MM3 I am so sorry to hear that I will definitely be praying for you that all goes well.

MM3, I really hope things will go better for you this time and you get the help you need. Just know you've been a blessing to so many people on here with your posts.. I will keep you in my prayers..

You are a wonderful woman! Take care of you. I hope there is relief for you in the quick future! Hang in there. I understand the not being online. We will be here whenever you get a chance to peek in.

khrystine. dont be daft. You cant cut the ties with us. We need you and you need us.
You need a place to safely vent if nothing else.
Also , your advise really does count and your experience.
It sounds like you are backing off , little by little , from the real world.
This is a dangerous thing to do. I know you, I know you need to talk out loud, like me. Dont let this black cloud cover you up. Fight it Krys!
And yes, I do understand, better than most, how very difficult it all is. Most especially when we both thought the shunt was the answer.But you have to find a reason to get up every day. Not because you have to, because you want to.

Who is to say the trip has to go badly? Make your mind up to make it work. Take a picnic lunch, enjoy the changing colors of the season. Or, look at it like I do, no housework day!
You have to dig deep, yes, again, and try to make it a positive day. Hard work most of the time but its easy habit to pick up.
I for one, already miss your posts. Filled with good advise and support.
Try and make each day a new one.Make each day count.
Let us help you .And we cant do that if you disappear for while.Please Khry, hang on in there! Cath.

You are such an asset to us. I was diagnosed only in August and you haven't been on much but in my desperate attempt to learn what the hell was going on with myself I found this board and some of your old posts, encouraging others to keep going, keep searching, keep pushing. Because of one of your posts I changed from my first NO (whom I'm sure would have let me go blind by now) and demanded someone listen and found a great care team.

I printed YOUR posts and took them to my doctors when they were stumped and you know what? They read them, they listened, they tried something else - you know what else? YOU got through to them. You cannot give up. I know you hurt and you are tired but please know there are people all over the place that you have never even met, that you never even knew you touched, that are praying for you and your doctors. (I'm one of them) and thank you for all you've done for me, I don't know how I would have done it without you!

mm3

The more I think I understand this disease the less I understand this damn disease. Of course we've learned technical terms, etc.. but really the only understanding we get from whats going on is from each other. I know, I haven't exactly been around either, but.. to be honest I was doing somewhat better and didn't feel I could add much in way of helping anyone. You don't feel right about spreading your positive experience when so many are suffering. Especially if you have no idea why you are feeling better. I may be wrong for feeling this way, but I truly do feel I had nothing to add. (now- I'm sick again)
You, however, have been through good times, mild, moderate and severe. You have knowledge I do not possess. Like I was saying the only real knowledge we have is personal experience or the experience of our friends here. Many times I've felt ill and remembered reading that exact symptom here, so instead of being overwhelmed with anxiety, I was able to tell myself it was normal for IIH. That is huge in way of helping another human being suffering, ya know? Much of the time that is the only way we can help.

I don't know if I could fight the way you have. You're a very strong women. I pray this illness doesn't steal your fight. I pray you recover. I am not going to ask you to force yourself to sign in and post as you've explained it's for medical reasons. I do think it would be helpful for you to sign in ever so often and share what you're feeling. It's so hard to battle something this big with no outlet.

You've helped me a great deal sharing your experience. Although I still do not understand what's happening to our bodies I am able to stay calm when something extremely abnormal arises.

I wish I could offer some help to you. I can pray for you. I will pray for you. I hope your visit to Ohio proves you wrong. I hope they shock you with some new discovery that leads to your getting well.

Bless you and your family.
here's hoping for some surprises next week.
Betty

Stay strong and I will keep good thoughts for you. In the mean time how are you dealing with all of this pain? Have you been to a pain management doctor yet? If not I recommend it. It may not help the PTC but it does help with dealing with some of the pain and more importantly for me it helps deal with the anxiety I have about the tremendous amount pain I might be in when a HA starts to come on.

MM3,

Tell McGregor you want proof that the shunt is working. That can not be done by just feeing the resevoir. Both times mine was blocked my NS pushed on the resevoir and said it is pumping/working fine but it really wasn't as the nuclear study showed it was blocked. As a mater of fact this time around my NS actually didn't even do the tap before ordering the nuclear study because he said "TJ you have been dead on so far and seem to know when your shunt is working or not so let's just go straight to the nuclear test". And sure enough the nuclear test showed "distal malfunction". Gotta love medical jargon.....

A simple CT or xray also is not proof that it is working properly. A shunt tap can give indication of proper function but my NS still won't even use that as proof positive for shunt functionality. I did have one time where the shunt tap said there was a problem but the nuclear study showed it was working.

If you have not had a proper shunt test to determine if your shunt is working properly then I suggest you demand one. At least you will know for sure one way or the other. If it is not working, it explains why you are feeling bad. If it is working then unfortunately you will know that a shunt is not an answer to your IIH.

Please don't give up. That is not the Khrys that we all know and enjoy here at DS.

TJ

I'm sorry you are feeling so bad. You were the first face I saw when I found this site. You have kept many going. As a "helper" person I sometimes feel "What about me? Where is my f 'n help! The two things that have made a difference for me lately-1. I was in- hospital to see if the Dr. could somehow help me with pain. I was called in to talk to their psych on staff (woman)as per their regular treatment and the woman said "Emily, you need to show your pain to the team of doctors, not just breeze in with a smile and be so polite!" (of couse I could do it for 5 min.) Boy, was I pissed! Who did this woman think she was?! Then I admitted to my self that I has become so good at hiding the horrendous pain and the destruction it was doing to me my family and my work life. Well, the next day at rounds I was a different person and really showed the team what was really going on. 2) thng that happened-- told my psych at home what was really going on in my life and and that I was not going to survive the pain--pain sucks your inside out until you become a husk of what you where. He HEARD me , he e-mail my primary(must have really laided it on) and I am now trying out the fentanyl patch. This is the first time that I have have had hope in months, because some one listened!

Can you list for your self the things that have to change. Pick the absolutely the worst grab a hold of it with both hands and teeth and go after that Doctor for the help you need. Don't let yourself slip away--you have way too much to offer. Emily
"

oh hun, im so sorry, they are telling me the same thing right now, your shunt is working fine we have treated your "condition" so it has to be somthing else causing your daily headaches and virtigo. but hey look at it this way your intense headache have improved by about %60. all i do is say ok and cry. what more arguing can i do. ive already lost my job and have subcumbed (sp?) to the life of disability ( without pay untill it kicks in) i understand your desperation. i to feel there is no reson to search for help when no one is willing or knolegable enough. but yet i still do what they ask of me, i play their game, i am going to see the neuro ENT to see if there is somthing wrong with my ears causing the virtigo. and i do my best to come on hear and talk to friends like you. i know a lot of the time im not very supportive, very negative, and have no advise, but i send hugs, and loves, and wishes that our lives will one day be wonderfull again and that we will all find our way. i too am to tired to get on here much, i just do my best and hope that no one is worrying about me while im gone. take it one day at a time and know taht we are here for you whenever you have the strenght and even when you dont.
MM3 you have been a light for me, you and your beautiful family have shown me that i can make it b/c there are others out there that have kids and husbands and lives and still find a way to survive. i hope this finds you well and pain free.
ky

Your support means SOOO much to me. It warms my heart more than you know, to know that I've helped so many of you. JANNB....Your response in particular makes me feel amazing. I'm so glad that I could make a difference in your life. You are all right....I do have to fight. It is not like me to just give up and say..."Okay, doc...your right. I guess I'm not really feeling that bad if you say my shunt is working!" And, in response to many of you...I'm sorry if my post made you think that I was giving up all together. I'm not. I refuse. I was just trying to convey to you all what it is that I'm going through and why I'm not on here as much as I once was. That is not to say that I won't be on at all. I am here for you...I am here for me....I am committed to both and I'm not going away.

TJ....You are absolutely right about everything you said and I am going to print off your response to take to Dr. McGregor. The last time I was there I demanded that a nuclear study or shunt tap be done...but, they said these things have to be scheduled and as I was scheduled to leave town that weekend they couldn't do these tests. They said that they felt the reservoir and did an x-ray and everything looks fine. That's what they always say. I agree with you that this isn't sufficient enough anymore. Clearly I'm not well and this isn't how a working shunt should be. I wish I had 60% improvement....unfortunately it's only been about 10%....at least as of late.

Cath....you've made me cry. Because....I know that you know all too well exactly what I'm going through. But...you are absolutely right. I can read between the lines...and essentially we can either live with IIH and give up on life as we know it....or use our disease to help others and live our lives everyday appreciating our ability, however small, to enjoy it. You are absolutely right...and this is why I get out of bed, shower, and come downstairs for at least a few hours each day to spend time with my family. I get up for them. BUT...it is true that as of late...I'm in bed a lot. It's the only place I can get comfortable. Uggghhh....

You are all really special people and believe me when I say I am not abandoning you. I will be here if you need me. And, I will fight when I go to Ohio. I'll let you all know what happens.

MM3 (Khrystine)

OH...and Essamom....I am taking Dilaudid every day for pain. UNFORTUNATELY...I'm up to 6 pills a day...and I hate it. Unfortunately, my body has become so dependent on the medication over the last year that this dosage merely treats my dependence on the drug...not necessarily the pain. As such, when I'm truly in horrific pain, I actually have to double my dose. It sucks! REALLY! I asked my PCP back in January to take me off the medication and put me on something less intense, but, as I didn't have a NS here and my shunt didn't seem to be working properly...he didn't think it was best to take me off of the Dilaudid. So, I'm currently stuck. I'm hoping that they can figure all of this out soon. Controlling my pain has been one of the biggest challenges. And now, I've no doubt that the attempts to control that pain have not only failed...but, have also created additional problems. Uggghhh....

My PCP says that he hasn't gotten to the point where he has given up on me. He doesn't want to commit me to taking pain meds for the rest of my life yet. So, he says he doesn't want to put me on a patch yet. The Dilaudid is for acute pain management. He says for lifetime chronic pain he has to make sure that there is no hope for relief. Of course, you would have thought that after suffering from pain for the last year since I got my shunt that this would be enough for the doctor to understand that my pain is chronic. Instead of getting me addicted to Dilaudid. Moreover, I've begged to be referred to a pain clinic instead of doing this dance with my PCP. My care is really a mess. To say the least. Uuuugghhh!

MM3

Hey MM3,

Hope your trip to Ohio goes well this week. This is all sooooooooo frustrating for you - you know we can all relate.

Hugs and prayers, Judie

Khrystine,

Maybe by the time you see Dr. Katz, he will have the authorization to write for Octreotide. I am waiting for his certification to come through. Maybe your trip is perfect timing...

(((hugs)))- hang in there!
Meredith