Tuesday, July 16, 2013
Bilateral Vestibular Hypofunction - Updates
Well, It's been a while. I didn't think anyone read my blog, but apparently others do because I've been contacted a few times.
I know usually my posts on here are updates, just like this one. I have been dealing a lot better with my migraines - They now only come close to my period and during. I had taken verapamil for about a year and after stopping it I was down to just the few migraines a month.
I started getting new symptoms however within a few months of stopping the med. The road ahead me, specifically on the interstate would appear to be bending downward. I also started feeling like I was sitting still, on one of those simulated ride where you are watching the screen move in front of you (like a roller coaster ride). Some call this depersonalization, but I know what DP is and this is not it. This is my brain getting confused with what my eyes are seeing, no doubt.
I went to a neurotologist for testing and had a VNG study done. The Caloric testing (tubes in the ears and hot and then cold air blown into the canal) revealed Bilateral vestibular hypofunction. A "rare" (getting used to these diagnoses) condition that causes damage to both inner ears resulting in balance issues. This is usually caused from certain antibiotics ending in cin, like Azythromyacin, which I took a lot of in my lifetime due to ear infections and other illnesses.
He said this was most likely causing the issues for me with driving. I also started noticing that when in coversation with people, certain head movements, primarilly up and down shaking in a "yes" head movement" I would get a quick zap of being offbalance. This too would be from the vestibular damage. Then there was also the case of while read something, say my computer screen, anything in my peripheral vision would start to shake a little, or bounce. This too is my vestibular system.
Anywho, long story short I had been doing VERT, Vestibular Rehab since January 2013. I feel a little better, not a whole lot, still have the same symptoms to a degree. I did the VNG study again yesterday and got the results today. I have regained back most of my balance, with the exception of my right ear still being bad, but it has improved as well!!!! Great news!! I am going to keep up with the VRT exercises to see if some of these annoying symptoms will go away. I want to enjoy road trips agan :)
On another note some other symptoms which seem to be migraine related have popped up. I do have visual snow, which I have talked about before on here... I am used to it now BTW, but this could be the contributing facot, maybe MAV which is vestibular migraine by the way (basilar migraine was my diagnosis). When I pass cross walks while driving (the ones with lines on them) the lines will appear to be moving to the right or the left. Also, cross walks made out of brick pavers will do the same. So anything with a type of pattern to it will move. Yippiee!!! I am also getting more sensitive to movement in my peripheral vision! I seem to be getting migraine symptoms without the pain too. I can always feel it in my eyes and neck. While at church viewing the big creen, once the camera starts panning left to right or if a pattern is flashing on the screen during the music playing, I will get izzy. My VRT specialist suggested getting one of those table top disco balls lights with all the different colors to see if exposing myself to this will help retrain as other therapists have suggested it to her. I am going to give it a shot :)
Now there is teh case of support... I have zero support outside of my Dr's office appointments. I attribute this to years of complaining, many diagnosis' and not getting better. My husband listens, but not really. I feel as though I have to throw in the word boobs, to get his attention. You can hear the buzzing in his brain after he lets me unload on him. Quite sad. I guess somewhere in my imaginative brain I figured my husband was the best man in the world who would give me support every time I needed it. FAIL! Unless I am crying or dying... I get zero!!! All I wanted from him today was to ask me how my Dr's appointment went. He told me he was busy and couldn't talk. I told my support board, but sometimes I feel like most would be envious for hearing of others good news, because they want it to be them. I dunno... I guess that sounds crazy. I am such a nurturing type that I just don't understand how my own husband could sit back and let me go through all of this on my own. If it were him who had these issues I would be spending every bit of free time researching and contacting people. Now I know I am a very strong headed person... a Driver if you would call it that, and maybe he feels if anyone can do it it's me... but the truth is, at the end of the day I am just as human as him.
I keep holding on to the dream and the vision that one day I will be back to normal. The old pain in the butt girl I was before all of this. The free spirited girl who had a dream to travel the world and see as much of it as she could. I can still feel it deep inside soul that this is going to happen. That is what keeps me going.
Wednesday, May 2, 2012
California Study - Completed
I haven't posted in a while. I guess it's time for an update.
I participated in the imaging study held by the famous Dr. Peter Goadsby in San Francisco. The most nerving part about the whole ordeal was the flight there and back. I don't like flying and was totally out of my element. My mother in-law went with me and I am VERY thankful for that!
Dr. Goadsby is a very brilliant man as well as the researcher he has in charge of the VS study, Dr. Christoph Schankin. I personally got to speak with both of them and I must say Dr. Goadsby seems very intrigued by the whole VS thing and seem confident in finding something, or at the least making a lot of noise so that other Dr's will study it as well.
I don't have any other news to put forth to this, other than that Dr. Schankin recently spoke about VS at a Neurology Board meeting in Louisiana recently. I am not sure what came about it at this point.
I recently fell ill with a stomach virus and have since been plagued by daily headaches/migraines. ( I hadn't had a migraine or a headache really in over a month.) I am hoping my medication doesn't need to be adjusted, but will do what is needed. I think it's been causing me to gain some weight lately and I DO NOT like that at all, especially since it's bikini season!!!!! :) I liked being able to eat what I wanted there for a while.... maybe it's because I am approaching 30.. could that be it?
Oh hey!!!! I have 1 follower now, and that is enough to make me want to celebrate! Hi Follower!!!!! :)
Enough of my senseless migraine induced rambling.... time to get back to work.
Thursday, February 23, 2012
California
I have been selected to go to California and participate in a brain imaging study for Visual Snow. A world renown neurologist is leading the study. I will be heading out next month and have not been looking forward to the flight. I really dislike flights. Hate may be a better word to use. I am not sure if I am more afraid of the flight or the tests.... either way I am scared crapless. Yes, I said crapless!! My mother in law is going with me, which is awesome! She is a great woman and I am lucky to have her in my life. She is flying all the way from Michigan just to fly with me to California for a few days. :)
Hopefully the brain imaging will give the Dr. an idea of what part of the brain is affected and also a next step in a line of possible recognition and one day treatment. I have always had an inkling that I was meant to do something big in this world, and getting Visual snow was not my idea of that something. Maybe doing the brain imaging for an illness that isn't widely known was it. At any cost it sucks..., my life that is. I try to rationalize why this happened to me and how things could be worse. And it's true, lots of things could be worse. But I can not justify why this happened to me. Why did the events surrounding the time line of when this happened to me, have to have happened.
Every area of my life has suffered a blow. I am a mother, yet I feel like I am not fit to raise a puppy, let alone a child. I go to work, but spend loads of time in la la land remembering better days in my past before VS. My own relationship is failing because A.) We have no family here who can watch our son long enough to give us a break, and B.) I have a hard time with expression of feeling and my husband thinks I don't appreciate him. He says I worry too much about my disorder and that 3 years is long enough to get over it. Boy, isn't he lucky I wasn't diagnosed with a rare disorder that has no cure? Oh wait.... I was.... Oh well, I should be able to get over it in no time.
You know, I don't think anyone owes me anything. But the least they can do is let me get on the way I know best. If I am up and walking around.... then hallelujah. My world has been full of knock me downs for 3 years now. I am making the best of it and if YOU are taking it personal....don't flatter yourself. I would trade places ANY DAY!!!
Hopefully the brain imaging will give the Dr. an idea of what part of the brain is affected and also a next step in a line of possible recognition and one day treatment. I have always had an inkling that I was meant to do something big in this world, and getting Visual snow was not my idea of that something. Maybe doing the brain imaging for an illness that isn't widely known was it. At any cost it sucks..., my life that is. I try to rationalize why this happened to me and how things could be worse. And it's true, lots of things could be worse. But I can not justify why this happened to me. Why did the events surrounding the time line of when this happened to me, have to have happened.
Every area of my life has suffered a blow. I am a mother, yet I feel like I am not fit to raise a puppy, let alone a child. I go to work, but spend loads of time in la la land remembering better days in my past before VS. My own relationship is failing because A.) We have no family here who can watch our son long enough to give us a break, and B.) I have a hard time with expression of feeling and my husband thinks I don't appreciate him. He says I worry too much about my disorder and that 3 years is long enough to get over it. Boy, isn't he lucky I wasn't diagnosed with a rare disorder that has no cure? Oh wait.... I was.... Oh well, I should be able to get over it in no time.
You know, I don't think anyone owes me anything. But the least they can do is let me get on the way I know best. If I am up and walking around.... then hallelujah. My world has been full of knock me downs for 3 years now. I am making the best of it and if YOU are taking it personal....don't flatter yourself. I would trade places ANY DAY!!!
Saturday, December 10, 2011
Prozac, visual snow, migraines and Verapamil
I thought I would make this a post about multiple topics as they are all related.
Firstly I am starting to accept what may have happened to me. My vision and mental issues did start after I had stopped taking Prozac. Is that a coincidence? I am not sure. I have found plenty of people with thyroid disorder, like myself, who have the same issue. Some who have never taken an antidepressant before. So the term is called persistent perception disorder. For those who got it taking a hallucinogenic type drug, you would add that term in front of the other words. I however was taking Prozac so it gets a shorter name. Weird huh? So from what one Dr.'s theorizes is that some people have a weaker genetic type and when you take drugs, prescribed, or not... it can lead to this PPD. Is there a cure? No. There are treatments... which I will not partake in as it has to do with taking more drugs that basically calm you down and I that is another story in itself. As of now there are a few doctors studying this condition. There are probably thousands of people who have some form of this disorder, but because there aren't many Dr.'s who know about it, or understand it these people can do nothing about it, but live with it... like myself. So prayer is all I have at this time.....
So I finally went and seen a headache Dr., a better one than last time. She diagnosed me with vestibular migraine. She didn't prescribe an anti epileptic, nor an antidepressant, tricylic etc... nope, just Verapamil. A calcium channel blocker. Of course I came home and googled the crap out of that medicine, and of course I scared the crap out of myself. After 1 failed attempt to take it, 1 call in to the hospital, and one call in to the Dr., I finally took it religiously and what do you know.... No more daily headache and I haven't had a migraine in 2 weeks. I am however, now getting heart palpitations even though I am opening the pills up and pouring out some. I am taking a very low dose so I don't understand why I am getting the palps. I am going to put a call in to the Dr. on Monday. Maybe she will switch me to tabs.
Well that's it I guess. I really wanted to come on and complain, but writing something informative for anyone who reads this is much more rewarding than me coming back on in 3 months to read an angry post. I guess I will just say, I wish there was more awareness of what SSRI's can do to the brain. Specifically the visual cortex, which is considered another brain itself, but very sensitive. A lot of people complain of light sensitivity on antidepressants, and this is why. It's also working on your 2nd brain. Had I known, or maybe had my parents known the side effects of putting a 15 year old girl on Prozac would have been, I'd like to think they would of nixed it. But the fact that my mom had been taking them for years.... luck certainly wasn't on my side. Maybe I was destined for this? So I ask God "Why me?"..... then that small still voice tells me that I chose this myself. Strange... very strange. My hope is that this will eventually wear off. That somehow my brain will correct itself as it is always trying to do, but the likeliness of that happening... probably slim. It would be great if some kind of a Dr. had a way to tell if my brain was permanently damaged, or if it's a matter or some wires being crossed. I guess we can send men to the moon, but have yet to master the brain? Strange!
Firstly I am starting to accept what may have happened to me. My vision and mental issues did start after I had stopped taking Prozac. Is that a coincidence? I am not sure. I have found plenty of people with thyroid disorder, like myself, who have the same issue. Some who have never taken an antidepressant before. So the term is called persistent perception disorder. For those who got it taking a hallucinogenic type drug, you would add that term in front of the other words. I however was taking Prozac so it gets a shorter name. Weird huh? So from what one Dr.'s theorizes is that some people have a weaker genetic type and when you take drugs, prescribed, or not... it can lead to this PPD. Is there a cure? No. There are treatments... which I will not partake in as it has to do with taking more drugs that basically calm you down and I that is another story in itself. As of now there are a few doctors studying this condition. There are probably thousands of people who have some form of this disorder, but because there aren't many Dr.'s who know about it, or understand it these people can do nothing about it, but live with it... like myself. So prayer is all I have at this time.....
So I finally went and seen a headache Dr., a better one than last time. She diagnosed me with vestibular migraine. She didn't prescribe an anti epileptic, nor an antidepressant, tricylic etc... nope, just Verapamil. A calcium channel blocker. Of course I came home and googled the crap out of that medicine, and of course I scared the crap out of myself. After 1 failed attempt to take it, 1 call in to the hospital, and one call in to the Dr., I finally took it religiously and what do you know.... No more daily headache and I haven't had a migraine in 2 weeks. I am however, now getting heart palpitations even though I am opening the pills up and pouring out some. I am taking a very low dose so I don't understand why I am getting the palps. I am going to put a call in to the Dr. on Monday. Maybe she will switch me to tabs.
Well that's it I guess. I really wanted to come on and complain, but writing something informative for anyone who reads this is much more rewarding than me coming back on in 3 months to read an angry post. I guess I will just say, I wish there was more awareness of what SSRI's can do to the brain. Specifically the visual cortex, which is considered another brain itself, but very sensitive. A lot of people complain of light sensitivity on antidepressants, and this is why. It's also working on your 2nd brain. Had I known, or maybe had my parents known the side effects of putting a 15 year old girl on Prozac would have been, I'd like to think they would of nixed it. But the fact that my mom had been taking them for years.... luck certainly wasn't on my side. Maybe I was destined for this? So I ask God "Why me?"..... then that small still voice tells me that I chose this myself. Strange... very strange. My hope is that this will eventually wear off. That somehow my brain will correct itself as it is always trying to do, but the likeliness of that happening... probably slim. It would be great if some kind of a Dr. had a way to tell if my brain was permanently damaged, or if it's a matter or some wires being crossed. I guess we can send men to the moon, but have yet to master the brain? Strange!
Friday, September 9, 2011
Flunarizine
So I just got word that a friend of mine who had had the same symptoms as me found a medicine that worked for him. It was suggested by the Dr. in California who is researching the condition. He has long known of its potential to work, I guess it doesn't work for everyone though. I am thinking of bringing it up to my neuro opthalmologist (sp) to see what he thinks of me trying it. At this point sitting and waiting isn't curing me. It however is preventing me from taking another chemical that could make me worse.
I have concluded upon my own research that taking a beta blocker, which I believe is close to the same class as the above medication, is what caused this problem for me in the first place. The added anxiety in my already stressful life took a turn for the worse while on the medicine and then once off it really did me in. The Prozac some how must of helped in some areas, but I was still having the break through light sensitivity which told me something wasn't right. And once the medicine started to poop out for me it was slowly getting worse with symptoms. Then stopping it brought it out completely only to slowly get worse as the months pass on. I am going on 3 years since the first onset of strange symptoms (while on the prozac). Someone told me yesterday that when you have it so long your chances of getting better decrease, (said in a different way). I'd be ignorant to believe that. That would mean I had no hope and that is a lie. I've had hope since day one. I have hope through Jesus Christ that I WILL GET BETTER!!!
I have concluded upon my own research that taking a beta blocker, which I believe is close to the same class as the above medication, is what caused this problem for me in the first place. The added anxiety in my already stressful life took a turn for the worse while on the medicine and then once off it really did me in. The Prozac some how must of helped in some areas, but I was still having the break through light sensitivity which told me something wasn't right. And once the medicine started to poop out for me it was slowly getting worse with symptoms. Then stopping it brought it out completely only to slowly get worse as the months pass on. I am going on 3 years since the first onset of strange symptoms (while on the prozac). Someone told me yesterday that when you have it so long your chances of getting better decrease, (said in a different way). I'd be ignorant to believe that. That would mean I had no hope and that is a lie. I've had hope since day one. I have hope through Jesus Christ that I WILL GET BETTER!!!
Wednesday, September 7, 2011
Mayo Clinic
So I first want to start this post and let you know discouraged I feel after seeing Dr's. Today my Dr. of 15 years told me he has never in his life seen a patient with my symptoms and they are rare. Not to mention they are no way related to my thyroid disorder. This is fine, the Thyroid relation part, but discouraging that he, being a Dr. has never heard of my condition... without a name. I am willing to get the surgery, which has been requested, to remove my thyroid, but now I am afraid of what will happen with the anesthesia and my unknown neurological condition. Could it make my symptoms worse? Could I not wake up? No one knows what my condition is or why I have it, how can they tell me I will be fine going under???
Anyways, I have decided I am going to try to get into the Mayo Clinic. I know I just need to go and see if they might find something that I haven't. Isn't this what the undiagnosed should do? I guess so.. but I have little hope with that too. Now it's the decision on which one to go to. Should it be the closest one... or is a distant one more up to date with medical equipment?
I have been praying every night for a miracle. I know God can heal... I just don't know why he hasn't done so with me. This whole ordeal has left me numb inside and it's so hard for me to believe in much of anything anymore, but I stand true to my faith and have to believe that something good will come out of this.
My eyes continue to get worse... afterimages have lessened some, but still there and still bad. Visual snow has gotten worse to where I can barely see in the dark anymore. Trails are much worse... can hardly function outside of the home with lights. Light sensitivity still present. Now I have been losing weight like crazy. My normal weight pre pregnancy was 160... that was with working out 5 times a day. I have cut out gluten to help with migraines, but I am now 130 lbs. This sound extreme to me since I am about 5 foot 7.
Before I go to the mayo I am going to see a gastrointerologist to check for common things. I am also seeing a gynocologist tomorrow since my period is non stop. Maybe it's hormone related since after having my sons the migraines started, along with the snow/static.
Any who... had a horrible migraine last night... Not sure of the trigger... maybe working on the computer at work. I don't know what I can do to stay home. I can not afford it, but it's the only time I can really function. I pray that this is figured out some how.
God bless everyone reading this who has similar symptoms. Some how... God willing, we will get through this.
Anyways, I have decided I am going to try to get into the Mayo Clinic. I know I just need to go and see if they might find something that I haven't. Isn't this what the undiagnosed should do? I guess so.. but I have little hope with that too. Now it's the decision on which one to go to. Should it be the closest one... or is a distant one more up to date with medical equipment?
I have been praying every night for a miracle. I know God can heal... I just don't know why he hasn't done so with me. This whole ordeal has left me numb inside and it's so hard for me to believe in much of anything anymore, but I stand true to my faith and have to believe that something good will come out of this.
My eyes continue to get worse... afterimages have lessened some, but still there and still bad. Visual snow has gotten worse to where I can barely see in the dark anymore. Trails are much worse... can hardly function outside of the home with lights. Light sensitivity still present. Now I have been losing weight like crazy. My normal weight pre pregnancy was 160... that was with working out 5 times a day. I have cut out gluten to help with migraines, but I am now 130 lbs. This sound extreme to me since I am about 5 foot 7.
Before I go to the mayo I am going to see a gastrointerologist to check for common things. I am also seeing a gynocologist tomorrow since my period is non stop. Maybe it's hormone related since after having my sons the migraines started, along with the snow/static.
Any who... had a horrible migraine last night... Not sure of the trigger... maybe working on the computer at work. I don't know what I can do to stay home. I can not afford it, but it's the only time I can really function. I pray that this is figured out some how.
God bless everyone reading this who has similar symptoms. Some how... God willing, we will get through this.
Thursday, August 18, 2011
Checking in
So it's been a while since I posted last. No real updates on me. I have been following up more on my Graves thyroid disease and the Dr. was requesting that I get it taken out considering it's grown very large. My lab work however is showing that my thyroid is starting to go back to normal after 10 years. I think this is impossible because I know how I FEEL and I FEEL hyper, at least more anxious. The anxiety could be because of the vision symptoms. Who wants to be constantly reminded that they are different and the chances of them seeing normal again is very slim?
I am now on part time with my work which has caused my husband to pick up a lot of slack with work and money. I am at the point now where I feel like throwing in the cards and moving up north to be with his side of the family. It makes me sad to think that while my son continues to grow, my symptoms continue to get worse. I won't be able to attend any soccer games at night because I can't see. I won't even be able to drive him anywhere at night, let alone myself. I feel like this is a death sentence at the age of 29. It's been 3 years and medicines the dr's throw at me has only made me worse. I fear that being on the prescribed antidepressant for 10 years off and on and then going off pretty quickly is what caused this. I can't even remember if I was still taking it when the symptoms came on because I didn't really mind them, I thought it was thyroid related.
The Dr. in California is still studying the condition, so this, besides a miracle from God, is my last hope(s). The last I heard they signed on a Dr. from Germany who is gathering information for the study. Once that is obtained, hopefull, and it's not guaranteed, but God willing, there will be some clinical trials going on. I know we are all different, those of us suffering or LIVING with this condition, so the cure might be different. But if they could just find out where in the brain and why then hopefully that will point to the cure.
My family doesn't understand and once it's not talked about it's forgotten. My headaches are back to daily again and the migraines have been more frequent. I WILL NOT take anything for it because it really does get worse. I just feel like my brain chemistry or electricity is doing it's own thing right now, but not the right way and it thinks it is. I am trying to ignore the symptoms in hopes that my brain will filter them again somehow, which I know is possible but some things you can't ignore. I see lines and patterns vibrating a lot more now. Even the bumpers on the cars in front of me while driving will vibrate. It's a shame....... I have so much will and desire inside of me that I am unable to get out. I am scared to do things because of my eyes and some things I am unable to do now. I pray night and day for a miracle..., but it's just not my time now I guess.
I sometimes wish there was someone close to me here who has it so they could understand and I wouldn't feel so alone. The aloneness makes me feel like I can not connect with anyone because they don't understand. The people I've found who have had these symptoms, but found their own answers stop talking to me after a few emails, probably because they are healed and don't want to relive the past. I understand, but I want to help others who go through this even when I get healed. Life is not meant to feel so alone. I know I am going to find MY cure, I just wish I had some more bright neon signs pointing towards it for me :)
I am now on part time with my work which has caused my husband to pick up a lot of slack with work and money. I am at the point now where I feel like throwing in the cards and moving up north to be with his side of the family. It makes me sad to think that while my son continues to grow, my symptoms continue to get worse. I won't be able to attend any soccer games at night because I can't see. I won't even be able to drive him anywhere at night, let alone myself. I feel like this is a death sentence at the age of 29. It's been 3 years and medicines the dr's throw at me has only made me worse. I fear that being on the prescribed antidepressant for 10 years off and on and then going off pretty quickly is what caused this. I can't even remember if I was still taking it when the symptoms came on because I didn't really mind them, I thought it was thyroid related.
The Dr. in California is still studying the condition, so this, besides a miracle from God, is my last hope(s). The last I heard they signed on a Dr. from Germany who is gathering information for the study. Once that is obtained, hopefull, and it's not guaranteed, but God willing, there will be some clinical trials going on. I know we are all different, those of us suffering or LIVING with this condition, so the cure might be different. But if they could just find out where in the brain and why then hopefully that will point to the cure.
My family doesn't understand and once it's not talked about it's forgotten. My headaches are back to daily again and the migraines have been more frequent. I WILL NOT take anything for it because it really does get worse. I just feel like my brain chemistry or electricity is doing it's own thing right now, but not the right way and it thinks it is. I am trying to ignore the symptoms in hopes that my brain will filter them again somehow, which I know is possible but some things you can't ignore. I see lines and patterns vibrating a lot more now. Even the bumpers on the cars in front of me while driving will vibrate. It's a shame....... I have so much will and desire inside of me that I am unable to get out. I am scared to do things because of my eyes and some things I am unable to do now. I pray night and day for a miracle..., but it's just not my time now I guess.
I sometimes wish there was someone close to me here who has it so they could understand and I wouldn't feel so alone. The aloneness makes me feel like I can not connect with anyone because they don't understand. The people I've found who have had these symptoms, but found their own answers stop talking to me after a few emails, probably because they are healed and don't want to relive the past. I understand, but I want to help others who go through this even when I get healed. Life is not meant to feel so alone. I know I am going to find MY cure, I just wish I had some more bright neon signs pointing towards it for me :)
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