Re: Objects moving in my vision, can't take it anymore!!!!
hey violet! i was just wondering...is it an endocrinologist that you see for the hormonal testing. i brought it up to my ob/gyn and she just kinda thought it wouldn't cause my problems blah blah blah. i hope you get some answers!!
RICH>>>>> hey, have you ever read about superior oblique myokmia? does this sound like anything that could be a possibility for us?
Last edited by alexiwildchild; 09-18-2008 at 10:36 PM.
Re: Objects moving in my vision, can't take it anymore!!!!
Quote:
Originally Posted by krahon
I don't doubt there diagnosis, I doubt THE diagnosis, as MAV is a kind of, "if we rule out inner ear then its MAV"
I don't really understand why people feel this way. If instead of calling it migraine associated vertigo, we called it 'chronic dizziness syndrome' would that make it any different? It's still the same underlying disorder, it just seems that people think 'Im suffering too much for this to possibly be migraine', and worse still they still think of migraine as a periodic headache. Migraine is a disease - you don't have "a migraine" when you have a headache. You have migraine as an individual - and you have episodes of migraine. For some that episode may be continuous.
Treatment is not that difficult to attempt, but some seem resistant to it while they wait to find out they have some horrific neurological disorder that vindicates the way they have been feeling. It never happens.
Migraine is a pervasive disorder and a huge battle. The weapons are there to fight it but its very common that sufferers (and their doctors) won't initiate and stick to a proper medication trial. The meds really do work.
Re: Objects moving in my vision, can't take it anymore!!!!
Hi, Alexi--
Yes, that is what an endocrinologist is. I have no idea if it will be helpful or not, but I do just want to see if anything is amiss with the hormones, thyroid and adrenal glands, etc. I'm sure something set all of this off, and it may be hormone-related. I was under severe emotional stress for about a year and a half before my dizzies started...then I had some physical issues and then this started. I think it is worth investigating...it's just a few blood tests. I'll keep you posted if I learn anything--I think it will be three weeks before I get results back. Note: most ob/gyns don't seem to know much about hormones. If you're interested in looking into it, call an endocrinologist or search for someone near you who uses bioidentical hormones.
Re: Objects moving in my vision, can't take it anymore!!!!
I think it does take an adjustment period for some of us to understand what migraine is and/or that we actually have that, as many of us have had few headaches, etc. etc. It's a learning process. Even many docs who treat migraine don't really seem to get the disabling effects of it.
Trialing meds may be necessary, but it is more difficult for some people than others. For those who are already dealing with severe depression or other mood changes with this illness, trying meds that either increase our symptoms or cause new psychological or physical issues is not only hard but also potentially dangerous. Those of us who are primary caregivers already find it hard to care for our children; we can't afford to be further incapacitated. Others may want to have children and so cannot be on the meds, which by and large are contraindicated during pregnancy.
So, it's complicated. But of course we want the med that works for us, so I'm sure we'll keep trying. In the meantime, it's good to know that others have found the right med combo and are doing so much better.
Re: Objects moving in my vision, can't take it anymore!!!!
One more thing about this is that b/c of the managed care system of health care docs spend about 3 to 9 minutes with each patient. This is not enough time to cover symptoms, consider possibilities, and educate the patient. What this means is that many of us have a lot of unanswered questions and others of us do not feel that every angle has been considered. Unfortunately, it is left up to the patient to rule out various disorders (by proactively seeing different docs) and get diagnosed properly.
Everything I have learned about migraine and inner ear disorders has been from my own online research, and I imagine this is the case for many. It is no wonder that so few people have a grasp of the nature of these illnesses or that so many people still don't know what's wrong with them after years of dizziness.
Just more reasons why I am so thankful for this board!!!
Re: Objects moving in my vision, can't take it anymore!!!!
TO ADM'S POST
Its not that at all, I believe the whole migraine aspect of it, but there are other things that can cause similar symptoms, pinches in the neck, accutane (intercranial preasure) and even sinus infections that have gone on a long time without helping them, as well as some major vitamin and mineral deficiences, thats all.
What I mean is this, don't call it something and have people believe that it the only dx it can be, in some cases it is the only thing it can be as a dx but in others not all possibilities might have been checked. They said I had post concusive syndrome 15 years ago, so thats what I thought I had, now they say its MAV, but until I get everything tested twice (or more) I feel like some of us may have something else causing the migraines/vascular problems etc. I also found out that having undetected ASD's (which my daughter and my dad had (holes in the heart) can cause a myriad of similar issues because of decreased blood flow to the brain, and alot of these go undetected if small enough. I have NEVER had an EKG or an imaging of my heart so I can't rule that out.
Thats all adm...
Last edited by krahon; 09-19-2008 at 08:08 PM.
Reason: typos
Re: Objects moving in my vision, can't take it anymore!!!!
Quote:
Originally Posted by krahon
TO ADM"S POST
Its not that at all, I believe the whole migraine aspect of it, but there are other things that can cause similar symptoms, pinches in the neck, accutane (intercranial preasure) and even sinus infections that have gone on a long time without helping them, as well as some major vitamin and mineral deficiences, thats all.
What I mean is this, don't call it something and have people believe that is the only thingit can be, in some cases it is the only thing it can be as a dx but in others not all possibilities might have been checked, they said I had post concusive syndrome 15 years ago, so thats what I thought i had, now they say its MAV, but until I get every thing tested twice (or more) I feel like some of us may have something else causing the migraines/vascular problems etc. I also found out that having undetected ASD's (which my daughter and my dad had (holes in the heart) can cause a meriad of similar issues becase of decreased blood flow to the brain, and alot of these go undetected if small enough. I have NEVER had an EKG or an imaging of my heart so I can't rule that out.
Thats all adam...
that is so weird you mention the EKG and heart issues. i just had an abnormal EKG cuz i was having flutters, fast heart rate when just sedentary, and chest pains. so i am now sporting a heart event monitor and then off to the cardiologist. not saying there will be anything there, but hey, it's worth a try to at least rule more things out. i completely understand where you're coming from.
Re: Objects moving in my vision, can't take it anymore!!!!
Thanks Alexi,
I read some of your posts, your in a world of hurt as well, sorry
My only true hope is that we all have to start thinking outside the box because WE are the ones who will solve this, I know a lot of us already have, and its hard to keep going, but I look at my daughters face every day and I say to myself in silence: "One day I WILL be the Dad you deserve.........."
Re: Objects moving in my vision, can't take it anymore!!!!
Quote:
Originally Posted by krahon
Thanks Alexi,
I read some of your posts, your in a world of hurt as well, sorry
My only true hope is that we all have to start thinking outside the box because WE are the ones who will solve this, I know a lot of us already have, and its hard to keep going, but I look at my daughters face every day and I say to myself in silence: "One day I WILL be the Dad you deserve.........."
It sounds like maybe outside the box might be holistic. Not somebody that just dabbles in it.. but an M.D. that specializes in it. I remember when my dad had Meniere's disease and was at his wits end. A holistic M.D. told him to take a variety of B vitamins and within a week he had it licked. Also look into an M.D. or someone highly trained in Homeopathy.
Re: Objects moving in my vision, can't take it anymore!!!!
Quote:
Originally Posted by krahon
Thanks Alexi,
I read some of your posts, your in a world of hurt as well, sorry
My only true hope is that we all have to start thinking outside the box because WE are the ones who will solve this, I know a lot of us already have, and its hard to keep going, but I look at my daughters face every day and I say to myself in silence: "One day I WILL be the Dad you deserve.........."
wow...you actually had me tearing up reading this. it's so emotionally disturbing to have this sort of thing destroying our everyday quality of life. it's horrible. i am here for you, as i know you are having a rough time. i think as long as you are there for your daughter, and she knows you love her, that's all she needs right now. just give the love you have to give. you are the dad she deserves, but it's just a different form right now. you will get back where you need to be. i believe that for all of us...as hard as it is...and not every day do i think that.
i am trying all means necessary to make sure i know 100% what is ruled out and not just left in a default category of an illness. hang in there.
Re: Objects moving in my vision, can't take it anymore!!!!
Thanks Alexi and Cathy
Thanks for your support Alexi, I am here for you too I owe it to my little girl to just keep trying, anything and everything...
And Cathy, how long did your dad have these symptoms, what dosages of B complex or B vitamins did he use to ultimately help him, how long did it takr for him to see some results, and did all of his symtoms go away? Or did they just get a lot better, either way thats good news
Thanks guys (or..umm.. girls) , keep thinking, its up to us to do all the homework
Re: Objects moving in my vision, can't take it anymore!!!!
Quote:
Originally Posted by krahon
Thanks Alexi and Cathy
Thanks for your support Alexi, I am here for you too I owe it to my little girl to just keep trying, anything and everything...
And Cathy, how long did your dad have these symptoms, what dosages of B complex or B vitamins did he use to ultimately help him, how long did it takr for him to see some results, and did all of his symtoms go away? Or did they just get a lot better, either way thats good news
Thanks guys (or..umm.. girls) , keep thinking, its up to us to do all the homework
Krahon
My dad had this over 25 years ago. His doctors offered nothing except for removing part of his inner ear which he wasn't going for. The Holistic Dr. put him on a B complex (100) and additionally supplemented specific B vitamins between 100-300 mg a day divided into 3 doses (not sure of the exact dose and what B vitamins they were ). There is information you can search for that talks about doseages on certain websites. My dad was symptom free within a week. He took the vitamins for over a year and then stopped. He has had only 1 or 2 mild cases of dizziness over the last 25 years. It was amazing how much it helped him and his hearing was restored almost to normal too.
Homeopathy is quite amazing. I had 2 experiences with it that were impressive. A bee sting that tripled the size of my thumb that responded to nothing except a homeopathic compound called "Apis" which took my thumb down literally before my eyes within 20 minutes. When I had salivary stones and blockages from them, a Dr. wanted to take the gland out (big surgery) and was put on another homeopathic remedy and I haven't had a problem with stones in over 20 years. It's pretty amazing stuff.
Re: Objects moving in my vision, can't take it anymore!!!!
Alexi, I looked up superior oblique myokymia and it seems plausible. It apparently can't be seen by the naked eye and has to be looked at under a microscope. I'm going to look into it.
