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Looking for some support, help and advice!
A few weeks ago I went to the eye doctors because my vision had changed, and I had headaches for the past two-three months. I attributed it to my vision change. I also noticed that I just felt “off,” lots of pressure in my head--- slight pain, but a lot of deep deep pressure. Never in the same place, sometimes frontal, sometimes base of skull. Also my neck hurts every once in a while. Never pulsating or throbbing. I have a hard time sometimes explaining where exactly it is, I also noticed that my right pupil was sometimes bigger then my left, as well as my eyelid. Again, I thought I needed a new pair of glasses. My eye doctor said I needed a new prescription due to a pretty big vision change. He also so said I had a “spot” on my optic disks he was concerned about, he mentioned pseudotumor-cerebri. So he had me do a visual field test which I felt like I nailed! His office called me a few days later and told me to come in for two more other types of scans because my visual field test didn’t go all that great. I had “areas of concern,” he said. I had a CT essentially of the optic nerve, and photographs, both of which showed papilloedema bilaterally (mostly in the superior portion of the eye). He said he is almost 100% sure it’s PTC. I told him I can’t go blind, and he said he wouldn’t let me. So long story short- things have just kind of exploded from there! He walked over to my primary care doctor (same area) to get the ball rolling, suggested my neurologist, said he would personally cally him. The PCP doctor called me the next morning to come in. He also told me I needed to see a neurologist asap. My PCD scheduled me for an emergency CT w/o contrast to rule out any other causes of ICP, and thankfully- negative for any tumor. I was SOOO scared! Other symptoms I have: When I look at the top corner of my eyes it has kind of blurry edges, and sometimes I see sparkly lights when my eyes are open and closed. Very small, pretty like things! My head wakes me up at night sometimes, especially in the morning or afternoon (I work nights) and if I tilt my head side to side or up and down sometimes I get overwhelmingly dizzy. I am a little nauseous. I have noticed that lately I walk into things with my arms. Things also seem to just pop into my vision site. Sounds funny doesn’t it? It’s like a focusing issue. I am normal weight (on the high end of normal), BP fine, and I just had a whole bunch of labs drawn today. I’m 25 y.o, and female. I see my neurologist for the first time on Monday at 8 am, and I am excited/nervous. I just want this all to end! I went into the eye doctor for glasses, and I feel like my whole life is slowed. No OTC medication is working for pressure/pain, and Foricet is doing NOTHING for me. I really don’t do pain medication, and it seems like nothing is working! Do you guys have any recommendations on what to ask the neurologist on Monday? Any suggestions on how to get rid of the pressure? PS: I am a little scared that when they do the LP (my PCP said I will HAVE to have ASAP) my pressure will be normal and everything will think I am making this up?? I don’t know why I have that fear! I told my regular PCP that on the phone and he told me to relax, and that there is no way I can fake papilledema! I read online that sometimes Opening pressure is normal---- but it’s still PCT. Does this happen a lot? I just cant do the headaches anymore. : ( Sorry so long! Thanks Posted on 06/15/12, 02:28 pm |
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If you have PCT this is the place to be. There are a lot of people on here with a lot of information. I was diagnosed in March at my eye doctor. I am still learning a lot, but after 4 months I feel like my life is starting to get normal again. Probably what will happen after your LP is you will be put on medication. The one I Amin is Topamax because I am allergic to sulfa, but the most common is diamox. They both seem to have side effects that will take some getting used to.
The most important thing I've learned from this process is you need to slow down and be patient. The only way to really manage the disease is through medication, eating well and a slower, less stressful lifestyle. (much easier said than done, I know!) I have really noticed my pressure is awful when I push myself too hard though. Good luck to you and feel free to ask lots of questions. 
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It effects us all differently too I have come to see. I was diagnosed back in August and my opening pressure was 39, visual fields were slightly abnormal. I was told it was bc of my weight blah blah blah....I've lost very little weight (gained a ton after diagnosis bc i was upset and ate my frustration out) and now I am down to 210 from 223 and had a follow up yesterday and my paps are gone and fields are normal. He said it apparently wasn't a weight concern because it went away without losing very much weight.
So I am now in remission from this as of yesterday and hope you get there too! Don't give up hope and when you first start taking meds (if you are put on diamox) you will feel like you want to die! It will pass. Good luck to you
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Hi Hula and welcome.
I'm Cath and have been around here for a long time. I have been sick since 2008 and know your story already! Its so like most of us here I think. So many started this journey with a simple trip to the Opticians... I am just going to answer the questions you have asked in your post.If, you need any help, just ask, me or any one here. We are and have always been a team effort. First, the scary part, that you could go blind. In all my time on this site I have never heard of any one going blind! Losing some vision ,yes, but not in any huge way that really interferes with their lives. I, have lost a lot of vision but still manage to get about with little problems I do ,now use a walking stick but that's more for safety. No big deal. Really, the only people who have huge eye problems seem to be the ones that are not , or were not , taken care of in time. ( again, me). So, but that huge worry to bed. Field vision tests, we all hate them,,,,and they don't even hurt! But, they do tell the truth. You cant fake them. But, good side of it, is they can ,painlessly, chart our vision, so they are a necessary thing. All the symptoms you are experiencing are typically of Paps, Papilloedema, swollen optic nerves. The next step will to get you on the meds, Diamox, to help bring the swelling down and get rid of these nasty, albeit pretty slide show! Now, have you had an LP before? If not , let e know and I can walk you thur it. It really is not as bad as you think it will be. The worst part is the waiting for it! Read back on older posts. They can be a great way of explaining things and also to let you know, you are not alone in this. Any help I can give you, just call. Cath
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Thanks everyone so much for all the words of support. I feel so blessed to not be alone in the diagnosis process. I'm nervous about going to the Neuro on Monday, but more excited too!
I had a really bad night last night, but better tonight and today. My headache is like a 5/10 but my vision is kinda off. I feel almost like my eyes are not working well together. Like they can't focus. Anyone else have that? I'm super dizzy if I look up of lean my head back too. Hope you all are doing okay! I'll keep you all updated about Monday. Thanks everyone :)
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Hi Hula and welcome!!
I'm having a lot more problems with my eyes this time around. My vision is cloudy a lot, and I'm always looking through spider webs (black lines and dots all over my central vision) even when I don't have the cloudiness. Dizziness is a common everyday thing for me as well... As far as pain goes, Fioricet never did anything for me - it's used primarily for migraine headaches. I need Vicodin in order to make the headaches tolerable. If you're not getting relief from your headaches, you may want to talk to your PCP about something stronger for them. (Besides, Fioricet/Fiorinal have caffeine in them - some people find that caffeine raises CSF pressures - not what you want for a person with PTC) Beard, Krislen and Cath are right about management of this disease - medications, weight loss, lowered stress, etc. are all critical components of management. And some people do have a lot of luck with medical management of PTC, but it does require patience. I had my first bout of PTC back in 1991, and had many years of remission with an LP shunt placement. My LP shunt doesn't work anymore, and I've been in a full-blown bout of PTC since February (100 times worse than my first time around). I'm opting for the surgical route again and will be having a VP shunt placed on Wednesday.. I know how scary this can be when you're first going through it - heck, it's scary this time around, too!! But as others have mentioned, you'll get through this and will find the treatment course that works for you. And ask questions - this group has lots of folks who have been through the gamut of tests, treatment options, etc. Everybody here is great, and they have a wealth of knowledge to share. Lots of hugs and prayers coming your way!!!
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Hi Hula!
Welcome! I am new here to, I was diagnosed in March, so I am still figuring things out. Just wanted to say hi, and that I'm glad you found this site. It's been very helpful to me! Beth
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Hi Hula, I don't have tons to add but just say your not alone, i was DX at 25 with IIH ( it was two days after my b-day so i almost always have to look up my age)
Your doctors seem to be doing well by you so far which is great! lets hope the neuro you see is just as good. I hope your LP goes well and you can find a way to control your pressure so your headaches go away. Rachel
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So I went to the neurologist today for the first time.
When he looked in my right eye he said he didn't really see papilloedema, but has to call my eye doctor because he said the eye doctors tomography scan picked it up. He did say he could see it in my left eye though, not the entire optic disk but some of it was definitely swollen. We went over my symptoms. He said it sounds like its pseudo but he needs a MRI and LP, and that both will determine treatment. He said that if my MRI is normal we will do the LP (the MRI will see more than CT he said) and that if te LP has high pressure he will start pseudotumor treatment. He did say though, that if the opening pressure is normal, it wouldn't be PTC. And that it would be benign migraines. Is that possible? To have papilloedema with just migraines? I heard CSF pressure fluctuates? What if it's normal that day... And bad te next. And then he starts just migraine treatment. I dont want to go blind! What do you guys think? Obviously I should just calm down till the LP. He is calling me tomorrow to schedule it.
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Till you have the LP i wouldn't worry so much about the what if's.
I felt pretty good on the day i went in for an LP, even though at that point i had a neruo that said i for sure that i didn't have IH after looking at me 2 eye doctors saying i didn't have paps ( and two more saying i did) and a lot of your to young to have that, and the best so you don't get headaches well i don't think it's IH then. Found myself a great doctor who listen to me and did what your doing now CT then MRI then LP and low and behold i had a OP of 31. which for some doctors still wasn't enough but you know what i dropped them kept the good doctors and i can still see. ( for me it all started when every time i stood up my vision would black out for a moment and yes i had doctors say idk what caused that but you don't look like you have paps to yes you really do have paps in both your eyes lets do a scan)
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Till you have the LP i wouldn't worry so much about the what if's.
I felt pretty good on the day i went in for an LP, even though at that point i had a neruo that said i for sure that i didn't have IH after looking at me 2 eye doctors saying i didn't have paps ( and two more saying i did) and a lot of your to young to have that, and the best so you don't get headaches well i don't think it's IH then. Found myself a great doctor who listen to me and did what your doing now CT then MRI then LP and low and behold i had a OP of 31. which for some doctors still wasn't enough but you know what i dropped them kept the good doctors and i can still see. ( for me it all started when every time i stood up my vision would black out for a moment and yes i had doctors say idk what caused that but you don't look like you have paps to yes you really do have paps in both your eyes lets do a scan)
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