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Losing my eye sight and mind...


concrete_angel
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Pseudotumor Cerebri....I know that is a big word but let me start from the beginning. I had suffer with migraines in silence for the 8 months before seeing any one for it. Finally in April I was given meds to control them. I was feeling some what better, but they have increased my meds a lot. I know that I must do I can to control the migraines, so knowing that one of my triggers is direct sun light. I was off to the eye doctor to get sunglasses to help with that. Well the eye doctor tells me that my eye are doing okay and my prescription had not changed much. He was happy that my eye astigmatism was getting better . With glasses and sunglasses in hand. I thought my life would be okay. A couple days later I started having trouble seeing out of my left eye. I felt like I did not have a lens in my glasses and I went in to the eye glass place that is next door to the doctor office. They checked it and said that things where okay, but that they would make the lens over to make me feel better. I pick up the glasses two days later. Still had problems, and them I devopled a new problem on top of that. I started to have pain behind the eye. Well it's been a month now with the glasses with lost of my vision and pain that has come and gone. I have thought that it has been my migraines all long. But never had these symptoms before. I finally told my husband about 5 days ago. He is worried out of his mind.

Then this Thursday night I could not see at all out of the eye and I went to bed, ten mintues later the pain started. I was thinking migraines so I took my meds. It did not help, when morning can. I called the doctor and was seen that afternoon. She increased my meds and a shot of Tramadol. I was sent home to rest and I kept waiting for the stuiped tramadol to kick in, but NO.. I talk to my bosses that are doctors that night. Which are going out of state for the Thanksgiving week. Well my female boss tells me that I'm showing symptoms of Pseudotumor Cerebri and that I need to be seen the ER. So that they can do a lumbar puncture. Well the doctor thinks that I have Pseudotumor Cerebri and I do need one, but since my anxiety is so high and he has not done many. I'm sent home with pain killers for the time being. I go back to my doctor, eye doctor and make other appointments to precessed to have this matter taken care of on Monday..

My anxiety is go high at the moment that I'm ready to die. I just need some one to listen to me. I'm depressed cause I can't see much and this has taken all my strenght to write this with one good eye. I'm at my end of my rope with every thing. I just need some thing to hang onto at the moment. Life looks so dim at the moment. My mind is racing a million to none thing and I feel uneasy. I have taken my anxiety meds and the E.R. wants me to increase them till I get through this whole thing. I just feel lost, overwhelm, numb, in a daze. Just a LOST... Help me.

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Concrete Angel, this must be terrible to bear. I wish I had the right words to say. But I didn't want to let this go unanswered for lack of knowing what to say. I am listening. I don't know what Pseudotumor Cerebri is but I am going to look it up. Meanwhile, if you want to talk some more, go ahead, I'm listening ...

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Intracranial hypertension (increased pressure inside the skull) It presses on the optic nerve, which explains the visual symptoms. The good news seems to be that it has to go untreated over a long period of time for there to be any long-term vision loss. No tumour involved, "pseudo-tumour" just means the symptoms are the same as if there is a tumour (because of the increased pressure). It must be very scary! Lumbar puncture would probably help the situation, both to rule out other causes as well as to relieve the pressure inside the skull.

Things are so quiet here over weekends, so if you don't get much response that is why. Hang in there. I can understand why you are so anxious.

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concrete_angel--

I read Luna's account of your condition and I am SO relieved for you. As long as you get the proper treatment for your condition, you will not end up blind or incapacitated by headaches.

I know this is scary for you now, but I know it will get better!!

***HUGS***

Catmom

P.S. I am an RN and have a good grasp of most medical conditions after I research them as Luna has done. I had been concerned initially that you had an untreatable condition that would lead to blindness.

You will be okay, sweetie. Please keep posting as much as you can and let us know how you are doing. CM

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  • 4 weeks later...

Went back to the eye doctor on the Dec 10th to have my vision check again. That did not turn out the way I thought it would. Still having pain and my vision has not improved. It's got worse, I have now tunnal vision on the left eye. He brought up to me, not trying to scare me. "Multiple Sclerosis". He asked if I have had a MRI. I said yes, that I had one done in May. But since I wear brace on my teeth, I was told that it can mess up the MRI. So I guess I need a new one after I get my braces off in 2011.

I just can't get the nerve to go to the doctor. I just set and cry a lot, I'm afraid that the doctor will think that it is all in my head and will not do any thing. Since they have just ignore me for so long over my symtoms. Who cares any more. :D. Just really depressed. I just put a smile each day when my husband ask me how I'm doing and tell him that I'm doing good. Even if I'm dying inside.

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Concrete Angel,

I am so sorry you are dealing with this right now with no real answers. As hard as it is to keep searching and not give up, don't. Eventually a doctor will find what is going on. Sometimes it is something that the dr.s don't think of or are not trained in so they don't think about it.

When in 2011 do you get your braces off? Not that is would be a good thing, but I would recommend an MRI asap. I know several people who have had eye issues and ended up with MS. But the treatment for MS isn't quite as bad as some other things.

Also your husband doesn't truely know what you are dealing with if you keep telling him you are ok. I know you don't want to worry about him, but if anyone can help fight for you it is him.

Is there anything that you can do to help relieve your anxiety, even momentarily? Like cooking, taking a walk, writing a letter or making a phone call? As hard as it is to do this, you need to do it for your health and well being. Stress makes everything worse, so it is important to keep yourself as calm as possible (I know, easier said than done) so that what ever is going on doesn't get worse or cause more pain for you.

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Angel, this sounds so painful and frustrating. :D You are in pain and are getting no answers and no help. I'm sorry you are feeling discouraged and sad. I would strongly recommend pursuing this with as many doctors as it takes to find an answer. You deserve to know what is happening with your health. You deserve some relief. I hope that you also consider speaking with your husband. His support could be invaluable to you during this difficult time. Please take care. I hope you feel better.

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I guess my soul is bad, since my saying has always been.

""If the eyes are the portal to the soul...Look into my eyes and search my soul over..""

" crying"

Eyes are important thing to me. I believe that the eyes hold the secrets to soul and etc. If some thing is wrong with my eye, maybe there is some thing very wrong with me.

Edited by concrete_angel
just upset....
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Hi Angel, Im sorry to hear this about you, but I suspected something like this when you original posted. My mother has MS. When she was younger she went blind for awhile in one eye, but vision came back, but to this day she does get double vision whe fatigued. She has had MS most of her life, all of my life. She is going to be 70 this year. Her MS has progressed but she is still a wonderful caring person she always was. She continued to work as a elementary school secretary clear up to 30 years!

If it is truly MS, and there are many forms of it and is different for everyone, there are medications now that are available to slow the progression down, they weren't when my mom was diagnosed. There is so much research being done on MS, that they are always coming up with something new. Take care of yourself as best as you can...I will thinking of you often.

Shannon

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Hi Angel. I don't have any brilliant words of advice to give to you other than to try not to think about the worst case scenario when all the facts are still not in. I know that's a hard thing to do.

By the way, Concrete Angel is one of my all time favourite bands, the most beautifully raw haunting vocals that I have ever heard.

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Guest ASchwartz

Hi Concrete Angel,

It seems like you are getting conflicting information between your eye doctor and your doctor and the doctors you work for, except that your medical doctor and those you work for are more in agreement with each other. Do I have this right, because I'm not sure?

Anyway, its a scary situation for you and depressing. I agree that you should talk to your husband about this and as much as possible. That way you might feel less alone. Also, keep telling us what is happening with you because we will be and are very supportive. I know our hearts go out to you.

Also, there is one thing I've learned in life and its that very often it take time to get at the bottom of what is happening to us medically. Doctors can be very hasty to make diagnoses, scare people and they turn out to be wrong. It doesn't happen all the time, but it does happen. I know this might not make it less scary for you but there is always hope and hope is always important. Many years ago the GYN doctor thought my wife had cancer cells when he did a pap smear. The two of us were really scared and it was the weekend. Tests were done before the weekend but we had to wait anyway. Well, finally, when Monday came around we learned that her cells were normal. Thirty years later we're still OK. So, I know its hard but try to be as calm as possible and keep telling yourself that they really don't know as yet. Also, there are very good treatments for these things. All of us, in our panic, start to think the worst and we scare ourselves more than necessay. Of course, you never know, but that's true either way.

Also, if I was you, I would tell these doctors just how scared you feel. That also can help.

We're here for you so, hang in there and keep your hope going.

Allan

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Angel, I have to agree with Allan. Make sure that your doctors are communicating with you and each other, its your body and you have a right to know whats going on and to ask questions. My mom had symptoms of MS for many years before her doctors were able to confirm it. It is a very elusive diasease, cause it is different for each person.

Shannon

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