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Another dx to add to my list

Mar 10, 2016 3:59 PM

I've had a really bad day. Anxiety off the charts last night and into this morning. Didn't sleep until about 3 or so. Got up at 6:30. Everything was going okay until I got to the eye doc. Optic nerves are still swollen. Confirmation of diagnosis of pseudotumor cerebri. That scared the crap out of me. Walked about a mile to get to my next appointment(by choice, with only 1 stop). Got lunch. Had my ultrasound which was scheduled but then had to wait to see the radiologist. The small abscess is still there but there is another one underneath my right breast that I had no idea about. So his response on that one was go back to the infectious disease specialist. Well, the other day she told me no more IV antibiotics right now, so if one starts to fester, I need to go to the surgeon. Just waiting on them to actually look at the report(surgeon) and get an appointment. Just absolutely fed up right about now. Mom is bringing the little ones over to me tomorrow to cheer me up, and I could really use it right now. Thanks for listening. I need to go back to my hiddy hole right now and just forget this day ever happened.

Mar 10, 2016 5:00 PM

Amanda I must say that when you described your headache and the swollen optic nerve my first thought was pseudotumor cerebri. I had this the year I turned 16, we won't say how many decades ago that was. :-) But please don't panic over that diagnosis! I read that treatment for it has changed for it from when I had it and it's not supposed to be as scary. When I had it treatment was high levels of prednisone and spinal taps. My pressure was so high I lost my sight and our local hospital wouldn't do the spinal tap because it was so dangerous and they didn't want the responsibility, so they sent me to Children's Hospital in Buffalo. I was right at the cut off age for going there. I had three spinal taps in three months to reduce the pressure.

Good luck and if I can ease your fears any let me know!

Mar 10, 2016 5:03 PM

PS it has never come back for me, but some for some I'm afraid it does.

Mar 10, 2016 5:15 PM

Thank you Ann. So nice to have somebody else who understands. At this point, just trying to come to grips with it. I honestly lost it on the phone with mom after that appointment. The biggest thing they want me to try to do now is lose weight. That should help get some of the pressure down. Is a tap required for a confirmatory diagnosis?

Mar 10, 2016 5:53 PM

I'm so sorry you are going through this, Amanda! Ann- wow you lost your sight so young! I am just heartbroken by all this pain we all must endure! (((Hugs)))

Mar 10, 2016 7:03 PM

amanda, they did the tap to draw off some of the pressure because it was so dangerously high. At the time they said I was weeks away from not surviving it. I don't know if they still do the taps anymore. I do remember they kept telling me to "pant like a doggie" to help bring the pressure down during the tap. It was a week or two after the first tap that my vision came back. The headache lasted close to a month after they started the prednisone and did the first spinal tap.

I remember I had a very strange reaction to the prednisone, I couldn't taste the flavoring in soda anymore, just the carbonated water...I lost my taste for soda for a LONG time after that. Even now 30 years later I don't care for soda. LOL

Mar 10, 2016 7:18 PM

I can so understand your losing it. I was in such bad shape by the time they figured out what was going on that I didn't really comprehend what was going on, but I remember going to the eye doctor and having the field of vision test and them telling my Mom that I couldn't see, but they didn't know why. They wanted me to see a brain specialist yesterday. This was on the Friday before Easter that year. Easter Monday I went into the local hospital and they did a CT scan and admitted me right then and there. At first they said it was a brain tumor, but then the results came back from the CT scan the next morning and they said it wasn't a brain tumor, but psydotumor cerebri. I think it was a day or two later when they sent me to Buffalo Children's.

My family was terrified that first day. I was sleeping twenty hours a day and couldn't eat because every time I tried it came right back up. My doctors in Buffalo were great. I still remember one of the interns, not his name, but that he took the time to talk with a terrified almost 16 year old about her drawings and even drew a picture in my sketch book. I still have that sketch book too.

Mar 10, 2016 7:35 PM

Ann, my biggest concern I think right now is just getting the pressure down already. It seems like I'm fine in the morning when I first get up but the longer the day drags on, the worse my headache gets. Not currently on any diuretics at this point nor on any migraine meds. Not really wanting to do Topamax if it's offered due to history of kidney stones(1 time). Also can't do high-dose steroids due to other issues.
I just don't know anymore. Just really tired.

Mar 10, 2016 7:37 PM

Amanda, I'm sending big gentle hugs! Though we don't have the same problems, I understand being overwhelmed. 🙂💕🙏🌼

Mar 10, 2016 7:53 PM

Amanda, I just looked at the Mayo Clinic site and it looks like they start with a fluid pill now then move on to other options if that isn't enough. Lasix was one of the ones they mentioned. Or a glaucoma medication. I don't see prednisone listed, so I think that's one of the things they have changed in the last 30 years. If I remember correctly my headaches were worse at night. Several times I tried to go to school, but Mom had to come pick me up just a few hours into the day because my head would hurt so bad.

By the time they admitted anything was wrong it was really bad. I was sleeping for 20 hours a day just to escape the pain. I'm here with you and will help you in any way I can. I've been in those shoes and I know how uncomfortable they are.

Mar 10, 2016 8:06 PM

Here's a link to the page I'm looking at: http://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/basics/definition/con-20028792

I did find on there where they do still do the spinal tap, they call it a lumbar puncture now though and they don't try to relieve the pressure with it anymore, now it's used just as a diagnostic to measure the pressure and check glucose and protein levels.

For tonight, I'd go to bed and get some rest. Tomorrow morning will be better to absorb information. Try not to let this scare you too much, it's very, very treatable. Even more so than when I suffered from it. I'll keep looking up information for you and send you what I think might help. I hope you are able to rest and feel less anxious.

Mar 10, 2016 8:11 PM

Ann, I think that glaucoma pill is Diamox if I'm not mistaken. And the one thing that is concerning me right now is that as of now, I'm on Provera to regulate my cycle. I've been reading and found that oral contraceptives are a BIG no no with PTC. I'm debating on calling the neuro and asking if I need to come off it temporarily or what. But in turn, if I did that it would lead to more migraines(I know from personal experience). Just have so many questions tonight.

Mar 10, 2016 8:17 PM

I had just read that myself on another site. That site is contradicting the Mayo Clinic's information in several areas. It's following closer to what was done for me in the 80s. I'm gonna keep digging. We'll figure this out. It might be a good idea to talk to the nero, he/she may have other suggestions as well.

Mar 10, 2016 9:51 PM

Yep, I think you are right on that one. I'm going to give them a call tomorrow afternoon. Need to see if I can get an earlier appointment anyway. At least to start to relieve my aching head. Ouch!!!!!!!! This is day 3 for this one and it just keeps waxing and waning but never goes away. Tinnitus is also driving me bonkers!!!!!

Mar 10, 2016 9:58 PM

I hear you there! My ears have been ringing for a month now. Sometimes if I move my head just right I can get it to stop for about ten minutes. Good luck and I'm going to continue my research in the morning. It's way past my bedtime tonight. LOL

Mar 10, 2016 10:00 PM

Good night and thank you. Many blessings and its past my bedtime as well.

Mar 11, 2016 6:25 AM

And of course, I wake up this morning with a rip roaring headache and my cycle in full force. Back to bed sounds like a pretty good option for me as well right now.

Mar 11, 2016 6:42 AM

Ugg, sounds like the right place for you to be today! Hope lying down helps. I'll let you know if I learn something new that might help.

Mar 11, 2016 8:15 AM

Yep, it is the right place for me. Maybe I'll find some motivation at the bottom of my coffee cup now.

Mar 11, 2016 1:53 PM

Nope, no motivation found. Zero, zilch!!!! Headache still there...... It needs to go away!!!!!!!!!! Neuro called but of course, I was in the shower. Hoping she will call me back again. The only thing that really helps is sleep right now. Just feeling awful. Oh and I'll be damned. There is something in that breast. I can feel it now. Grrrrr!!!!!!!!!!!

Mar 11, 2016 2:34 PM

So sorry that coffee wasn't holding your motivation! I remember just how tired I felt when I had it. I don't remember if the constant sleep was to get away from the pain or if I just couldn't stay awake. I remember that it got to the point where if I lifted my head I'd vomit. It wasn't until after the first spinal tap when they reduced the pressure that the headache eased. It was a quite a while before the blind spots went away and then the double vision.

I'm curious though, are your blind spots white? I'm asking because mine were. For several weeks all I could see was white. Then I had double vision for a week or two. I missed over a month of school.

Mar 11, 2016 2:47 PM

I don't even have a clue what a blind spot is at this moment. Sorry. All I have is the double vision at this moment and of course, the headache. Going back in to see neuro on Wednesday afternoon. This is not okay for me. I just want to lay still and sleep. No vomiting but occasional nausea. This is so exciting!!!!!!! NOT!!!!!! Going to try to go back to bed right now,

Mar 11, 2016 3:24 PM

Have a good rest, I'm praying that being horizontal will give you some relief.

Mar 11, 2016 3:26 PM

Surprisingly it helps if I just lay flat on my belly and bury my head in a pillow.

Mar 11, 2016 3:31 PM

Hmm, makes me wonder if bending the neck that way is somehow opening the vein that they think gets blocked? It's worth a thought.

Mar 11, 2016 4:42 PM

Hmmm, that is an interesting thought. I don't know If this makes sense to you but it feels like the majority of my headache is coming from behind my eyes. I also haven't done a whole lot of research but I was diagnosed last year with a very mild case of spina bifida. Kind of gets me thinking that some how it's related.

Mar 11, 2016 5:24 PM

That makes perfect sense to me. Most of the pain is thought to be from the pressure on the optic nerve I believe.

I haven't read anything connecting them with each other, but it's still an avenue to explore. I'll have to do a search on that idea after supper.

Mar 11, 2016 6:35 PM

Ann, the Excedrin seemed to knock out the worst of the headache for now so that's a start. At least I can have a few hours of relief to get some chores knocked out of the way.

Mar 11, 2016 6:55 PM

That's good to hear!

I've been busy most of the day, so I haven't had much time to research. At least I haven't dislocated anything other than my wrist that dislocates even with the brace on. Hope I don't pay for over doing it tonight and tomorrow. :)

Mar 12, 2016 12:34 PM

Take it easy & rest Amanda. Hugs & prayers! 🙂💕🙏🌼

Mar 14, 2016 7:51 AM

If I'm in bed, I'm fine. Once I start to get up and moving, headache within about 10 minutes, give or take. I believe this is day 7 or 8 of this crap. Going to request a tap at my next appointment, just to see where the pressure is. I feel miserable. Going back to bed for a little bit.

Mar 14, 2016 12:28 PM

And another 5 day run of IV antibiotics for the new abscess underneath the right breast. Fun times!!!!!!!

Mar 14, 2016 2:23 PM

Ugg, this has not been a good year for you has it. I wish I could take some of this away for you. We're here for you. :( Sending you positive thoughts and cyber hugs.

Mar 14, 2016 3:15 PM

No, it has not in the least bit. But this sure beats the alternative. My first thought after I spoke to the radiologist was, Oh no, I'm screwed with it!!!! Well, at least they aren't going to wait and let it fester already. I still might have to go in next week for a recheck but this is the best I can do for now.

Mar 15, 2016 2:04 PM

Ann, is there anything that I really need to ask tomorrow afternoon? Going into neurologist appointment at 12:30.

Mar 15, 2016 7:11 PM

Not that I can think of right at moment, other than asking them to explain what they are going to do for treatment. I really didn't have much choice in what they did with me as I was only 16 at the time. I do remember that it took a couple of weeks of being on the medications before the headache went away. It sounds to me like they caught your case much earlier than they did mine, so hopefully the meds will kick in faster for you. If I think of anything before I have to leave for my allergy appointment tomorrow, I'll be sure to let you know.

My biggest advice is to try not to panic.

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