Food Allergies

A couple of weeks back when I was getting willingly poked 50 times in my arm to determine my indoor and out door allergies I also did a quick blood draw to check for common food allergies. I had to wait a week for the results, but finally got the news yesterday. The conversation went something like this...."Well, you have a LOT of food allergies!!" Me; "WHAHUH????" "Yea, two of the worst are Milk and Eggs" ::Takes the gluten free egg product out of my mouth:: (J/K). But I had almost finished a bag of gluten free cookies that contained both of those products just 40 minutes earlier haha. I made my appointment for Monday this coming week.... I don't know what I should eat at this point. I am praying she doesn't say peanuts are out... I love peanut butter and need it like oxygen!!!! Ya know... just having a day where I can wake up without feeling like there is a brick sitting on my forehead would be wonderful! If I could breathe out of both my nostrils at the same time... that may just qualify for a happy day in my book. Onward and upward!

Updated VNG test results as well as allergy testing

I went back for another VNG test (caloric testing where they blow warm and cold air into each ear to induce vertigo as a pair of electronic goggles that you are wearing records your eye movements). I hated the test more than any of the tests they do there. I went for a follow up the very next day and was surprised to hear that my left ear is almost back to normal and my right ear (the very bad one) still had some damage, but was looking a lot better. It seems the head shake exercises are working. That same week I had an appointment for the vestibular rehab and was mentioning how panning movement from tv, video screens at church, and sometimes moving cars can make me start to feel off balance. She told me to buy a disco ball with different colors, one that rotates around projecting the moving images on the wall and do my exercises with it going. So far so good. It actually mimics the same movement that makes me dizzy. this will help aide in training my brain. I am feeling beter and more confident that one day I will be able to drive without any more issues. We are going on vacation in October to the Keys. I usually have no problems as a passenger other than the feeling that we are going too fast. I make my husband stay at 70 mph and remind him every few minutes when he tries to go faster. :) On another note: The same day I did the caloric ear tests I had to do a slew of allergy testing, shots in the arm (about 50 for outside allergens) and a blood draw (for food allergens). I got the results instantly for the outside allergens, but had to come back the next day to see if I had any delayed reactions. I am allergic to 3 types of grass, 6 types of mold, some weeds, cats and dust mites. I had a very long reaction to the cats and most of all the dust mites. My arm is still red and raised in both of those areas and that was from early last week. I was told that allergies can cause migraines and dizziness and that I should get allergy shots to see if it helps. I am waiting to hear back regarding the food allergies and then I will start the shots. So, that is all I have for now. I had been trying to save up to see an osteopath so I could go through Igenex to get another Lymes test done. They say its hard to get a positive Elisa on the Lymes test and since I did, I should go through Igenex. It would explain the thyroid issues, migraines, dizziness, muscle twitching, etc. I would just love to get an answer. Any who, yea, I had been trying to save up, but it seems once I have the money, I have to spend it on some other bills. This has been life......

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.

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.

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!!!

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!

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!!!