My name is Priscilla. I am 38 yrs. old, and the mother of 3 kids with my 1st grand child on her way in August. I was diagnosed with PTC last week, and I am still going through many other tests to see if there are any other issues on top of me having PTC. I am also going through tests to see if I have neuropathy,MS,lupus or muscular dystrophy.
My eye sight is getting worse. I just sat here looking around at the pictures of my kids on my walls surrounding me, and they are all a blur now. It's very upsetting for me. My biggest fear is not being able to clearly see my Grand Daughter when she arrives this summer. My head hurts so bad. I am taking treximet for my migraines but my head is still hurting. My neurologist only put me on that and lyrica right now. He said he wanted to try those 1st. No mention of diamox to me.
If my vision gets any worse this weekend, I am going to the ER again. I can't keep doing this. I have got my computer screen now magnified up to 175%. My husband talks about how huge my screen is on my laptop as compared to his. Well it's the only way that I can see it.
I also get ringing in the ears, a pulsating sound in my ears, twitching eyes, pain behind my eyes, pain in the back of my head, numb hands, pain in my right hand, numb legs and shock sensations in my toes. I get what I believe to be vertigo, but I am having an EEG to see if they are in fact seizures and not vertigo. I am going this Monday to get a bunch of lab work, and do a glucose test where I have to fast after midnight Sunday. Tuesday I go in for a ENG/nerve study test. I then will get a call to go get a MRI and the EEG. CT scan diagnosed my PTC, and Neurologist confirmed the findings. I also have narrowing of the vessels in my brain for someone my age. Not sure if that has everything to do with the fluid build up or not. I guess I shall find out soon.
When you guys go to the ER, do they always send you home? I was sure they were going to keep me last week, but they didn't. If my eye sight gets any worse I am going to beg them to do something now and not wait. I do not want to risk perm. vision loss. My periphreal vision is already shot. I'd like to salvage what vision that I have left.
I live in Ga, just outside of Atlanta. If anyone on here is from my area, I'd LOVE to maybe meet up one day for lunch or something granted I can drive. That is frustrating as well. My family took my car keys, but I don't want to risk hitting and killing some innocent person right now with these horrible dizzy spells.

Hi Priscilla and a very big to the group. I a, surprised that you have been diagnosed but not put on Diamox, especially as you are having problems with your vision. Has he not done a lumbar puncture? If he has diagnosed you as having PTC, and your symptoms clearly seem in line with it, a lumbar puncture would have not only confirmed it for definite, but would have also lowered the raise pressure, which would have eased the the headaches and vision problems.

I live in the UK, but whenever I have gone to ER they bring in my Neurologist when it has been because of my raised pressure. I understand that they want to do all these tests, but I would have thought that at this point your vision would have been dealt with straight away.

When you go to ER, I would tell them you have been diagnosed with PTC, and ask if it is possible that they can do a lumbar puncture. Make sure they know how bad your vision is as well as all the other effects you are having. The fct you have no peripheral vision and everything is blurred, means that you SHOULDN'T leave the ER without them doing anything. At this point I would insist on the lumbar puncture.

I have permanently lost my peripheral vision and depth perception to this condition, so I know exactly how you feel and how scared and worried you are. You must insist that they DO something NOW, as obviously things are deteriorating.

Do you have a number fro your Neurologist? If you do let him know to, that things are deteriorating, and insist on him seeing you.

Please let me know how you get on, and I hope my advice has been helpful. I hope that this is dealth with soon for you, and that your Neurologist sorts out a proper treatment plan for this, as treating you with Migraine medication instead of the ones typically for PTC is obviously not working for you.

Thank you. I have been laying down most of the day, due to my headache. I couldn't get my med filled, because I need a pre authorization from my ins., so I will call Monday to let my neurologist know. If I am not feeling any better tomorrow, I am going back to the ER. Today my side has also been hurting, and I fear another kidney stone or kidney infection. I feel hot, but my temp was only 98.6 earlier. I have a history of kidney stones and infections too.
He told me lyrica is the 1st med that he tries, and if the patient does not see a change then he will put them on something else. So far he has not mentioned the LP, but I do see him again on Tuesday for the nerve test. The reflexes on my right side of my body were very poor, so I believe he wants to test me to see if there's another underlying issue 1st.
He also mentioned botox injections for the migraines, but ins. wants you to try other meds 1st so they can see that you have tried other things. I intend on reading up about botox, and if it could affect me having PTC.

I am sorry to hear your diagnosis. Am curious though, you have not had a lumbar puncture done, as this is usually the way to find out your intercranial pressure. I would suggest maybe a second opinion, or yes get on your doctor immediately. Sight is the biggest problem with this disease and some loss you can not get back. I have lost most of my peripheral over the last few years. I am unsure why you are not getting an lp or something to reduce your pressure, as this will help your eye sight. My prayers are with you, it never hurts to get a second thought on it. Sometimes you have to be your own advocate, if you do not see results from one doctor, find another in that specialty.
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I will make sure that I bring up the LP when I see him again on Tues to get this nerve study done. If I do not feel satisfied with him after that, I will get a 2nd opinion from another local neurologist that a friend of mine goes to for her MS.

The diagnosis and treatment process can definitely be overwhelming and frustrating, so hang in there. I think the second opinion and other advice you've gotten makes sense. I know I wasn't diagnosed w/ PTC until they got result from my spinal tap, and anytime they think I'm having issues that's the first test they do..if you do have PTC, you should have some immediate relief. Good luck w/ all your tests, and definitely keep us posted!

Did you ever get a lumbar puncture?

Hope all is well with you!