I was diagnosed in August of 2005. I am one of these rare cases supposedly that
has no optic nerve involvement. Diamox
had helped me tremendously; however, when I developed kidney stones, the
neurologist insisted I come off the medication.
However, after the kidney stone was removed on the left side, while off
Diamox, I developed another 7-mm stone so I don't think this caused it. I have had one therapeutic spinal tap since
the original spinal tap--I won't be doing that again--they nicked my
nerve. I cannot take steroids because I
am allergic to them. Shunt is not an
option because the neurologist won't not do such an invasive procedure with no
optic nerve involvement. So now I'm very
poorly controlled on Lasix (which the nephrologist tells me I can only take
when things are extreme). Lack of sleep
and stress aggravate things. I alternate
between needing to lay flat to get rid of my headaches, or if I wake up with
them in the middle of the night, sometimes sitting up helps them. I'm very confused as to some of the symptoms
that I am not sure are related. For
example, memory loss, sensory overload (where if someone keeps hammering me
with questions about anything will start to raise my anxiety level because I'm
still processing what they said the first time and they might be on question
10), panic attacks, slurred speech, dizziness, substituting words or having
word-finding difficulties (like knowing the name of an object but even after a
minute I cannot remember the name of it even if it is sitting right in front of
me). I was just in the hospital because
I thought I was having vertebral stroke like symptoms. I wasn't, but I'm surprised they did not call
a psychiatric consult in because I was bonkers.
I wanted to sign myself AMA, but I did not know if the insurance would
pay for the care if I did (they did not use to), and there was no one to call
to check because it was a Sunday. So I
felt trapped and I flipped out. I have a
host of other illnesses . I have a small
brain aneurysm. I have fibromyalgia,
nephrotic syndrome (minimal change disease because of taking nonsteroidal
anti-inflammatory drugs), metabolic syndrome.
I did have polycystic ovarian disease but I am now in menopause. I have lost 70 pounds (but recently gained 20
pounds back for no particular reason; same as the weight loss). There are other health issues, too. I pet-sit so I do walk often. I have these fragile balance in my body. If anything gets out of whack, I'm a
mess. For example, the nephrologist and
urologist tell me I have to drink more water; I explain that if I drink anymore
than 48 ounces, I have problems with this.
My husband is tired of me being ill.
We've been married 20 years. I
don't blame him. I try not complaining,
but sometimes I cannot help it.

Hilda a very warm welcome to the group I am so glad you found us. It sounds like you do have the classic IIH symptoms. There can be IIH without Papilledema, and it sounds like they are reluctant to do the shunt because there is no threat to your vision. A shunt is quite an invasive procedure as well as a permanent one, which is why they only do them if your vision is in danger.
There is a risk of kidney stones with Diamox, please read Kidney Stones Health Center , so I can see why your doctor took you off it. I don't know if there is a risk with the other medications prescribed for IIH, but you could ask your doctor about them, and if they would be more suitable.
It is hard having multiple illnesses, and it does take it toll on you and the people you live with, but it isn't your fault. It is most unfortunate that you have found yourself in this position, and I am sure, like the rest of us, it is not what you pictured your life to be. However, like the rest of us, you are going day by day and doing the best you can.
If the boot was on the other foot, I'm sure your husband would want you to be supportive and understanding. Try and encourage him to talk about how he feels, if not with you then with a support group for carers, we also encourage relatives and partners to join, so they have an outlet for themselves. It is very important that he is able to talk to others in similar situations, because he would be able to get advice and support too.
The one thing that I learned from my husband that they weren't just my illnesses, they were his too, and so he attends every appointment I have, so that he can ask questions and make sure that they are listening to what I say, and making sure I get the right treatment. You need to work as a team when it comes to your health, because your husband could emphasis the impact it is having on both your lives while you are havng these issues.
I think you and your husband need to speak to your doctor about alternatives for you, in terms of treating the IIH, that will be the most effective and least likely to cause kidney stones. Ask him about whether or not you could take any of the other medications used to treat IIH.
Please keep us updated and we will do our best to help you as much as we can.

Hi Hilda and

I am so sorry to hear of all the issues that you are having. What you really need is a doctor who will oversee all of your care and fight to get you the help that you need. Maybe starting with a new neurologist would help. I have IIH and had a lp shunt installed a year ago and I do not have pap.. Any chance of getting a new team put together?
Hey, pet sitting sounds like a fun job. Kind of like getting to play with the grandkids and then sending them home with the parents.