 11th, I hope I can stay upright the entire day... that's my birthday wish. That, and I asked everyone to not buy me anything but to donate to IHRF for me, and all those I know that suffer. The only thing I really want that involves money - is to fun research to help us all recover. I think every day about the misery that it can be, and I don't like anyone else going through it.

<3 Thank you, guys, for letting me have a voice somewhere where my illness isn't 'unseen'.

I am so glad that you have a good relationship with your PCP because that is half the battle when it comes to treatment. It makes it less stressful and does make you feel more confident that they are taking their care of you seriously.

What a fantastic idea for a birthday gift, we should all take a leaf out of your book, and do the same. How unselfish and resourceful of you to do that, I will keep my fingers crossed that you will have a fantastic pain free birthday.

Heidi

Finding a physician that listens and supports you is very difficult, so I'm also glad you have found someone to advocate on your behalf. I do know that they talked about leaking spinal fluid at the IHRF conference, but they said it's VERY rare and usually something else. I'm glad your PCP is pushing for the neuro visit..hopefully they'll figure it out and get you on the right track!!



I think you have a great birthday plan and I hope all your wishes come true!!!

Take care,
Julie