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Jul 21, 2009 - 5 comments
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Well, no answers really to our questions. Currently plan appears to be to wean her off all the high end pain relief.
On one hand, I agree - she was in cold sweats last night, possibly withdrawal symptoms from the pain meds, but on the other hand, now she's in much more acute pain than before (if that were possible)
I still feel that they have missed something as other people I have spoken to online that have had a shunt put in, were up and about in a few days - no one appears to have gone on with such severe pain.
The consultant is trying an antimigraine drug (known in the US as migranal), but what she is experiencing isn't really a migraine or a headache as such - its fluid pressure so I don't think this drug will address her problems.
Still, we have to be seen to be cooperating - all the while, my wife is slowly losing her drive and will to keep trying. Depression is a real concern now as weeks of intense pain are taking their toll on her.
It sounds like they want to do an LP to remeasure the pressure. My concern with this is that it'll only show a glimpse of her pressure while she is at rest - not while she is standing or upright when the pain is much more intense (and therefore the pressure also)
On one hand, I agree - she was in cold sweats last night, possibly withdrawal symptoms from the pain meds, but on the other hand, now she's in much more acute pain than before (if that were possible)
I still feel that they have missed something as other people I have spoken to online that have had a shunt put in, were up and about in a few days - no one appears to have gone on with such severe pain.
The consultant is trying an antimigraine drug (known in the US as migranal), but what she is experiencing isn't really a migraine or a headache as such - its fluid pressure so I don't think this drug will address her problems.
Still, we have to be seen to be cooperating - all the while, my wife is slowly losing her drive and will to keep trying. Depression is a real concern now as weeks of intense pain are taking their toll on her.
It sounds like they want to do an LP to remeasure the pressure. My concern with this is that it'll only show a glimpse of her pressure while she is at rest - not while she is standing or upright when the pain is much more intense (and therefore the pressure also)
Hello, I also have PTC I understand the frustrations with no answers it just doesn't add up to me. Wish I could be more of a encouragement. I remember when I had my LP I was confined to my bed for a week if I stood up I got intense headaches. They said they took the extra fluid out to help me out and I felt great as long as I stayed in bed and laid flat and I did not enjoy being bed ridden.
Hey, thanks for that. Hopefully you are through the worst of it now and things are coming right (or have come right?)
This is a really horrible condition/problem and I really feel for anyone who has it - not only coping with the problem itself, but also gaining the understanding and empathy of the doctor and nursing staff that look after you while they treat you. They can make the experience more or less bearable depending on their treatment of you.
This is a really horrible condition/problem and I really feel for anyone who has it - not only coping with the problem itself, but also gaining the understanding and empathy of the doctor and nursing staff that look after you while they treat you. They can make the experience more or less bearable depending on their treatment of you.
You know I started on med help because of my condition I stumbled across some stories while I was on line. I was diagnosed 2 years ago while living in VA. I loved my opthamologist but did not care for my neurologist. I am now in Indiana and my goal is to find a doctor that is understanding. It is so hard to describe how I feel from day to day. I have often wondered if I had a tumor and they just missed it in the MRI. I am now seeing that there are a lot of people worse of than I. I take a high dosage water pill twice a day and see doctors every six months. I used to have to see them every month. The fluid has always been worse out of my right out I used to loose my vision for short amount of time out of my right. Now the eye doctor says it is almost gone out of my left and my right is better no more lose of vision but still lots of fluid and sometimes discomfort related to the right side. I agree with you a migraine is different than a fluid pressure headache. I pray that your wife gets relief soon and thank you keyman for being a supportive husband. If you happen to live in VA I know a wonderful eye doctor.
Hi ima2j ,
Alas, we're pretty far away from VA :) Almost the other side of the planet.
One small blessing at the moment, is my wifes left eye has started to improve and she can now see more clearly again, which is a huge relief to us both - especially when not much else is going right for us.
Another angle I'm hoping to take on with the doctors, though maybe after this current crisis point is over, is investigating a possible cause to PTC.
As I understand it, its overproduction of CS fluid. What causes this? I'm wondering if its related to the pituitary gland and hormone production. The hormones trigger the overproduction maybe?
My wife also has had other health related issues over the last couple of years (endometriosis, ovarian cysts, bad skin, semi-regular migraines) and during one particularly bad patch with some other problems, an MRI reveal an issue with her pituitary gland. At the time her prolactin levels were extremely high and really weird things were happening to her. Subsequent tests showed thing has normalised, so further investigation on that area ceased.
I'm wondering if its all somehow connected, but need to talk it over with an endocrinologist to see if there is any chance I'm right, and if anything could be done to either fix or tone down the effects.
I've not been able to find much info online about this, but its hard as so much of it is in pay only med journals or written in language that you need to be a doctor to fully comprehend.
Alas, we're pretty far away from VA :) Almost the other side of the planet.
One small blessing at the moment, is my wifes left eye has started to improve and she can now see more clearly again, which is a huge relief to us both - especially when not much else is going right for us.
Another angle I'm hoping to take on with the doctors, though maybe after this current crisis point is over, is investigating a possible cause to PTC.
As I understand it, its overproduction of CS fluid. What causes this? I'm wondering if its related to the pituitary gland and hormone production. The hormones trigger the overproduction maybe?
My wife also has had other health related issues over the last couple of years (endometriosis, ovarian cysts, bad skin, semi-regular migraines) and during one particularly bad patch with some other problems, an MRI reveal an issue with her pituitary gland. At the time her prolactin levels were extremely high and really weird things were happening to her. Subsequent tests showed thing has normalised, so further investigation on that area ceased.
I'm wondering if its all somehow connected, but need to talk it over with an endocrinologist to see if there is any chance I'm right, and if anything could be done to either fix or tone down the effects.
I've not been able to find much info online about this, but its hard as so much of it is in pay only med journals or written in language that you need to be a doctor to fully comprehend.
Hello keyman,
Well I would be interested in what you find out. I have been told by my doctors they don't know what causes it (I'm having a hard time getting medical insurance due to that) however if I loose weight they are 99% sure that I would be cured. I'm slowly loosing weight but by no means am I to stop taking the fluid pills. That kinda makes me wonder. I'm so glad your wife has had a step forward. I hope her spirit is up as well. My prayers are with her.
Well I would be interested in what you find out. I have been told by my doctors they don't know what causes it (I'm having a hard time getting medical insurance due to that) however if I loose weight they are 99% sure that I would be cured. I'm slowly loosing weight but by no means am I to stop taking the fluid pills. That kinda makes me wonder. I'm so glad your wife has had a step forward. I hope her spirit is up as well. My prayers are with her.
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