Update.... still getting no where

It's been a while since I last posted.... frankly there really isn't anything to update on. I am still facing the same issues and now my vision is even worse. I feel like I have been tossed around and forgotten by the medical field. I have seen more doctors than probably a household would in their lifetime. My last neurologist tried me on Lamotrigine and when I told him it was making my ears ring he told me it wasn't from the medication. However, when I stopped the Lamotrigine.... the ringing stopped too (went back to normal ringing for me).

I have a new Neurologist (actually one I visited in the beginning, but left because I didn't like his office staff). He still very much feels like this is all related to my thyroid condition Graves' disease and the high antibodies it is producing. I guess thyroid antibodies (and antibodies in general) can attack even more than just the organ (organs) they are attacking. I really don't know how to explain this so I will leave it at that.

My recent blood work has shown that my ALT is elevated and it was elevated earlier this year too, which my endocrinologist failed to mention. So I am showing signs of a fatty liver without being an alcoholic and without being over weight. It's like my damn body is just slowly shutting down and I can not do anything about it.

I am seriously thinking about going to Mayo clinic, but I have no idea what they will find... most likely nothing and it will all be just a waste of time.

My vision is getting so bad that watching any type of movement is bothering me. It's like my peripheral vision is getting hung up on my central vision. WHY THE HELL IS THERE NOTHING LIKE THIS IN MEDICAL LITERATURE????? I don't understand this. Why am I having to educate my doctors too and I don't have a fucking medical degree, It's really bringing me down. I am getting close to my quitting point and that scares me because I always said I would never give up.....

Things that I am trying to look into further-

Reducing my thyroid antibodies to see if that helps at all by -
Taking selenium to reduce antibodies or
Taking LDN (Low Dose Naltrxone) to reduce antibodies or
Removing my thyroid to reduce antibodies

Once antibodies are done I want to retest for Lyme as my neuro thinks my high thyroid antibodies are cross-reacting with the lyme tests.

Testing Anti  NAE antibodies to see if I have Hashimoto's Encephalopathy

Try other migraine preventatives to see if I get relief

I am also trying very hard to stay on an autoimmune diet to see if that helps me at all (I've failed miserably at this diet because I already stay away from so many other foods).

So this is where I am.... I never in million years thought this is where my life would be.... at a stand still. I really pray that one day I will post a happy ending on this page and be able to help others to not give up.

A day in the life of Visual Snow

This morning I woke up... I enjoyed the few seconds of silence before my brain decided to turn up the volume on my tinnitus. My tinnitus sounds very similar to that of a far away tea kettle screaming on a hot stove begging to be taken off. My first thought is "It's still there!"

I blink my eyes several times to focus on getting into the bathroom. If it's too dark I have a hard time due to an off balanced sensation I often get.

I jump in the shower and try not to focus on the tiles in my shower which appear to be flashing when I move my head. This is very similar to a light being turned off and on very quickly. The tiles also shimmer and shake ever so slightly. 

After I get dressed I go into my sons room to wake him up for school. I make my way to his bed while navigating through a dimly lit room and a visual field full of static. This is very similar to an old analog television screen having bad reception. My eyes make brief contact with a sliver of light shining through my sons window. I am then left with an afterimage of that light (a vertical line appearing everywhere I look for several seconds). 

After my son is dressed I get into my car to drive him to school. I try and focus as hard as I can on one object as everything in my peripheral vision appears slightly choppy. It's basically like looking at a moving image behind an oscillating fan. The medical term for this symptom is conspicuous akinetopsia. You are more likely to get into a plane crash than getting that particular symptom. I can still drive and I can see all movement, however movement in my peripheral vision is not as fluid as movement in my central vision. The anxiety that this causes swells up inside of me. Some days I fight back tears while my son is in the car because it terrifies me to think about my future. I sometimes glance at people in the cars next to me. Some with smiles on their faces enjoying life. Others upset over traffic as if it were the worst part of their day. I immediately become angry and jealous over my situation. I try my best to overcome this by positive thinking, but it's hard. I have had this condition for over 7 years and though we've located the areas of the brain that is causing these symptoms, we still have no treatment. In order to find a treatment, we need more medical studies. In order to get these medical studies done, we need funding. 

I have been on the other side of this illness. I have been the person smiling in the car enjoying life and I have been the person screaming at others in traffic. I never thought about donating to any cause because it didn't pertain to me. Infact I just didn't really care because I had too much going on in my own life. I understand this thinking. But we need to change this type of thinking. There are so many people out there struggling with different conditions and they need help as well. 

Please consider donating to help continue studies on Visual Snow so that one day I might be able to see normally and enjoy my life once again as well as countless others.

www.eyeonvision.org

www.gofundme.com/visual-snow

So confused

I usually don't get this down in the dumps anymore.... I mean sometimes I do, but usually my husband is here to console me or I just kind of suck it up and move on. My husband isn't here at the moment and I am just as blue as one can be. In light of the recent tinnitus stuff and me tapering off the lamotrigine I just don't know what to do anymore. Part of me says to give it another go and just see if the tinnitus happens again and if so then discontinue it and move on. BUT.... I am just facing the reality of this disorder.... there is NO cure! If I get even a little bit better with a certain medicine it's by chance. I am just feeling really down about my future. I can't look ahead to anything because I don't know where I will be then in terms of progression of this illness. Part of me feels like I would be better off not being here... I know that isn't rational and I would never hurt myself... it's just my broken brain. I can't help but look around me at all of the horrible people in this world who have no issues and here I am trying my hardest to function and wouldn't hurt a fly.... I just don't get it.


The brain is still a mysterious organ for us.... I just pray that soon there is an answer for me and a treatment....

Discontinuing Lamotrigine

So about 3 weeks ago I started the lamotrigine. I had a lot of anxiety over it due to the rash it can give you, Steven Johnson. The first few days I experienced itching and tiredness. Then around the fourth day, a few hours after taking the morning dose of 12.5mg (25mg split in 1/2) I would get an increase in energy. This lasted for the first two weeks. During the three weeks on it I noticed my mild tinnitus was getting louder. Last week I woke up in the middle of the night to my ear screaming. I immediately had a reaction of anxiety and once I calmed down I was able to fall back asleep. The loud tinnitus lasted for about three days and then seemed to calm down to a less noticeable ringing (louder than my normal though). I wasn't too sure what caused the initial ringing so I just passed it off as an isolated incident. Then last night the same thing happened. I woke up around 4am to my right ear screaming so loud. Again the anxiety hit, but I talked myself out of it. I did pull up Doctor Google and found that it's a common side effect of the Lamotrigine for some and for some it remains permanent even after discontinuing the medication. I did see my doctor two days ago, but failed to mention the tinnitus even though it had happened a week earlier. I did tell him about the itching and he reassured me that I would not experience any side effects on such a low dose and that it was just anxiety. I cried in my car that day because he made me feel so stupid. Any suggestion I made about possible treatments were turned down. Anyways, he told me to increase the med which I was going to do yesterday. I am glad I didn't, because that was the night of the 2nd tinnitus episode.

 I always feel worse at night and my only guess is because the drug's plasma concentrations are thinning and my body wants more medicine. I know that sounds crazy, but I am VERY sensitive to MOST medicines. Usually migraine patients are and it isn't just an excuse. The faster the medical community listens to their patients saying this - the easier patient-doctor communication and trust will be. Doctors like to put you on a medication that they have faith in because they have seen it work. Vestibular Migraine patients however (usually on their 5th+ medication trial) are scared about side effects.. usually worsening of their symptoms. Doctors become frustrated because we want to take it as slow as possible. I was told my appointment was a waste because I was still taking such a low dose. To me it wasn't a waste because I was going there for reassurance. It became a waste once he said that to me though. It appeared that my last appointment was a waste as well and so were the 2 months that I went without seeing him in between visits because I could have spent that time searching for a more understanding and compassionate doctor.

So here I sit with a little less than 12.5 mg of lamotrigine wearing off in my system and a high pitched- low-level hissing in my right ear. Every once in a while a movement will throw me off balance, but I recalibrate myself. I begin to feel sorry for myself as well, but I try to think positive. It's hard to make plans with anyone because I have no idea what tomorrow brings for me. If I wake up dizzy in the middle of the night, that usually indicated that I will be extremely off balanced in the morning which ruins my day. I hear stories of some people moving on with life and just living with the dizziness. I can't.... I absolutely can not! I am determined to figure out what the hell is going on with me and fix it!! I refuse to take this lightly. There is no reason why I would wake up one morning and my world be changed. Something happened and it has a solution. I just need to find a doctor who is willing to work with me. A doctor who is patient and trusts me so that I can trust him/her. If he/she is out there... I will find them....

Been a while

It has been quite some time since I last posted. The 2nd phase of the Visual Snow study has commenced in Munich, Germany. We are currently awaiting those results. Professor Goadsby is in the process of starting up the 3rd phase of the Visual Snow study at Kings College Hospital in London. We are currently raising funds to hire a full time researcher www.gofundme.com/visual-snow.

Update on me-

I am still dealing with daily visual snow symptoms, but on top of that I am dealing with vestibular issues. I was first diagnosed with bilateral vestibulopathy and then later diagnoses with Vestibular Migraines. At the time of testing when I was diagnosed with vestibular migraine I had ZERO weakness in either ear. I was told that I most certainly have no issues physically with my inner ears, but that it's the migraines which causes the dizziness. That diagnosis was music to my ear, but it still leaves me questioning the diagnosis's. What if my most recent diagnosis was wrong? I should just let it go, but it's tough. I wouldn't be able to do anything anyways. The migraine variant is the best outcome because I can continue on with the treatment I am on now, Verapamil and Lamotrigine, to see if it helps with the dizziness and vision issues. It still seems like everything is way worse right before my period and my OBGYN has said my hormones are all within range. I just don't understand it all. I have the chance to go to Louisiana to see a doctor who specializes in diagnosing vestibular disorders. The only problem is he doesn't work with any insurance companies and wants $4,000.00 for testing and then I would have to submit a claim to my insurance company.... who could then deny it. I should just be happy with my diagnosis and leave it at that....., but my mind doesn't work that way. If my medicines would start working that would prove that it's a migraine variant.

Finding the silver lining

MUSIC - I wrote a very long detailed post about finding the silver lining in life with an illness. I decided to erase it. My silver lining isn't going to be YOUR silver lining so there is no point in me rambling on about my love for Music, but I will tell you that it has re-awoken something inside of me that I haven't felt in years. Music has the ability to bring back memories so much that you can mentally relive them and physically sense them. In alzheimers patients there have been some fascinating results with playing music through a set of headphones and it bringing back the patients for minutes to hours at a time. I use music to bring me back. Music is helping me find the silver lining in my walk with this illness.

WRITING - What you are thinking everyday.... the pain you feel, the silent war that is going on in your head.... let it out. Write it down or type it out. Keep it to yourself or post it on a blog for all of the world to see... just don't leave it caged up confined to a secret folder buried in your frontal lobe... it's not doing any good there. And who gives a shit what you say? Either someone will read it and like it, or they'll hate it... but at least it's out.

FRIENDS - I've lost most of my friends after this illness happened. They couldn't understand why I wasn't able to party with them anymore. Why I couldn't do the long distance trips for a night out. Some I lost because I was married and had a child and others I lost because they knew I changed. I was very young when this hit. I instantly became twice my age.... The good thing is I've gained quite a few friends along the way. Real friends. Genuine friends. These are people who understand what I am going through and still want to talk to me. People who know all about my dirty laundry and frontal lobe secrets and they still call me.

Finding the silver lining in your illness isn't always easy. Most of us are consumed with the 'what if's' and I totally get that. I am the first to raise her hand and admit that I am afraid of EVERYTHING since getting this stuff. My life consists of barriers that I have placed around myself. What I am protecting myself from, I have no idea, but I am learning that if you are scared of something then it means you need to do it in order to set yourself free. So... i'm finding the silver lining in my illness.... and you can too.