First let me say welcome and that i am sorry you have to suffer with the rest of us,but you are not alone. Please remember that no question is stupid and im sure someone here can help you with just about anything. As far as the medicine Give it a good six weeks that way your body gets a steady amount to it. Please remember that sometimes taking this med or meds will make you feel better so take then. I hope i helped you in some way.

MandyRee

We are glad to have you in the group. You will find a lot of support and knowledge here. I am newish to this disease too and I dont think I would have made it without this support system!
I know what you mean about taking meds. I really worry about it but I think they are helping. It took me about 2 months to adjust and another month to get my electrolytes straightened out. Be sure and have your electrolytes monitored every couple of weeks. Once I got them under control I felt more like myself.
When I first started taking diamox, my ophthalmologist wanted to check my eyes every two weeks to make sure the swelling was decreasing. He said if he sees no change in swelling or the swelling is worsening he might want to up the dosage.
Good luck and I hope your vision gets better soon!
Emerson

Thank you both.
I saw my Opthamologist one week after the LP and starting Diamox. He said that he saw a slight decrease in the swelling and that I didn't need to come back for 2 months. Maybe I will schedule an appointment sooner though.
He didn't prescribe the meds though, my neuroligist did. Do most people with this go to see both doctors as well?

How do they monitor your electrolytes?

Welcome JT.

It took my paps a few months to clear up, completely. I went back to the doctor every week or so because while my optic nerves were healing I had weird visual symptoms. It's crazy but as the swelling decreased I had the same signs and symptoms that I had while they were swelling. Just something to keep in mind.

If your doctor already noted a decrease, it sounds like the dose of diamox you're taking is working. Try not to worry too much.
I also suffer anxiety and depression off and on. I've been on as much as 1500mg's of diamox. I think anything under a 1000mg's is tolerable.

Betty

Hi JT and welcome.Sorry to hear that you have to joined our "club" but a good club it is. We have room for everyone!

I wonder, do you feel better since the lp? Your opening pressure was quite high at 37, and if they took some of the csf off, it could be you now feel relief. It can and does work as a therepy for some people, but it has its risks.

Paps,Papillodema are notoriously difficult to pin down as regards healing.
Some, heal within weeks, some take months. I have had paps since my diagnoses, two years ago, and even after meds and a Vp shunt are only now starting to heal.

As for Diomax, give it some time. To get bad and good! It usually takes about 6 weeks to really start to do its job, but can have a quicker responce in some. It also takes , you, about three months to get use to it to. You will find plenty of posts about how best to deal with the side effects. But, maybe you will be one of the lucky ones and have no symptoms. How cool would that be?!

Try not to get too anxious. thats what we are for. dump it all here. I think , at one stage or another, we have all suffered from a type of depression and some of us take medication for it. As long as your neuro is aware there is nothing to worry about.ok?

Always tell the neuro everything! That way they can treat you the best they can. I used to think, Oh thats not important or no big deal till I found out it was. Now, my neuro and I are very oped and straight with each other. It works so much better that way.



I hope you will be glad you have joined us. Ask anything you like or just chat. we are all here to help and support each other. Cath.

welcome JT! when I read your post about not having headaches.. It reminded me of when I was first diagnosed. The Dr. asked if I had headaches a lot and I said "no". three weeks after starting the Diamox, I saw the Neuro who asked the same question..and my answer was I'd had a headache for sooooo loong that it had become normal. I had the occasional (3x a month)ice pack HA but until I started the meds I had no idea what it felt like to have a headache free day. I hope you don't ever experience those..Of course I've been dealing experiencing these for 10 yrs.. so maybe I'm not crazy?

Jt,

First welcome!

I am in the same boat as you, and we almost get ignored because we are not as bad off as others.. (I mean by doctors not people here) But I wanted to comment on you seeing your Opt in 2 months. I did the same thing, it isn't unusual. basically what that means if you are in no threat of losing your eye sight or having permanent damage, so rather then waste your money and time, sit tight. Don't freak out because some one us see doctors several times a week, you don't need that type of treatment right now enjoy it. If your symptoms change, of course call your doctor, but don't worry about the time in between visits.

Try not to worry, we are the lucky ones. Be grateful for that and allow the doctors to do what they seem best, but always remember you are your own advocate. if you think somethign is off, tell them. don't wait just because you don't have an apt soon. Call them and tell them!

I'm feeling the love already! I'm so glad I joined.

Was thinking about the headaches and actually I do have them, just not to the severity that many of you seem to suffer from. Mine are in the back of my head and I have neck pain. I just contributed it to tension and stress, but I guess this is what it was. They're never bad enough to shut me down. Just have to take some ibuprofen, maybe a heating pad here or there. I also have what I can only describe as a "fuzzy head" which I know doesn't make sense. My head and ears feel like they have cotton jammed in them. I know what you mean fuzzyeyes about getting used to feeling bad. When I had the LP I got immediate relief from the pressure in my head and ears. I told my husband the same thing - that I didn't realize how bad I felt until the pressure was gone. My head felt so light! Unfortunately, alot of the fuzziness in my ears is back. But, I'm hoping that the meds will kick in and help with that soon.

And Young, you're right. I am thankful that it's not worse. And I pray for all of those that are struggling much more with this.

Thanks so much for welcoming me with open arms!

JT, I read your post and could totally relate. I was diagnosed almost two weeks ago. My optometrist actually diagnosed the paps first and told me to get an intracranial mass and PTC ruled out immediately. I had a hard time getting my primary care physician to take it seriously so it was a few weeks later when I finally got into the neurologist. I don't have headaches. I saw the opthalmologist last week and I go it to see her in two weeks. She was amazed at how severe my paps had become and got on my case for not seeing her sooner. (in a nice chiding way, though.) I have many questions also. But just reading through the past posts has already answered so many questions.

One silly thing was the soda tasting funny. I don't drink soda at home, but a glass of diet coke was my usual when we went out. Not anymore. I thought I was crazy until I read other people's comments here.

Anyway, I am sorry you were diagnosed with PTC, but welcome aboard.

Sameen

Welcome!