well...i went to get another opinion from a neuro-opthamologist (since my issues are the jumpy/shaky dizzy vision now). he spent quite a long time with me going over notes from my neuro-otologist that has prescribed me the noritriptyline (which i've been on since late november for 30mgs with no relief). he spent about an hour with me--believe it or not, doing tests and talking with 2 other docs in there. he seems to think that since i don't show any signs on testing or nystagmus tests he performed, that it isn't related to inner ear or vestibular system....>?
the patients he's seen with my symptoms that don't have any vestibular issues all have had some sort of brain trauma, or concussions. well, he asked me if i had had any trauma around that time, and i did..sorta. we ahd been to six flags and i rode the most horrible coaster ever--the wooden Texas Giant. and literally, i compared it to being in a car accident. i was in tears when i got off it and had an immediate immense headache. and i have been on tons of coasters at different parks--used to be a coaster junkie haha! this was horrible. however, it was about 2-3 weeks when that happened. he said it is possible to have had a slight concussion from it (he knew, he had been on it and knew how horrible it was). i am very small, and i was tossled like a rag doll. anyway, that is his thoughts on the situation, and told me that it usually goes away in time--2-5 years at the most. not happy. he also read in my dizzy doc (neuro-oto's) notes that he was perplexed with my symptoms and was trying migraine as he didn't know what else it could really be.

so that's it i suppose??? i suppose i'll try another migraine med in hopes it will still help, whcih this doc didn't say not to.

dont know what to think...any ideas/??????

I think if your tryinga migraine med you may want to try an SSRI as at least that can help with your anxiety/depression....

that was the reasoning for me and it worked

Alex..I showed no vestibular injury too...did plenty of tests..and came up with migraine. I think you are more likely to have migraine then tumor or brain injury. 30mgs of Nori is very low...and it seems to me you did notice improvement, just not huge. My doctor believes you should continue on the same med to the highest dose or to the dose you can tolerate prior to trying another medication...make sense? I am almost at 3 months and still on 30 mgs...that is just my opinion.

Wishing you the best.

Alex - what your neuro-opthamologist told you is in line with what my neurologist at UPMC's Neurological and Headache institute told me. I had so many tests done and saw so many different specialist until this doctor. He said I incurred trauma to my brain from a very serious reaction I had to an antibiotic 6 weeks prior to my symptoms coming out. When I research some of this, the symptoms of a brain injury usally surface 2 to 6 weeks after the incident. I was also given the prognosis of 2 - 5 years. I was also told by a previous neuro-oto as well as my neurologist that it is not related to a vestibular injury but central. Neither my neurologist or the neuro-oto believe my case is a result of migraine, but rather an injury I sustained to my CNS. I never had any problems prior to this, I have no family history of migraines and 100% or my symptoms started after the virus/allergic reaction to the antibiotic. I do not believe it is migraine in my case. Food does not trigger my problems; was on the strict Dr. Buccholtz diet faithfully for 10 months. The Klonopin I tried for over a year (sometimes given for migraine) only made my condition worse as it stimulated my already sensative CNS.

My current neurologist has said he has seen these symptoms and very similar recovery patterns to where I am today in others who came down with this junk after really bad cases of the flu and menegitis. He compaired the injury to a person that has an actual traumatic brain injury like in a car accident.

I'm not sure how far into this you are, but I can tell you at 3 1/2 years my vision has improved a lot. It is not 100%, but very close to it. I did see a neuro-opthamologist who was rude and did not have a clue in my case, but then an optomitrist said that my vision problems seemed to be in line with a central problem and not vision which would be in line with my neurologist.

I would not totally discount your neuro-opthamologist's theory. Perhaps he has a recommendation for a good neurologist that would work with him throughout your recovery. Another opinion would not hurt; only be to your benefit.

Best,
Gloria

I have a question....I never really thought about it but the end of feb 2007 i had a party and my best friend and my sister were there and we were all drinking and decided to go sledding.....I went to push my sister and my friend pushed me and i wound up going over my sister and hitting the ground and i may have hit my head it didnt hurt so i didnt think anything of it?? then the begining of march i got hit with vertigo....surely that would not have caused brain injury?? would that have showed up in MRI?? what symptoms come with that?

thank you all for your replies!!:) well, as far as anxiety and depression at this point, it is minimal to nearly non-existant. now i am hitting my 10th month since this all began--the first few months were horrible and i was on xanax for a month and got off them. i've been back to work and college since mid-august. i'd say since october, i've been pretty calm--but more frustrated than anything. haven't taken a xanax since end of july, begging of august--just don't feel the need...no panic attacks since then at all. i've had my depressed moments--sure--and they are less and less now. all i really want is a true diagnosis--which seems to be hard in my particular case.

as far as the nortriptyline, i went up for a bit to 40mg but i was like a zombie and couldn't handle feeling like that-i have WAY too much to do right now to feel sleepy all day. so i've been back to 30mg again for quite some time. so that's really been 4 months now. i haven't had any improvement with my eyes on this whatsoever. i have had a decrease in headaches, but that's about all. they weren't horribly severe to begin with...more like shooting pains every now and then. so i will see what my neuro-oto wants to do with the migraine mes...i would like to give the neurontin anotehr shot but at a lower starting dose than 300mg. we'll see. charlotte....how are ya doing???


gloria, thank you so much...i have read you're posts about your reaction, and i find it similar to mine. well, i did have the horrible ride on the coaster and started feeling bad, then my doc thought i was having an ear infection and gave me antibiotic for that...well, had a severe allergic reaction to it...and let's just say things snowballed from there. it was after that, i started having the weird vision that is now morphed into the constant jumpy vision. so maybe a combination of the ride and the antibiotic. maybe the head "injury" would be causing the headaches in the first place. i'm like you...no real history of headaches/migraines in family or my history...so it's kinda like-- ok?!?!:confused: i am glad to hear it has gotten much better for you...were you having my kinds of visual symptoms? i just find it too coincidental about all this with the reaction and the horrible car accident like ride...ya know!

d&s...my doc said yesterday that a brain "bruise" or slight concussion would not show on my MRI, etc that i had done. he said there's really no way to see it. he just told me that my type of symptoms where the same as people he's seen with brain trauma or concussions. i'm not sure if all symptoms would be the same for injuries to different parts of the brain. all i know is i had immediate pain and a horrible headache/dizziness once i stepped off the ride, so who knows. i hope you are doing better, i know you are having quite a struggle with this. i think what annoys me is not knowing 100% what is wrong, and i'm always second-guessing to find a way out or treatment for this horrible curse. i feel like my life has been stolen from me and i'm desperate to get it back--that's why i wanted a second opinion from this doc.

alexi it is weird that you said that you went on a roller coaster ride two weeks before it happened i went on several for the first time ever about ten days before my jumpy vision thing began

alexi it is weird that you said that you went on a roller coaster ride two weeks before it happened i went on several for the first time ever about ten days before my jumpy vision thing began

hmmmmm...makes me wonder!!!!! how have you been? are you just left with the jumpy vision...or do you have weird days where you just don't feel well along with it--like almost sick?? do you have any headaches, or sharp pains in your head?

No Just Constant Shaking Vibrating Shifting Jumpy Vision 24/7

Heh... 2-3 weeks before I had my first vertigo episode, I was out in the ocean and got smashed head first to the bottom pretty forcefully by a wave. Remember that cause I haven't been back in the ocean since....

I did tell my neuro about it and he asked a few questions, but since my symptoms seem to show a vestibular problem and there is no indication of central problems, he didn't really pursue it. Maybe I should bring it up next time.

Hey there...

I have to say this week I have had some really good days, 1 not so great. My good days are almost symptom free...some belly stuff or some headache minor stuff...but really much less woozy and eye crap.

I am sure I will have to bump up at least one more dose...but I am happy that I see improvement.

Hey there...

I have to say this week I have had some really good days, 1 not so great. My good days are almost symptom free...some belly stuff or some headache minor stuff...but really much less woozy and eye crap.

I am sure I will have to bump up at least one more dose...but I am happy that I see improvement.

charlotte!! that is wonderful!!! keep at it woman:D i forget, what dosage are you at now? 20mg or 30mg? i just couldn't handle the 40mg--it was just too much drowsiness for my schedule lol. seeing as how the vision hasn't improved any, i figure i should try something else, maybe the neurontin that the first neurologist prescribed, but at a way lower starting dose. i am so glad you are seeing the improvement!! i'm just not. i would much more gladly keep headaches and the constant visual crap GO AWAY!!! i just don't know what to think anymore :)