Hi. I am so glad to have found this group because I have been overwhelmed and confused ever since my diagnosis a few weeks ago, and I feel like noone understands how I feel, physically or mentally. I realize that I am quite the atypical case. Besides being an older (42), skinny (5'10" 164lbs) male, I do not have the chronic headaches or the paps that usually presage the diagnosis of PTC. I hope you will accept me anyway :-D

My journey toward a diagnosis began in July, when I started having weird, aura-like visual disturbances in my right eye. Eventually, I started getting more persistent blurry vision in my right eye, as well as occasional brain fog or drunk feeling that would last a few hours at a time. About this same time, I developed tinnitus in my right ear (not pulsatile, but varying in intensity throughout a given day) and ear aches in my right ear. I went to my GP, and he was concerned about the fact that the symptoms all presented on my right side. I got an MRI and appointments with a neurologist and ophthalmologist.

The MRI was normal. The same day that I got the MRI, my left eye started acting up. By the end of the same week, I had started getting grainy vision (what I have found to be called visual snow in some groups) and had problems with after-images and light sensitivity. I also started getting nauseated occasionally, always associated with my eyes. It seemed like I had a good field of vision but I was missing pieces. I could never put my finger on it because I had no trouble with details or recognizing faces. For some reason, watching TV seemed to affect my eyes less than the 3D world. Also, at any given time, I could count on one eye or the other (almost never both eyes at the same time) being blurry. And I had issues with double vision if I looked far enough to the right or left without moving my head. The double vision has never been consistent and changes in intensity. I will say I had some pain behind my eyes when I moved my eyes sometimes, almost like a muscle had been strained and was sore and stiff.

Oddly enough, the ophthalmologist appointment was mostly uneventful. My visual acuity was 20/25, no swollen ON or any other eye defect. The VF test was normal. The only thing of note was that I was borderline suspect of glaucoma (pressures of 20 in both eyes). Since the initial Opth appointment, I have seen 4 different ophthalmologists, all with the same results. No eye defects, normal VF, no swelling. The last full eye exam was a day before my diagnosis. The last appointment was last Thursday, when I discussed the diagnosis and treatment plan with my personal op.

The first appointment with the neurologist occured in August, shortly after the first appointment with the ophthalmologist. The neurologist did a lot of blood work to rule out things like Lymes, etc. The only thing that was off was my thyroid T3, which was a bit low. She started me on synthroid, although I set up an appointment with an endocrinologist because I wasn't buying into the theory that low T3 was causing all of my eye issues. I felt like the neuro had just grasped onto a diagnosis so she could start treating me for something. Sure enough, the endo said that my thyroid was totally fine and took me off the synthroid.

In the meantime, I was feeling worse. My eyes were depressing me, and I was having more frequent bouts of eye-associated nausea. I slept a lot. My girlfriend broke up with me because she was tired of hearing me complain (I couldnt blame her, but I just felt bad l all of the time). Oddly enough, I generally slept really well. I always felt better when I could close my eyes and lie down.

Well, one thing led to another; and I decided, on a lark to take a low dose aspirin one Sunday. I have no idea if it was coincidence or not, but my eyes got noticeably better for a few hours. However, after about five hours, I got a horrible headache that left me in bed with ice packs on my head. Not to be daunted, I tried the aspirin again on that Wednesday. Again, the eyes got better, followed by a terrible headache. This time, I got scared and went to the ER where they did a CT with contrast to rule out an aneurysm. CT was clean. I was stubborn and kept to the low dose aspirin regimen; however, my eyes would not get better and there were no more headaches. The only thing this got me was an appointment with my neuro and an LP.

So, I got an LP, which was a horrible experience despite the fact that they did it with fluoroscopy. I had a 10-day low pressure headache, and the doctor who performed the LP was very unprofessional. I still question the results, but my pressure was significantly high (32-36) to make it hard to argue with the ultimate diagnosis of PTC. As an aside, I do have an appointment with a second neurologist to get a second opinion. After the hypothyroid incident, I lost some amount of confidence in my current neuro and want to make sure she did not miss something. But, most likely I am tilting against windmills and will have to deal with PTC for the rest of my life. The denial phase is always the ugliest for me lol.

And here I am, taking Diamox 500mg 2x a day, hating every day that I am on the drug lol. Of course, after reading all of the stories here, I am very grateful for not having the headaches and the paps. Please believe me when I say that I cannot even imagine the strength that is evident in the stories I have read here. Even with my relatively mild symptoms, I find myself to be depressed; and the Diamox makes so many tasks that much harder. I never know what is a symptom of the PTC or a symptom of the Diamox. Mostly, I am just scared that I will start to get paps and not know and lose VF without realizing it. And, since I most likely have a secondary case (pretty sure it was caused my a certain antibiotic, but possibly another prescription drug I was on at the time all of this started (I came off both drugs at about the same time at the end of June)), I do not know if there is any hope for a remission. Anyway, this is my story in a nutshell. I am not shy, so feel free to ask me any questions or comment on anything. I have kept a log along the way, but I wrote this from memory and may have gotten some details out of order.

Thank you so much for allowing me to come on here and post. It feels so good to just get it off my chest. :-D

you dont need to down play ur pain we wont judge you IIH is IIH if u have it then u have our support. unconditional support dont let it get you down dont let it win your journey will take u to a few lonly places but thats y we are here you are not alone. the LPs get better in time they r by no means a cure or treatment but it dose make the symtoms subside for a while. Diamox always made me feel quite sicky if u r findding that then i would suggest u ask ur doctore for something called sicklasine (anti sicknes drug probably spelt it wrong) welcome buddy

Hi Mark, welcome to the group! I'm sorry to hear you've had such a struggle with diagnosis. I think the log is a great idea..it will help you track everything and give doctors more information for diagnosis/treatment. We actually recommend it for everyone and have examples in the Useful Guides and Print Outs section. I haven't been doing very well with it lately, but try to include symptoms, meds, food, and sleep patterns when I'm in a pain cycle. Most of us have found some triggers that way..it's an adjustment, but can be manageable if you find the right treatment. Remission is also possible, but I don't think it's the norm. It's really difficult to measure because most people that have success aren't reaching out in these forums. I know I personally had a short remission and functioned without any meds or treatments for several months, but when IIH came back it was mad..lol. I was diagnosed in 1999 and I think you'll find other members that have been dealing with IIH for decades. There's a lot of support and good information here. Feel free to enter posts or contact any of the Moderators or Admin Team with questions or concerns.


Julie

Wow, that does sound frustrating and I understand why you would seek a second opinion. I hope it all works out and that the diamox helps you!

Hi Mark and to the group.

We do allow men here, so feel free to hop right in ;)

I, too, recommend that you start that log. I hope you won't have to continue searching much longer for a resolution to your issues. Maybe the Diamox will do the trick!! Just, in case though, keep track of what you have tried and the results.

Hi Mark and a very warm welcome to the group. The reason why we don't have a seperate forum for men is simply because we are all in it together. As Sammy so rightly pointed out, IIH is IIH no matter if you're male or female. The symptoms are the same.

You certainly have had a rough ride, and whether you have the pap and headaches or not, it is still debilitating. We know IIH isn't life threatening, but it most certainly is life changing, and when your life is thrown into a completely different direction, and you no longer recognise the person you were, you mourn. Not many people understand that, that you are in a period of grief because you have lost the person you were, and are in a limbo because of the symptoms.

You're not alone for feeling this way, we all do , and I'm so glad you found us, because now you have people who understand, and get you. You have showed an amazing determination and you are doing all the right things. We encourage members to keep logs, and we have one for medication and one for symptoms, that you can download and print. This isn't just for you, but to give your doctors a more detailed and accurate account of what's been happening inbetween appointments.

You can have IH without papilledema. What you need to know about Papilledema ,and there is information on there that you can download too. The icepacks are a great idea, I usually recommend a cold cloth on eyes and forehead, because I personally have found it helps soothe the headache and the painful eyes.

We are all here for you, and if you need a rant, as well as ask questions, you can rant in the group huddle. It's a good place to get things off your chest, because you know that we'll understand. You're not alone you're with friends now.
Heidi

Thank you for the warm welcome! I am getting some blood work done tomorrow to make sure the Diamox is not eating me alive (sometimes it sure feels that way). I also have a sleep study coming up to see if there is anything I can do there to make things better. One thing I have not been able to get my head around is all of the tests and doctor appointments. That said, I have really learned a lot from reading the posts here. All of the stress, side effects from IIH and Diamox, and attitudes from doctors is hard to deal with sometimes; and I am glad there are people who understand!

Hey Mark, so how's your journey been going? Anything new? I hope you are feeling better ;)

Hi, Wylee,

It's been a struggle. I have to say some things were getting better and then lately, things got a bit worse. I have been meaning to post a bigger email with an update and questions about what works and doesnt work and see what everyone thinks, but I have been struggling with work, which has made everything more difficult.

Thanks for asking! :-D I will try to me more active.

Mark

So sorry to hear that things are still so rough for you, Mark. I was hoping things had improved for you.

I am wondering how your second opinion went, and the blood work. Are the docs still in agreement that your issues are ICP related? If they do, maybe a change in meds is in order. I found that adding Furosemide (Lasix) to my Diamox that it really helped. Of course, that was after trying many different types of diuretics and combos of them too. Especially if your symptoms are what's creating problems with work, which is so very common, you may need to push your docs for help. Just like everything else, there are external factors that can affect ICP, like the weather, as well as the internal ones, like stress, hormone and weight change, even change in diet. Makes things so darn confusing, for us and the docs.

It has been such a long and frustrating battle for you. I hope that you are able to get feeling better soon.
And thanks for the update. I know how difficult it can be. Sometimes it hurts to think.

I'm so sorry things have been so difficult for you Mark. There are too many issues all at once with IIH which make it very stressful and hard to deal with one at a time. Always remember you can only do what you can do, and that we are always here for you. Whatever we can help you with, we will. Please keep us updated when you can, but don't worry about how long between your postings. Like we say, we're always here when you need us for whatever the reason.
Heidi xx

there is documented evidence that Diamox and Lasix may work synergistically.

MarkyMark, noticed you haven't been on in a few weeks.  Everything OK?

Mark???  How are you doing?  An update would be wonderful!

Hey Mark,

I am really concerned.  It has been so long since you have been on the site.  I do hope you are OK, maybe busy getting your life back?  Please drop us a line when you can.