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What am I having?
Sat, 12/11/2004 - 21:36First off I thank you for taking the time to read this. For 4 years now I have been having what I call "eye attacks". They at first started with no pain at all, but have since grew into an intense experience. Then I developed the gran mal seizures, but they have since been controlled by .5mg of Clonazepam taken at night before bed. I first went to an eye doctor and after a few tests including an orbits scan I was given a clean bill of health. I am now seeing a neuroligist that my local hospital uses. I dont like this man though. He is very hard to understand and I have to repeat myself over and over again each time I see him. I have had an EEG and blood work done both came back clean and fine. These "attacks" happen 4-12 times a day and last between 30-90 seconds. Here is what happens during the attack. 1 I feel a tingling in my eyes and head then in 5-10seconds later I have one. 2 I drop to my knees because if I dont I spin in a circle and can fall over. 3 My eyes feel like they are rolling into the back of my head or popping out. 4 I can hear and sense everything around me during this time as my hands come up to my face and I shake for the duration. 5 In rare occasions I have lost bladder control, but it is very rare. 6 I dont breathe during these and when they are over I breathe very deeply like coming up for air. I used to have these every time I closed my eyes for longer than 2 minutes and when I woke up each morning. I now take 2 pills of Lamictal at 25mg and those have stopped, but the others I have during the day seem more intense. Some things that cause the attacks I have found are; high stress situation, quick flickering lights from sun glaring and long tv flickering, and then just out of the blue when not stressed just talking situations. So to recap I take 1 pill of Clonazepam .5mg and 2 pills of 25mg Lamictal each night before bed and all tests taken have been clean. What am I having? Do any of you have these types of attacks? Is the Lamictal worth it? My doctor is so unsure of everthying and only thing told me during last appointment was take another 25mg pill of Lamictal. I am looking for a new doctor but would like to go in knowing others know what I am having and any advice I can get. Thank you so much.
Comments
RE: What am I having?
Submitted by LeeMc on Tue, 2004-12-07 - 11:56
Asteric,
I read your post to find out just what kind of "eye attacks" you were experiencing. I can't say that I have experienced anything similar but then I do not know or remember what any of my seizures are like or what I do. I have to rely on the information provided by others. I think you have one up on me in that you can discribe to the doctor what is happening to you. That has to be better then second hand and observer accounts!
I have begun to have flickering sensations in one eye. Usually the left eye. It is like there are flash bulbs going off behind it (not in it but behind). They only last a few seconds but they are increasing in frequency. They don't affect my vision because they don't seem to be taking place in my eye but I can see the flashes like you would see a camera flash going off beside you.
I have also begun to have a sensation similar to the vibration from my cell-phone that occurs in the groin area on one side.....I suspected that was digestion related until I felt the same sensation on the bottom of my foot the other day.
My seizures have been under control for over 30 years now but I have entered menopause (hormonal changes are a challenge too) and my life in general has slowed down some. I have begun to notice little things like this and wonder if they were always there and I didn't notice them or if they are new manifestations. At any rate I am searching for a new neuro and a facility to have a complete reassesment done. My primary care doc is working with me on this.
Don't mess around trying to cope with something that isn't working for you and that you are not comfortable with. Your life and well-being are too important for that. Interview new neuros - and I mean it that way. Don't go in and ask them what they can do for you - tell them what you need to have from them and see if they are willing to work with you. If not move on to the next interview! Too many neuros just treat symptoms and are not interested in finding causes and treating them.........find one that is as curious to find out "why" as you are to have it controlled.
Tip - make a list of questions. Docs can be intimidating and sometimes we let them intimidate us even though we don't want to. They may come across as the person who knows a lot but do they really? They do have a degree on that wall and a lot of years of study and practice invested - but you have lived it and that counts for a lot more!
It is that bedside manner that you want to look for. Do they listen? Do they ask you questions? Do they make you feel comfortable? Do they make you feel better about yourself? Do they give you hope? Do they make you feel like you can confide in them and that they do care? If all they do is rubber stamp you out of there with an opinion and a perscription........go somewhere else!
The one person who made the difference for me over 30 years ago was an intern that simply asked me to tell him what it felt like.............no one else had cared enough to ask me what it was like - they just told me what they thought was going on, took some tests and gave me meds....there was never anything personal there.
Wishing you the best.................Lee
Asteric,
I read your post to find out just what kind of "eye attacks" you were experiencing. I can't say that I have experienced anything similar but then I do not know or remember what any of my seizures are like or what I do. I have to rely on the information provided by others. I think you have one up on me in that you can discribe to the doctor what is happening to you. That has to be better then second hand and observer accounts!
I have begun to have flickering sensations in one eye. Usually the left eye. It is like there are flash bulbs going off behind it (not in it but behind). They only last a few seconds but they are increasing in frequency. They don't affect my vision because they don't seem to be taking place in my eye but I can see the flashes like you would see a camera flash going off beside you.
I have also begun to have a sensation similar to the vibration from my cell-phone that occurs in the groin area on one side.....I suspected that was digestion related until I felt the same sensation on the bottom of my foot the other day.
My seizures have been under control for over 30 years now but I have entered menopause (hormonal changes are a challenge too) and my life in general has slowed down some. I have begun to notice little things like this and wonder if they were always there and I didn't notice them or if they are new manifestations. At any rate I am searching for a new neuro and a facility to have a complete reassesment done. My primary care doc is working with me on this.
Don't mess around trying to cope with something that isn't working for you and that you are not comfortable with. Your life and well-being are too important for that. Interview new neuros - and I mean it that way. Don't go in and ask them what they can do for you - tell them what you need to have from them and see if they are willing to work with you. If not move on to the next interview! Too many neuros just treat symptoms and are not interested in finding causes and treating them.........find one that is as curious to find out "why" as you are to have it controlled.
Tip - make a list of questions. Docs can be intimidating and sometimes we let them intimidate us even though we don't want to. They may come across as the person who knows a lot but do they really? They do have a degree on that wall and a lot of years of study and practice invested - but you have lived it and that counts for a lot more!
It is that bedside manner that you want to look for. Do they listen? Do they ask you questions? Do they make you feel comfortable? Do they make you feel better about yourself? Do they give you hope? Do they make you feel like you can confide in them and that they do care? If all they do is rubber stamp you out of there with an opinion and a perscription........go somewhere else!
The one person who made the difference for me over 30 years ago was an intern that simply asked me to tell him what it felt like.............no one else had cared enough to ask me what it was like - they just told me what they thought was going on, took some tests and gave me meds....there was never anything personal there.
Wishing you the best.................Lee
RE: What am I having?
Submitted by seaglass415 on Sun, 2004-12-05 - 10:40
Asteric,
The attacks you are describing sound like some of the ones I have experienced though mine aren't normally as severe (although a few have been). I was diagnosed with left temporal partial simple seizures in September of this year. I had an abnormal EEG though and actually seized during the test. I am now taking Lamictal myself (still in the process of building up to a full dosage)after an allergic reaction to Tegretol and severe loss of balance on Dilantin. I am feeling better now than I have in years though still having sporatic seizures. In my eyes, the Lamictal is worth every cent. Before the EEG, the doctors I was seeing (a G.P. and and ENT) felt that my symptoms were related to an inner ear disorder. I had inner ear infections in the past that had caused dizzy spells, so this is the path they were following. I had a series of tests related to my ears and vestibular systems that showed damage to the nerve in my right ear. I had what I now believe to be a seizure during the VNG testing that sounds almost an exact duplicate of the attacks you are describing. The Dr. performing the test felt that my results were indicative of a deeper problem than the nerve damage.
With the negative EEG finding, perhaps the attacks you are experiencing are related to your vestibular system (balance mechanisms). At any rate, I would seriously consider finding a Dr. you are comfortable with. The one piece of advise I really want to give you is this; You have to take charge of your own medical care. If you don't trust your Dr., find another one. If you thing something doesn't sound right, ask questions. If you hear about or read about something that might help your situation, tell your Dr.. Any Dr. that knows you will research the drugs, read up on the treatment options and come to him/her with questions, will make sure that you are comfortable with the suggestions he /she makes concerning your care.
I don't want to sound preachy, but I know this to be true after years and years of working in the medical field. A good Dr. is always open to well-informed suggestions from the patient.
Good Luck getting a diagnosis.
seaglass415
Asteric,
The attacks you are describing sound like some of the ones I have experienced though mine aren't normally as severe (although a few have been). I was diagnosed with left temporal partial simple seizures in September of this year. I had an abnormal EEG though and actually seized during the test. I am now taking Lamictal myself (still in the process of building up to a full dosage)after an allergic reaction to Tegretol and severe loss of balance on Dilantin. I am feeling better now than I have in years though still having sporatic seizures. In my eyes, the Lamictal is worth every cent. Before the EEG, the doctors I was seeing (a G.P. and and ENT) felt that my symptoms were related to an inner ear disorder. I had inner ear infections in the past that had caused dizzy spells, so this is the path they were following. I had a series of tests related to my ears and vestibular systems that showed damage to the nerve in my right ear. I had what I now believe to be a seizure during the VNG testing that sounds almost an exact duplicate of the attacks you are describing. The Dr. performing the test felt that my results were indicative of a deeper problem than the nerve damage.
With the negative EEG finding, perhaps the attacks you are experiencing are related to your vestibular system (balance mechanisms). At any rate, I would seriously consider finding a Dr. you are comfortable with. The one piece of advise I really want to give you is this; You have to take charge of your own medical care. If you don't trust your Dr., find another one. If you thing something doesn't sound right, ask questions. If you hear about or read about something that might help your situation, tell your Dr.. Any Dr. that knows you will research the drugs, read up on the treatment options and come to him/her with questions, will make sure that you are comfortable with the suggestions he /she makes concerning your care.
I don't want to sound preachy, but I know this to be true after years and years of working in the medical field. A good Dr. is always open to well-informed suggestions from the patient.
Good Luck getting a diagnosis.
seaglass415