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!!!
Thursday, February 23, 2012
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 :)
Thursday, June 30, 2011
My first video upload on VS
So today I posted my very first video on my fight with VS and the migraine - Here is the link http://yhttp://www.blogger.com/img/blank.gifoutu.be/7ou7GgcpMoo
I went to the Neuro Opth. today... he still thinks it's migraines. He wants me to take Elavil, but I am too scared. He did the normal steroid shots, this time getting my upper neck as well. I am pretty sore, but hope it helps. He still says I have occipital neuralgia as well....
I recently heard that Dr. at UCLA in California has signed on a Dr. from Germany to start the research on VS, and will hopefully lead to future studies. I am so happy about this and it really gives me a lot of hope!!
I have been going to church every Sunday to get my relationship back with God. It's tough when you have a condition that makes you feel so disconnected, but I will get there.
I am now working part time to help with my headaches and stress levels in hopes that I might have a breakthrough and my VS lessen or disappear. As of now it's been me running around to collect Dr.'s notes and medications prescribed from 2006 to see if there is a connection somehow with a medication I was put on them when my wonky subtle symptoms started.
Some days I feel sorry for myself... especially when I see other people my age with a child and they are having fun with no limits. I miss that. My light sensitivity is so severe I can't drive at night. When my son gets of age to start sports I won't be that mother on the sideline cheering.... unless, God willing, I get better.
I am still thinking about getting my thyroid taken out to see if it helps with anything... the medication for the graves disease is such a harsh medication and taking it for 10 + years is awful.
That's all for now!!!
I went to the Neuro Opth. today... he still thinks it's migraines. He wants me to take Elavil, but I am too scared. He did the normal steroid shots, this time getting my upper neck as well. I am pretty sore, but hope it helps. He still says I have occipital neuralgia as well....
I recently heard that Dr. at UCLA in California has signed on a Dr. from Germany to start the research on VS, and will hopefully lead to future studies. I am so happy about this and it really gives me a lot of hope!!
I have been going to church every Sunday to get my relationship back with God. It's tough when you have a condition that makes you feel so disconnected, but I will get there.
I am now working part time to help with my headaches and stress levels in hopes that I might have a breakthrough and my VS lessen or disappear. As of now it's been me running around to collect Dr.'s notes and medications prescribed from 2006 to see if there is a connection somehow with a medication I was put on them when my wonky subtle symptoms started.
Some days I feel sorry for myself... especially when I see other people my age with a child and they are having fun with no limits. I miss that. My light sensitivity is so severe I can't drive at night. When my son gets of age to start sports I won't be that mother on the sideline cheering.... unless, God willing, I get better.
I am still thinking about getting my thyroid taken out to see if it helps with anything... the medication for the graves disease is such a harsh medication and taking it for 10 + years is awful.
That's all for now!!!
Thursday, June 23, 2011
Anxiety..... rearing it's ugly face at 12 am
I haven't had anxiety this bad in a long time. I used to get bad anxiety in my teens and would crawl in to bed with my mom while she helped me through it. I don't have here anymore and no one else understands what I am going through. My son is sleeping peacefully in his room and my husband is asleep in our bed. I keep feeling like I can't breathe and want to go to the hospital. I have been waking up out of breath lately and fear that I have sleep apnea as it's getting worse and worse. Part of me says go to the hospital, but the other part says no. I don't want to die!!!! Why am I going through all of this hell??? I am a mother and a wife... I want to be just that... not a young woman going through all of this. It isn't fair to my husband and son, it just isn't fair!
I've had to take kolonopin, which I hate taking, and it's making me tired, but not helping with the not getting a breath bit. If this doesn't go away by 1:00 am I think I am going to go to the hospital. Usually my anxiety is the mind racing bit, not the I can't breathe bit, so I am pretty scared.
I've had to take kolonopin, which I hate taking, and it's making me tired, but not helping with the not getting a breath bit. If this doesn't go away by 1:00 am I think I am going to go to the hospital. Usually my anxiety is the mind racing bit, not the I can't breathe bit, so I am pretty scared.
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