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Ok, so I am scared now.....


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I have been having issues for some time. Last night I decided it is time to face reality and make some phone calls to be seen by an opthamologist and a neurologist. I just called to make an appt for an eye exam and they wanted me to come in right away. Which is scaring me.

 

First of all, I have been having issues with my eyes for awhile. I personally think it is related to all the blows to my head the past nine years. I have issues with my eyes focusing and have for a couple of years now but the optho found nothing wrong, just a lot of "junk" behind my eyes due to all the concussions. (ice skating, thrown from horse, fall, llama head butt, walked into a board sticking out of a ladder, horse head slamming into mine. These are my concussions of the last several years and why I do NOTHING which coukd risk another now). Today my left eye isn't focusing again, but I told dd to get the dogs inside because it was raining quite hard. Both girls :confused: and told me it wasn't raining. I told them to go to the front of the house to see if the cement was wet. No. We looked at the pool. Water like a mirror. It still looks like it is raining to me.

 

What I haven't told anyone is that I have had other issues for a couple of years now. I wake up and I literally feel my brain shaking inside. I took my younger son to DC two summers ago and told him I could feel a train coming (we were in a subway station) and my son felt bad and said the ground was still. No train came. Also, I believe I'm having Hypnagogic hallucinations, or I fear it could be Lewy Body Dementia. I wake out of a sound sleep, sit up and wait for all I'm seeing to slowly fade away. They are either geometric shapes with wiggly moving squiggly lines through them or just a moving mass of squiggly spaghetti lines wiggling all around. They are everywhere, it is not just a few. They used to terrify me but I am becoming more used to them now. I also swear I am seeing something crawl up a wall or move in my side vision. I look quickly but nothing is there. I had this checked years ago and nothing was found.

 

I am terrified. I have said nothing to my family but am making my appts. My mom was diagnosed with moderate Lewy Body Dementia at age 63 and was dead by 68. Often times the beginning symptoms are hallucinating.

 

Part of the reason I've waited so long is because 1) doctors never find anything wrong with me and 2) more than one doc treated me like I was a worthless housewife not worth the time of day. I just don't want to go through either right now. I also fear I will break down, making me seem like I'm crazy or have psychological issues. I am really afraid of LBD. I would rather not live at all than to go like that.

 

Please pray and send good thoughts. I want ANSWERS this time because it has gone on for too long now.

 

Eta: i am not being seen today because we have a oacked day ahead of us.

Edited by Denisemomof4
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Do you have a ton of "floaters" in your eyes? What you describe seeing sounds exactly like that to me. Do you think maybe your opthal wants you in because lots of floaties can foretell a detached retina? (want to add a hug but I can't do that in edit mode..)

 

I have complained about floaters for many years now and nothing has been detected. I was even sent to some specialty center for my eyes after one of my concussions, but I don't remember why. I just know they found nothing wrong.

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This sounds very similar to the non epileptic seizure activity my DH has. He has had several bad blows to the head, the worst of which was getting hit by a car and landing on his head many feet away. Combined with lots of small blows from working a job where he tends to get punched.

 

 

We have had him tested by several neurologists, and had tests and scans in the ER a couple of times. There is no epileptic activity and no visible lesions on the brain.

 

He takes a low maintenance dose of Dilantin, lots of fish oil, and tries to get plenty of sleep and eat well.

 

He has very very few actual full blown seizures, it is mainly the crazy making visual distortions, auditory stuff, and what he calls weird head days. Those are greatly lessened with the low dose meds though.

 

I know that is really all that helpful, but it just sounded so similar I wanted to share.

 

:grouphug: :grouphug: :grouphug:

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:grouphug: Praying for you.

 

 

I don't know if this is the same thing, but I see squiggly lines (vertical wavy lines) sometimes. It didn't happen all the time, but often enough that it really scared me. I finally went to the opthamologist and discovered I was experiencing ocular migraines.

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:grouphug: Praying for you.

 

 

I don't know if this is the same thing, but I see squiggly lines (vertical wavy lines) sometimes. It didn't happen all the time, but often enough that it really scared me. I finally went to the opthamologist and discovered I was experiencing ocular migraines.

Oh, I get those. They are stress related. If I meditate/do deep breathing they go away.

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I second seeing a neurologist. As someone with seizures, most of which I have while conscious and no one can tell I am having them, the things you are describing could certainly be symptoms of certain types of seizures, especially considering your history of head injuries. I spoke with a number of different professionals about my symptoms before someone was able to diagnose what it actually was. Panic attacks were ruled out among other things. So you really need to see a neurologist to get that possibility diagnosed or ruled out.

 

Hugs!

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This sounds very similar to the non epileptic seizure activity my DH has. He has had several bad blows to the head, the worst of which was getting hit by a car and landing on his head many feet away. Combined with lots of small blows from working a job where he tends to get punched.

 

 

We have had him tested by several neurologists, and had tests and scans in the ER a couple of times. There is no epileptic activity and no visible lesions on the brain.

 

He takes a low maintenance dose of Dilantin, lots of fish oil, and tries to get plenty of sleep and eat well.

 

He has very very few actual full blown seizures, it is mainly the crazy making visual distortions, auditory stuff, and what he calls weird head days. Those are greatly lessened with the low dose meds though.

 

I know that is really all that helpful, but it just sounded so similar I wanted to share.

 

:grouphug: :grouphug: :grouphug:

 

 

actually, this makes a lot of sense. I have other symptoms that also sound like it xould be a sort of seizure activity, spacey feelimg like drugged up and not blood augar relAted dizziness, days where I wake up out of it and stay out of it all day as if in a daze.... Scans normal so I am sent on my way.

 

 

Last summer I ran into a board, huge knot on my head and hearing off ever since. Not only do o hear things but now sounds which come from the right aound like they come from the left and vice versa.

 

Can you share more symptoms your dh has?

 

I cleared this pm for optho. You all are right.

 

 

Forgive typos...sent from phone Nd hard to xheck

 

Can you share more of your dh

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I was going to send you a PM this morning, because you have been on my mind and heart. Yeah, I guess I am a stalker of Denise! When you said, you had Heather for a therapist for your kidlet, my heart just filled with happy (and a bit covetous).

 

I just want to tell you that this stranger is one who prays and believes (I broke my neck and God healed it) in healing.

 

I will and have been praying for you.

 

I know there are many others on this board you may never meet and may never come forward to tell you how you have touched our lives with your experiences and open heart to share them for us. ♥

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Eye things are scary.

 

Some years back DH swore he was having dizzy spells all the time. It actually led to some depression.

 

We have an amazing eye doctor. I had been on DH for years to go see him. My dad is practically blind and he corrected his vision like no one ever had before. He handles the entire SWAT team....so yeah he has a good rep.

 

When DH finally ditched his old doc and started seeing him, he detected the slightest imbalance and he has some prism thing in his glasses now. Turns out it is not all the time, and he does not even detect it every visit. I guess it's some sort of thing where his one eye is not totally centered but it's nothing you could notice on your own.

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actually, this makes a lot of sense. I have other symptoms that also sound like it xould be a sort of seizure activity, spacey feelimg like drugged up and not blood augar relAted dizziness, days where I wake up out of it and stay out of it all day as if in a daze.... Scans normal so I am sent on my way.

 

 

Last summer I ran into a board, huge knot on my head and hearing off ever since. Not only do o hear things but now sounds which come from the right aound like they come from the left and vice versa.

 

Can you share more symptoms your dh has?

 

I cleared this pm for optho. You all are right.

 

 

Forgive typos...sent from phone Nd hard to xheck

 

Can you share more of your dh

 

I just want to add that all of the scans they have run on me do not show any reason for a seizure, but I still have them. I get the deja vu feeling (which I thought might be a panic attack), but prior to that I just get odd feelings with no explanation, like high blood sugar but no reason for feeling that way because I haven't eaten a stack of junk. I'll feel like I'm not quite all there. Hard to explain. But the types of things you're describing are very much in line with things I've heard about seizures, and there are many, many types of seizures.

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Eye examine was fine. Doctor wants me to see a neurologist because he does believe my vision issues are related to my TBI and he wants me to be at peace about LBD.

 

What I was seeing today was the collapsed vitreous gel floating around my eyes. I had COMPLETELY forgot that when I hit my head one of the times it caused the gel in my eyes to collapse. the reason he wanted me to be seen immediately is because sometimes the retina can tear or detatch. Mine was fine. He said when he sees the vitreous gel it looks like a wrinkled ball of saran wrap, which could look like rain falling for me.

 

He did say my symptoms are very irregular and that he wants me to be followed by a neurologist, so that will be my next appt. He said it could be migraines but it sounds very different. :confused:

 

I am feeling pretty confident this is related to TBI and I need to find a specialist. I guess good luck with that one as I've been trying for my son and myself for 9 years now.

 

thanks so much everyone!

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I have been having issues for some time. Last night I decided it is time to face reality and make some phone calls to be seen by an opthamologist and a neurologist. I just called to make an appt for an eye exam and they wanted me to come in right away. Which is scaring me.

 

First of all, I have been having issues with my eyes for awhile. I personally think it is related to all the blows to my head the past nine years. I have issues with my eyes focusing and have for a couple of years now but the optho found nothing wrong, just a lot of "junk" behind my eyes due to all the concussions. (ice skating, thrown from horse, fall, llama head butt, walked into a board sticking out of a ladder, horse head slamming into mine. These are my concussions of the last several years and why I do NOTHING which coukd risk another now). Today my left eye isn't focusing again, but I told dd to get the dogs inside because it was raining quite hard. Both girls :confused: and told me it wasn't raining. I told them to go to the front of the house to see if the cement was wet. No. We looked at the pool. Water like a mirror. It still looks like it is raining to me.

 

What I haven't told anyone is that I have had other issues for a couple of years now. I wake up and I literally feel my brain shaking inside. I took my younger son to DC two summers ago and told him I could feel a train coming (we were in a subway station) and my son felt bad and said the ground was still. No train came. Also, I believe I'm having Hypnagogic hallucinations, or I fear it could be Lewy Body Dementia. I wake out of a sound sleep, sit up and wait for all I'm seeing to slowly fade away. They are either geometric shapes with wiggly moving squiggly lines through them or just a moving mass of squiggly spaghetti lines wiggling all around. They are everywhere, it is not just a few. They used to terrify me but I am becoming more used to them now. I also swear I am seeing something crawl up a wall or move in my side vision. I look quickly but nothing is there. I had this checked years ago and nothing was found.

 

I am terrified. I have said nothing to my family but am making my appts. My mom was diagnosed with moderate Lewy Body Dementia at age 63 and was dead by 68. Often times the beginning symptoms are hallucinating.

 

Part of the reason I've waited so long is because 1) doctors never find anything wrong with me and 2) more than one doc treated me like I was a worthless housewife not worth the time of day. I just don't want to go through either right now. I also fear I will break down, making me seem like I'm crazy or have psychological issues. I am really afraid of LBD. I would rather not live at all than to go like that.

 

Please pray and send good thoughts. I want ANSWERS this time because it has gone on for too long now.

 

Eta: i am not being seen today because we have a oacked day ahead of us.

 

Wow, this sounds terrible. Did someone evaluate you after you had these blows to the head.

 

What you are describing almost sounds as if you are poisoned somehow? Have you been tested for toxins/metals...?

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I was going to send you a PM this morning, because you have been on my mind and heart. Yeah, I guess I am a stalker of Denise! When you said, you had Heather for a therapist for your kidlet, my heart just filled with happy (and a bit covetous).

 

I just want to tell you that this stranger is one who prays and believes (I broke my neck and God healed it) in healing.

 

I will and have been praying for you.

 

I know there are many others on this board you may never meet and may never come forward to tell you how you have touched our lives with your experiences and open heart to share them for us. ♥

 

I am so glad your neck has been healed!!!!!

 

Words can't express how much I appreciate everyone I have spoken to here, through PM's, emails and phone calls, and I can't thank you all enough for your prayers!!! :grouphug::grouphug::grouphug::grouphug:

 

Now I need to get my dialated pupils out the door!

 

Oh, a quick funny. Dd9 asked today why they were dialating my puberty.:lol::lol::lol::lol:

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Oh, and Chris, I definitely have floaters, but I also definitely have these hallucinations. The first one I attributed to melatonin but now I realize it was never that at all. Or at least I think.....

 

Given the head injuries (all concussions are head injuries!), it might be a good idea to have a neuropsychological evaluation in addition to an optho exam.

 

Hugs,

 

Lisa

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Wow, this sounds terrible. Did someone evaluate you after you had these blows to the head.

 

What you are describing almost sounds as if you are poisoned somehow? Have you been tested for toxins/metals...?

 

Evaluated after the more severe injuries. I couldn't talk for months, I couldn't read for 10 months and understand what I read, but scans were ok so they sent me along.

 

Do you know who would test for toxins? an endocrinologist?

 

Given the head injuries (all concussions are head injuries!), it might be a good idea to have a neuropsychological evaluation in addition to an optho exam.

 

Hugs,

 

Lisa

 

I spent a day doing neuropsyche after my life changinging "mild concussion" and was told I was average but likey higher functioning before concussion. :glare: this is why I rarely go to doctors. I was a mess for years and will never be the same. LIKELY higher functioning?

 

I spoke at length to someone who nearly died due to a head injury and spent months living in a facility. I don't know what else can be done.

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I second seeing a neurologist. As someone with seizures, most of which I have while conscious and no one can tell I am having them, the things you are describing could certainly be symptoms of certain types of seizures, especially considering your history of head injuries. I spoke with a number of different professionals about my symptoms before someone was able to diagnose what it actually was. Panic attacks were ruled out among other things. So you really need to see a neurologist to get that possibility diagnosed or ruled out.

 

Hugs!

 

I just want to add that all of the scans they have run on me do not show any reason for a seizure, but I still have them. I get the deja vu feeling (which I thought might be a panic attack), but prior to that I just get odd feelings with no explanation, like high blood sugar but no reason for feeling that way because I haven't eaten a stack of junk. I'll feel like I'm not quite all there. Hard to explain. But the types of things you're describing are very much in line with things I've heard about seizures, and there are many, many types of seizures.

 

Would you mind sharing here or in a PM what you are diagnosed with? Have you suffered TBI?

 

I know what you are saying because it also explains what happens to me sometimes. Do you ever feel your brain shake inside your head?

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Eye examine was fine. Doctor wants me to see a neurologist because he does believe my vision issues are related to my TBI and he wants me to be at peace about LBD.

 

What I was seeing today was the collapsed vitreous gel floating around my eyes. I had COMPLETELY forgot that when I hit my head one of the times it caused the gel in my eyes to collapse. the reason he wanted me to be seen immediately is because sometimes the retina can tear or detatch. Mine was fine. He said when he sees the vitreous gel it looks like a wrinkled ball of saran wrap, which could look like rain falling for me. AHA! So I was sorta right. :D

 

 

He did say my symptoms are very irregular and that he wants me to be followed by a neurologist, so that will be my next appt. He said it could be migraines but it sounds very different. :confused: I am so glad you are going to a neurologist!

 

I am feeling pretty confident this is related to TBI and I need to find a specialist. I guess good luck with that one as I've been trying for my son and myself for 9 years now.

 

thanks so much everyone!

 

I sincerely wish the best for you and will pray for a clear diagnosis and wisdom for your doctor! Tons of hugs for you. :grouphug::grouphug:

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:grouphug::grouphug::grouphug:

 

I'll be praying for you, Denise -- I know it's hard not to fear the worst, considering what happened to your mom, but please try to remember that you're not your mom, and you're probably going to be just fine.

 

Is your dh going to the appointment with you? It would be best if you had someone there to support you, and to make sure the doctor takes you seriously. It's also helpful to make a list of all of your symptoms, so you won't forget to mention anything while you're there.

 

Please update us when you can.

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actually, this makes a lot of sense. I have other symptoms that also sound like it xould be a sort of seizure activity, spacey feelimg like drugged up and not blood augar relAted dizziness, days where I wake up out of it and stay out of it all day as if in a daze.... Scans normal so I am sent on my way.

 

 

Last summer I ran into a board, huge knot on my head and hearing off ever since. Not only do o hear things but now sounds which come from the right aound like they come from the left and vice versa.

 

Can you share more symptoms your dh has?

 

I cleared this pm for optho. You all are right.

 

 

Forgive typos...sent from phone Nd hard to xheck

 

Can you share more of your dh

 

It all started at a time when his stress was off the charts, he had just lost both parents within 4 months, and the doctor over medicated him after a single panic attack (dh thought it was his heart never having had one) rather than send him for good grief counseling.

My theory is that the blows to the head, the super stress, then a mix of psychoactive meds finally pushed his poor brain over the edge.

It started with occular migraine like visuals, and weird auditory stuff.

hen progressed to feeling confused, just being pretty out of it, and some really out of character stuff like zero interest in TeA time with me, and finding extra meaning in random stuff. Also lots of physical pain with no known cause.

 

I felt at the time he was overly medicated, but I also couldn't fathom how much he must have been grieving so I was kind of floundering as to what to do.

 

Finally he had a full blown seizure at work, his co worker found him passed out on the floor of the office. Thankfully this company had cameras in their Loss Prevention office so we were able to figure out what happened.

 

It was a long week recovery after that first worst seizure. He had another less intense one about 2 weeks later. Of course he hit his head both times!

It took 2 er visits, me yelling at our GP, and finally a really good neuro to get someone to come to their senses about his meds.

 

At that point he really couldn't make any decisions so I went into bulldog mode.

 

Finally after one scary episode with keppra and and Ambien, we got him on the low maintenance dose of Dilantin only. My normal sane husband came back and he was able to process and heal.

 

Through the last 4 years his symptoms have been really pretty mild, mostly weird leg twitch in, that is not restless legs. Trouble with dizziness and a loopy feeling from time to time, and migraine type symptoms with headache and occular stuff. But he is totally conscious enough to know its a migraine, doesn't feel he is "seeing things"

 

I asked him just now for a better description of his "weird head days" He said it was like watching a movie, like everything was really happening but he was separated from it. Almost disassociative but he was totally aware of how weird he felt and just wanted to sleep it off.

 

It has been 5 years since this all started, he had one bad seizure in my parents front yard, where my mom found him and called an ambulance, which took several days to recover from. Otherwise it is all minor, and when the leg twitching and migraine symptoms get worse he can increase his meds for a week or so until his brain calms back down.

 

It really felt like I was loosing him at first, but honestly it is a totally minor issue day to day now. Meds have helped tremendously!

 

ETA: he also said sometimes his eyes twitch, not the lid, but his actual eyeball, he used to get lightening flashes in his vision, and stumble over words, not being able to recall the right word. Also executive function stuff. All of that has been improving over time since getting hit by the car.

Also I'm not anti medication....the doctor just had him on way too much that all affected seratonin levels and I firmly he was likely on the edge of full blown seratonin syndrome. The doctor blew off all my concerns, saying he was just depressed.

Edited by jeninok
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A few years ago I was having some neurological issues and associated vision issues. I saw a neurologist, but she also referred me to a neuro-ophthamologist where they did additional tests that a standard ophthalmologist would not have the equipment or experience to do. I would hope that with your symptoms, your neurologist will decide to do the same.

 

:grouphug::grouphug::grouphug:

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