Where did my eye sight go

By Lisa S Sunday, July 03, 2011

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Hi out there. Two months ago I was going through a 5 week long migriane. They treated it in the hospital with diladed and morphian. After a week long treatment and stay there I was released on steriods and depakote and nuraton. Sorry for all the spelling misstakes. Then on Sunday May 29th I woke up with no vision in either eye. I was blind. It was pitch black dark. What happened to me, where was my sight, why was this happening to me. We went to the ER and was rushed back right away. When the team of doctors came in I recognized only the nurse's voice from a couple weeks before visit. We did a cat scan and MRI and nothing could be found. The eye doctor was called in to do his thing. He found fluid in both eyes along with swelling. The left eye was much worst than the right eye. I cried through the whole exam. My eyes were swallon and red, I was not able to read the chart. Even the big E was not there. They admitted me right away. Monday was a holiday but the eye doctor came in and dialated my eyes and checked the fluid and swelling. It was still there and i was still blind, but most worest in the left now. I was able to start seeing in the right. It was like I was not wearing my glasses at all. Tuesday same thing. Wednesday was a big break. I was really seeing well out of the right eye. The headache though, was still there and worest from my eyes up to the middle of the top of my head. Oh my goodness!!! I wanted to crawl under the bed and die. The nights were really bad. Then a break in the headache. You all know that break. When the pain just stops and goes away. I got to go home three days later still with no vision in the left eye at all. Now here we are a month later and another holiday later with vision in both eyes! Now its not 100% in the left eye, but there is light. The right eye is doing awesome. I've had two headaches since Ive been home, not bad. And Ive been able to handle it with Tylenol instead of the big drugs or a trip to the ER. I go back to the eye doctor every week and the nuro every two weeks and that's ok. I should be off the steriods soon and that's just fine with me. I pray every night that my daily meds will keep everything at bay and that everyone else who suffers from this has good days too. Have good days everyone and keep taking your meds. Smiles...

Very sharp very painful stabbing pain on left side of my head temple area?

Comments (14) | Add comment

Tired of Head Pain

7/ 7/11 3:47pm

You are very brave to go through all this and still have the energy to write about it with humor and grace. My heart goes out to you. Has anyone let you know what all this was or given you any information diagnostically? I am guessing not or you would have said. Thank you for relating your story because patients are the best resource for information. Sadly medical research is way behinds patient experience. Stay well and i hope you never have to go through this again. Here's to your left eye coming back 100%!

Lisa S

7/ 8/11 3:05pm

Thank you for you comment. I went to the eye doc today and he still stands by that the last nuro doc I was with had increased my meds to a toxic level that my size could not and should not been able to handle. The drug is depeakot. Even though some can take more than 1000mg twice a day, I should not have been. And through in the migrain that I had for 5 weeks did not help. They are tapering me off of steriods now to get me back to some normal life, but I think this is going to be my normal life for the at least the next 6 months. Again thank you for your comment.

Tired of Head Pain

7/ 8/11 3:15pm

Your welcome. Is your neuro a headache specialist or just a regular neuro? If he/she is just a regular neuro, I would find a headache specialist in your area pronto, copy the notes you have made here and any others you have and try to get an emergency appointment. Specialists in this area know a lot more than regular neuros and are worth seeing. If you search this website, there is a link to the headache neurologists in the state where you live through the National Headache Foundation, but you can get a referral through other neurologists or your primary as well. Just make sure it is a headache specialist you are seeing, if your neuro is not one. If you are already seeing a specialist then you are in good hands, unless you are unhappy with your doc, and want a second opinion. I hope you start feeling better. I just got off steroids myself and feel much better, but I was not in as severe a condition as you. All the best for a speedy recovery and relief from all the pain you are in. Drink lots of water, and ice on the pain area helps. It is an old remedy but it does work.

Lisa S

7/ 9/11 1:05pm

My new nuro is a specalist and the head of nuro, thank goodness. And to add to it both my nuro and eye doc know each other. That is the best. They are working on bringing me down in dosage of the steriods. I wish there was a quick fix instead of the steriods ( Ive gained a lot of weight) but I know there isnt. Thanks again.

Nancy Harris Bonk

7/ 9/11 12:11pm

It's nice to see you posting, but I am sorry it is under these circumstances. While you were in the hospital, did you have a spinal tap by any chance? Since the eye doctor saw "swelling" in your eye, and other tests came back ok, that may seem to be the next way to go.

DO you by chance have any ringing in your ears, or a "whooshing" sound or your heartbeat at night when you put your head on the pillow to go to sleep? In addition to these symptoms and intractable head pain (head pain that is hard to treat) there is a condition called Idiopathic Intracranial Hypertension, IIH, formerly known as Pseudotumor cerebri. We have lots of information you can read about IIH in these links, but I would contact my doctor to discuss this right away - especially given the symptoms you've mentioned. When you get a chance take a look at Idiopathic Intracranial Hypertension (IIH) - The Basics and Headache Attributed to Idiopathic Intracranial Hypertension - The Basics and The ONLY definitive way to diagnose pseudotumor cerebri.

After you read these articles, please let me know what you think so we can get you the help you need. Please keep me posted...ok?

Lisa S

7/ 9/11 1:12pm

I certainly will keep posting, as long as I can see the hahahaha. I have a sense of humor now about it b/c its the only way to stay positive about the whole situation. Both the eye doc and nuro think the situation happened because of the high dosage of Depakot and the headache that I had have for 5 weeks. I have 20/40 eye sight in the left eye now with no swelling or fluid. The eye doc says now we have to wait for the nerves to calm down and go back to regular. But Im still on steriods (and gaining weight). I will check out those links and see if it goes along with what Im going through. Thanks for the help and have a great day.

Tired of Head Pain

7/ 9/11 2:11pm

Hi Lisa - I'm glad to hear your neuro is a specialist and that he and your eye doc are speaking to one another - something I have had trouble with in the past. Some of my docs won't answer an e-mail from another of my docs, take a referral, or return a phone call - it gets that bad, and I am moving out of LA back to San Francisco because I did get a referral to a good headache doc at another hospital from the one I usually go to and the doctor just never responded despite all the pushing I did, so I am just leaving the area in complete desperation and will probably write him and the hospital a letter when I leave. Don't worry about the weight gain - I am struggling with that too right now, and although it is frustrating, I am more concerned with getting my life back, and have to tell myself that every morning. I have signs up on every mirror in my house! When I feel well enough to start walking every day and back to having a full day of activity, I know the weight will start to come off, so right now I am trying not to put another burden in my basket about how I look. It has been helpful because I don't spend money on clothes and I am saving quite a bit! No one who cares about me cares. I am giving you a link to a talk by a person who was diagnosed with end stage cancer who beat the odds. I found him on TED which is an organization who looks for people who either found orgs. or cos. or have something innovative to say about the state of the world. I found it inspiring, and I hope you will as well. All migraineurs need to keep what he says in mind, and this is what our sharing is for. I took Depakote years ago and was up to 1700 mg/day and then my hair started to fall out. It was helping, but then we had to stop. Everyone is different. Here is the link to paste in your browser, and I hope your eyes keep improving.

http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html?utm_source=newsletter_weekly_2011-06-29&utm_campaign=newsletter_weekly&utm_medium=email

Lisa S

7/ 9/11 8:15pm

WOW! how powerfull! I was moved to tears. It feels so good to have somewhere to talk about things and get the support that you need. The first few weeks I was so depressed that I would not be able to see again. See my kids, the sun go up or down, my husband, or my parents. I was so upset even a call from my aunt who knows ppl who have gone blind later in life due to other reasons and she too has eye trouble, was troubling to me. Thank you for the link. Im passing it along to other ppl to watch and feel the powerfullness that I felt. The day I woke up to see the sun rise I cried for hours. Now I cant get enough of it. My depakot levels were high too. I was taking 1250mg in the am 250mg in the afternoon, and 1000mg in the evening. It was toxic for my size. Im now down to 1000mg in am 1000mg in pm. The only side effect that I have now are the trembers. That med was tapered off also. Thank you soo much for the link. It will keep me inspired and I will refer back to it ofter.

Teri Robert, Health Guide

7/10/11 1:39pm

Wow. That's one of the best videos I've ever seen. Thank you so much for sharing it.

Teri

Tired of Head Pain

7/10/11 3:57pm

I thought so as well. I watched it twice when I first saw it just to make sure I heard it correctly, and am glad I could share it with you. It is a great reminder for all of us patients that we know a lot more than we think we do, and we can get the answers and the treatment we need if we advocate for ourselves and believe in ourselves. I watch that thing at least once a week as a reminder! So glad I could pass it on!

Teri Robert, Health Guide

7/10/11 4:16pm

I watched it twice too - and took notes!

He made such a great point about how the Internet has changed things with all the information we now have access to. I sometimes where I'd be without the Internet. At one point, I was in bed all day five or six days a week with the Migraine from hell that nothing helped. I thought neurologists were Migraine specialists, so I'd seen a bunch of them who were no help. I finally decided to look on the Internet for information and met someone who had been helped a great deal at the Jefferson Headache Center in Philadelphia. That's how I learned the neruologists aren't necessarily Migraine specialists, but that specialists do exist. My husband and I drove eight hours each direction for me to see Dr. Young at the Jefferson. It was hard, and it was expensive, but it was so worth it. Now, I usually get at least eight weeks between Migraines. I have to wonder if I'd even still be here if I hadn't gone online looking for help.

I'm going to blog about that video and share it with as many people as possible.

Thanks again!!

Teri

MigrainePuppet

7/10/11 6:03pm

I wanted to thank you for sharing this video too. It is a great video. I've also been following Regina Holliday, who he mentioned in the video, for over a year. She has depicted much of her advocacy work through her art work and art shows. She is truly a remarkable person.

Breanna

7/22/11 12:29pm

Good luck with your care. I hope this never happens again to you or anyone else who suffers from migraine headaches because it is very scary and concerning to say the least. I am glad you regained your eyesight? Do you know why you lost your sight? Have you been diagnosed with excess fluid retention, pseudo tumor...a spinal tap will determine if you have that. Good luck.

Dmitro Woychuk

7/22/11 11:42pm

Hi Lisa

Yes, I have two university degrees and I still can't spell. Do you suppose that if we send Teri a hand full of hearts she might install a smelling check in this 'add a coment box' ?

I have never seen...uh, heard of anyone going totally blind with a migraine. Surely it must have had more to do with the drugs these doctors were giving you. I always Google any drug that is prescribed or recomended for me, but what can you do when you are in the ER?? you are at their mercy.

As Trei mentioned in one of her articles "most, if not all drugs prescribed or used for migraine were origenally compounded for something else. It would do well for you to Googel those drugs you had and get as many different views as you can. It may give you more insight into the nature of your migraine and more what to avoid in the future.

That must have been real scary for you.

I hope things are better for you

Good health

Dmitro

Where did my eye sight go

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