Looking for a little guidance

my history of what I have been dealing with and when this started-

Mid 2006 I came down with a horrible virus. My throat swelled up and I couldn’t swallow. I was put on antibiotics (cipro), a beta blocker because my heart was racing (propanolol) - I have hyperthyroid so I guess I was at risk for complications with my heart beating so fast. I was also put on something to help with congestion. I ended up going to another doctor because the sore throat would not go away. I was given more antibiotics. Everything got better and life went back to normal.

August 21st, 2006 I went to see the doctor because my periods had stopped for 4 months. I was given birth control to take which I took immediately.

August 22nd, 2006 I woke up to the world spinning. I made it to the bathroom and threw up. I immediately went in to see an ENT who diagnosed me with allergies and blamed it all on some recent exposure to mold in my house. He did send me for testing which showed a little weakness in my ear, but it wasn’t significant. He sent me home will nasonex and some other allergy medicine - also meclizine.

I remember my vision going funny one day while on the meclizine… it was like my depth perception went haywire and I had none… just flat vision. I stopped taking that medicine and continued on. I just kind of dealt with feeling off balanced for a while… the vertigo never came back.

By November 2006 I started getting anxiety and depression pretty bad. Also I was having issues going into grocery stores or just blue light in general (Like when the sun starts to go down and the sky is so blue). I also felt so out of breath all of the time and I felt it must have been a side effect from the propranolol and decided to slowly wean off of it. The anxiety and panic attacks ere getting so bad that at one point I had one that lasted for 2 days. I was left feeling completely disconnected from myself. I felt horrible pressure around my head like a rubber band was around it. The dizziness had been gone for quite some time so I didn’t connect it to anything. I was told that this was just anxiety and I needed to get back on Prozac, which I had taken in the past for anxiety. With in 2 months I was back to feeling like my self again, but still felt a little disconnected. I lived like this for close to two years.

I remember having a really bad migraine in 2008 when I was on vacation in the mountains. I hadn’t had a migraine in a very long time (probably years) I usually only had headaches. Some time after that migraine I started having the same old vision issues. Mainly I noticed it at night with being so sensitive to any blue light, fluorescent light, etc. I had been arguing with my boyfriend during that trip so maybe that provoked it.

Then in Jan of 2009 after a trip to visit my boyfriend in Michigan, I remember seeing these white wispy sparks reflecting off of the snow. I later learned this was called Blue field entopic phenomenon. By the time I had gotten home from that trip, within a couple of weeks after moving in to a new place with my boyfriend (who had just moved back to FL) I had started getting off of my medicine, Prozac, and immediately started noting trails whenever my dog walked past me, or when a car would drive past me in traffic. It was just a dark smear that would follow the object. I figured it was related to my thyroid issue. I found out I was pregnant a few weeks later or so and noticed only slight issues, such as halos were around bright objects. Within two months my mother passed away suddenly and it put me into a state of shock and depression.

Later during my pregnancy, near the end, I started getting anxiety and began having a pressure feeling behind my eyes. A dull ache that would last for hours.

I had my son in December 2009 and in January 2010 I decided to get back on the prozac because I was feeling really depressed. Within a month I was feeling awful again with the blue light, fluorescents and I started getting the rubber band feeling. Then came the headaches. This one in particular lasted two weeks straight. My doctor decided to switch me to zoloft. My headache went away, but then on day 3 of the medicine I started seeing static in my vision, I’ve learned this is called Visual Snow. I immediately stopped the medicine.

Low and behold after stopping the medicine the migraines started. They were every single day and usually began right around mid afternoon and just got worse as the day went on. By the time I got home from work I would have to go straight to bed. I missed close to 2 years of my sons life because of the migraines. The migraines were pure pain. I didn’t feel too off balanced, but I knew my balance wasn’t right when they hit me… if that makes sense.

I made an appointment to see a top rated neuro who specialized in migraines - it took over 6 months to see her. In the end I was sent to someone who trained under her. I was immediately diagnosed with basilar migraine and put on Verapamil. I was on 40 mg tabs 3 times a day. Within 2 months I got my life back. The migraines were rare and usually once or twice a month.

Then it seemed after being on the medicine for close to a year I was getting dizzy when in a vehicle. It was as if I couldn’t determine which way was up and which way was down. I had to keep looking at the horizon. Things started looking like they were bending (The road I mean). Long roads were the worst… they looked like they were leaning forward and my stomach would get that drop feeling. I was sent to see a neurotologist who did caloric testing and others and said I had major loss in both of my ears. I had zero response in one and about 20 in the other. He said it was Bilateral Vestibulopathy, which made no sense to me because I was walking fine and wasn’t dizzy… the only time I was dizzy was in a moving car or like after being on an elevator. I also got super dizzy during the testing and got bad vertigo, which I have read doesn’t happen with bilateral loss of that nature. I was sent for vestibular rehab. I did it twice a week in the office and daily at home. I hated it and it always made me feel worse.I could never really provoke any dizziness, because I wasn’t ever dizzy unless I was in motion. It just didn’t make sense to me. I did however stop taking my verapamil because I hadn’t had any migraines in a while…

The doctor retested me and said my calorics were good and I had increased my numbers… again I had horrible vertigo from the testing.

The day after my last VRT visit I was driving home from work. I remember stopping at a light and noticing the cars passing me looked like they were going 100mph. It was as if everything in my brain had sped up. After it passed (a few seconds) I called my husband to tell him and we laughed about it. I remember I did have a migraine that hit sometime around this same time. Well, a week later I started seeing delayed vision… it was like gaps were missing in my peripheral vision. Objects moving fast looked like frames were missing, or like skipping… choppy vision is how I described it. This has remained and I usually notice it when driving, or walking… anything in my peripheral vision skips and is missing frames. It sucks to say the least.

I started back on my Verapamil, but this time on 40mg’s twice a day. It started helping again with my migraines, but none of the vision stuff.

Through all of 2012 I would every once in a while feel like my brain would shut off for a second… it was like my head would feel like it was falling to the side, real fast, split second. I thought maybe it was from my blood pressure. I ignored it.

September 2013 I started getting dizzy. I went to the ent who said it was probably BPPV as it happened when I was parking my car and looking down at a piece of paper. It did the eply, but nothing happened. Within a couple of months I started getting a rocking sensation. It was always worse around my period and seemed to fluctuate when my hormones would. Eventually this stopped when my periods did. I had two months of relief. Then my periods came back on and so did the dizziness. It’s been with me ever since.

I tried decreasing the verapamil because a doctor online told me it was ototoxic and could be causing the dizziness.

I just recently seen a top specialist for dizziness and he did tons of tests on me including a rotary chair study and a test where I where the same goggles used in the rotary chair test, but they shove my head around. Everything came back normal. He said I have zero inner ear issues and it sounds like migraines and I should look into getting on birth control and it may help. I have been scared to do that… so here I am.

I have been on the migraine diet for a while and actually hadn’t eaten chocolate or sour cream for close to two years until the last two days. I am now paying for it. I am close to being off my monthly cycle and usually by this time I feel great, but I feel off. I feel like I am a second away from spinning (I never get true spinning vertigo… or atleast it’s rare). Sometimes however when I close my eyes it looks like spinning for some reason. Is there anything I can do at this point to help?

I wrote to a doctor at John Hopkins (a neuro who specializes in dizziness) - He said my symptoms sound like Vestibular Migraine. My question is if this is migraine… why hasn’t the verapamil stopped the dizziness?

I am sorry this was such a long post.

I forgot to mention my current symptoms

If I sit on on anything soft such as a soft cusion at a restaurant, a bed, a rocking chair, and if I look at my phone or am reading and there is even the slightest amount of vibration or movement, it makes me feel like my head rushes, or swooshes.

Some nights, not always, but some nights, I feel like I don’t know up from down when it’s dark. I always keep little LED lights in my room so I can see, but I still feel disoriented at times. The same goes for when I lay down in bed and close my eyes… sometimes, most of the times, I feel like my head is floating or my body is floating and I can’t tell where I am in space… if that makes sense.

If I am laying on my side and look at the wall my brain starts thinking I am actually standing and the room is sideways… it’s very strange… it’s like my brain can not make sense of what position I am in.

Some days I feel as if my movements are all exaggerated and my brain is slow to catch up.

Some times when I am walking across the street to take my son to school I will feel like I am leaning too far to one side or like I am just going to fall down… even though it’s not going to happen… I never lose my balance… it just feels like it may happen.

When I take a shower and close my eyes it seems like when my eyes move as my head does it seems like I am going to spin. I know this sounds weird… I think it may have to do with all of the floaters in my eyes and just seeing them move… I am not sure.

My peripheral vision is the worse… If I am sitting in my car and someone walks past it I start feeling like I am moving or about to spin… this lasts only a second. If I watch moving traffic I start feeling the same way. I am very sensitive to watching repetitive motion. I am also now afraid of open fields, or open spaces… it’s so strange. I feel better when I have something to touch or hold on to.

I am 33 by the way and all of this started at 24. I used to work out 5 days a week and was into water sports on the weekends. I was very active and in top shape when this hit me. Now I am lucky to feel fine walking my son to school.

On top of this I have the visual snow symptoms which is a whole other case of fun!

I also have chronic neck pain. I have allydonia too, which I have read is rare… well whats even more rare is I’ve had it since I was a child and attributed it to a head injury I sustained as a child. Not sure though. I also used to get bad stomache aches as a teenager… maybe this was a form of migraine?

Hey Candi, Have you tried Topamax? Nortriptyline helps my symptoms too even at 10mg (although for the first week I thought it was making them worse, but then it helped with the fluorescent light sensitivity and balance issues), but I think Topamax might go to the root of the problem better by calming the nerves down over time (but it takes longer to work so you have to be patient through side effects).

Does your neurologist who said that you have Migraine Associated Vertigo (MAV) - and it does sound like you have that (I too have many of your symptoms but not the visual snow) - recommend you try titrating up to 50mg of Topamax for a few months to see if that helps and go higher if you need to get more relief? I know how hard these symptoms are, and how quickly they start (I had a virus type thing when the vertigo and light sensitivity started in 2013).

I think the consensus on this forum is that everyone can get better from MAV with the right medicine and dose for them. It’s just a matter of time to find that. xx

Hi, Liv,

Thank you for writing me! The first neuro I saw prescribed it for me, but I never took it because I’ve heard that it had brought out permanent visual changes for some who have taken it. I was doing a lot of googling then lol and think I did more harm than good.

Currently I am increasing my verapamil to see how that goes and I have been thinking about trying Lamictal as well as I’ve heard it’s helped some.

I know it’s all going to be a matter of finding what works for me, I just hope it’s possible and I can stick through it. The thought of side effects really scares me, but I know it’s a part of getting better, and Lord knows I want to get better.

Xx

Hey Candi!

Yes, these symptoms are super strange and so hard to deal with, but I think we can take encouragement from this forum that everyone gets better with the right drug! The internet can be helpful but also kind of bad too! I agree. But overall I’ve found academic literature online about MAV really useful since it’s something that’s so elusive to get dx-ed with - I initially went to so many ENTs with no help! Neurologists are much better.

Other than topa, there are articles about nortriptyline at 10-40mg being very useful to lessen the symptoms for women.

There are also articles about cutting caffeine and that helping a lot. This is a pretty informative link:
http://www.tampabayhearing.com/vestibularmigraine

And this girl was cured by 30mg of nort combined with 100mg of zoloft: http://www.xojane.com/issues/migraine-associated-vertigo

I find that if I avoid chocolate and coffee 100% during the day along with avoiding citrus that helps a great deal, and nortriptyline has helped me at 10mg/day. I think topamax helps too at 25mg but any higher than that and I struggle with side effects.

Since I am of childbearing age, I may end up talking to my neuro again in Jan. about just doing nortriptyline at a higher dose for a couple months to see if it controls my MAV along with anti-migraine diet and getting of topa perhaps (and saving that as a last resort).

Hope you have a restful Christmas. I find that if I take nort. 12-14 hours before I want to wake up, I sleep really well and am not too tired the next day - it also helps alongside topamax to help with sleeping if you end up taking that.

xx

Hi, Liv! The article you sent about the caffeine, that doctor is very close to me. I am going to make an appointment to see him as he seems to be the only one in the area familiar with them is condition.

I actually don’t do any caffeine, or really any of the common triggers for MAV. It’s strange. It seems to be hormonal for me. Although I did have 2 pieces of chocolate the other day for the first time in 2 years and some sour cream which was the first time in 2 years too. I’ve been having a migraine every day since… not much dizziness, but lots of head pain. I learned my lesson there lol.

I don’t think the Dr close to me is a neuro who knows about MAV, but he quotes Dr Hains page so he must know something. I will let you know how it goes.

Thank you for your replies. Xx

Hey Candi!

Yes please do keep me posted on how it goes! I’m glad that dr is close to you. :slight_smile: I am seeing a neurologist who keeps saying this is more anxiety related for me but I know that it’s more a migraine thing because of the dietary triggers causing the symptoms to be a lot worse. I had to go to a work event where I ate a slice of chocolate cake and a coffee I was done for! I had such a bad migraine by the end of the day and was so dizzy. MSG seems to trigger symptoms for me too. MSG seems sometimes to be secretly in the “natural flavors” ingredient in prepared foods.

Mine does seem hormonal too to some degree. The strange part is that I took some L-Tyrosine capsules a week or so before the symptoms started in 2013 for anxiety (ironic!) - and I think it tipped some types of chemicals in my brain to the migraine state or something. But I also had a virus when it started, so I don’t know what happened.

I think that nort. and other SSRIs like Zoloft can set the chemicals in the brain right again and remove the migraine state. Sometimes things in combination seem to help more. Maybe you’d want to try to go back on Zoloft and combine it with nort? The girl who wrote that xoJane article said that it worked in combo for her.

I will try to experiment with things this year and let you know if I find my magic cure. xx

1 Like

Thanks Liv!

I hope you find the right combination. I think you will as you seem determined and that’s one thing we need haha.

I’ve been gluten free, allergy free, caffeine free, msg free, you name it haha, for literally two years. It seemed to help a lot, but I do think the other triggers like hormones, smells, lights, etc. are triggers too. My threshold must be very low I think =(

I would kill to be able to eat chocolate cake lol. Yummmmmmm!

Too funny that your neuro says anxiety related… I def. agree with you about migraines. My dad always has sinus headaches, but they wipe him out… I am sure he has migraines and isn’t even aware of it. My cousin gets them too, with the aura. So we have a genetic link.

I will stay in touch =) xx

Hey Candi!

Thank you! Yes, I’m really determined to get better :slight_smile: and I am here for your support too! Let’s definitely keep in touch. Nort and zoloft together may be an idea since that girl who wrote that xoJane piece feels good taking that combo! I’m trying to see what the lowest dose is of meds that might help me enough since I realize I might need to take this stuff long-term and want it to be as safe as possible.

At one point, I was on nort at 10mg for a week by itself (otherwise I’ve been on doses of topa and nort together) and felt so good I went horseback riding again, which was huge for me. I really missed doing stuff like that I loved for these past three years with MAV. I might try to go a bit higher with the nort. to see if it helps more with my worst triggers.

Unfortunately yes lights for me too also are my big trigger for dizziness and migraine if it is a ton of stimuli - fluorescents and CFL lights are the worst, but natural light is OK.

That’s really interesting to hear about your diet. I should be better about the gluten. I’m not great at avoiding cakes! haha I don’t find stuff makes me too dizzy unless chocolate, caffeine, or citrus are involved…though I’m undecided about nuts and yogurt. Keep me posted about how things go with the dr. and if you start any new meds that seem to help a lot. Happy holidays! xx

P.S. My sister also gets migraines with dizziness (not as bad as mine-but she thinks gluten is her biggest trigger), and so does my mom - I agree that there might be some type of genetic link!

One more post that might be relevant to you, Candi, regarding amitriptyline and nortriptyline and visual symptoms - I noticed on this forum someone gave a link to this website regarding visual issues and how ami cured her of it: http://thosewithvisualsnow.yuku.com/reply/33337/Even-better#reply-33337

"Elavil is one of the SAFEST drugs on the market, my doctor said hes been treating people with HPPD with it since the 70s and has AMAZING RESULTS.

Go to your doctor and take it like this.
30 days on 10 mg.
30 days on 20 mg.
Then the third month on 30 mg.

continue after that for 4-6 months then wean off it every other day.

I didnt Believe it at first because it didnt see any results after 3 months, my doctor said i wouldnt see any results for 3 months anyway.

but then it happened, and since then i DO NOT SEE ANY SNOW DURING THE DAY. at night and in low light i see just a little and am slowly getting my night vision back. my doctor said it will continue to improve. THANK GOD FOR THIS AND FINDING THIS DRUG, I CAN FINALLY SAY AFTER HAVING VS FOR A YEAR I AM 100% VS FREE DURING THE DAY AND 90% GONE DURING NIGHT AND CONTINUE TO SEE IMPROVEMENT EVERY WEEK.

*** Tara’s Challenge: ***
Go to your doctor (or see Dr. Glaser at the Miami Basco Palmer eye Center)

Get elavil (also called amitriptyline) the generic I take, same thing.

Take 30 days on 10 mg.
30 days on 20 mg.
Then the third month on 30 mg. continue after that for 4-6 months then ween off it every other day after 100% cured)

He said that the longer you’ve had it, the longer it will take to go away but it will. i had it for 8 months. Consult Dr. Glaser in Miami if you have had it longer or the 30 mg doesnt work, he may say 40mg.

O did I mention I am also 100% “TINITUS FREEE” Only side effect is a wonderful, wonderful nights sleep, best i have ever slept in my life!!

ALSO NO LIGHT SENSITIVITY!!!
NO MORE BLUE FIELD ENTOPIC THING!! THE SKY IS THE SKY AGAIN!!

Please go now, look into it and contact your doctor. Reply so we can keep track of who is taking my Challenge.

God Bless.

We don’t have to live like this anymore! Good Luck, Tara "

Last link that might be useful if you haven’t seen it already on here! :slight_smile: (I haven’t gone up this high with nort. at any point - but might run this by the neurologist to see if he thinks it’s worth experimenting with along the lines of 10mg for one month, 20 for the second, 30 for a third, and then going back down to 10…): Vertigo Tales and Tastes: S G Post: ANATOMY OF A BAD DAY - ER/ NORTRIPTYLINE; S G Post: Follow-up 11/23/15

Hi, Liv

Thank you so much for those links!! I’m going to show all of the different information to the neuro so I am armed with defense haha. It seems I always have to try to educate the doctors here because none know of this strange condition.

I really appreciate you sending the link to me about the visual snow. I am about 3 hours from the place she mentioned going to.

Where are you at in this world? I’m in Florida.

Xx

Hi Candi!

Yes it’s such a strange condition that doctors seem really uniformed about - which is shocking because there do seem to be quite a few people with this problem! It’s definitely not just anxiety. I don’t want to experiment with too many drugs that could make my problems worse, but nortriptyline seems to be doing good things for my balance and head pain even at a low dose. Topamax helps too but I just don’t know if the visuals I do see in the morning with that drug are worrisome, along with some other side effects I get. I may save that as my last resort for a while longer.

I think I’m going to try to stick with nort on its own along with avoiding dietary triggers. I’m based in the NYC area at the moment but looking for a new job that starts in August so not sure where I’ll be soon. It’s great you’re in FL because it seems like there are a lot of doctors in that state who know more about MAV - from the articles I’ve come across. Good luck with the appt! Let me know if you have success with a new med. I think amitriptyline or nortriptyline (nort is said to have less side effects) are great options. I’m just trying to watch my carb cravings on nort so I don’t gain weight! xx

P.S. Verapamil might also be an interesting drug to look into… Sounds like that has also been successful for some people on this forum.

I will let you know what I find out =) and you do the same. I’ve already been feeling like 1/2 the battle is done, just by knowing what the condition is called haha. All of the other diagnosis’ never made any sense, and now one does. I think it was more confusing for me because it took its sweet time coming on and just seemed to get worse every year.

Well, I hope for your sake that where ever your job takes you that it’s full of knowledgeable practitioners and you continue getting better.

Talk to you real soon xx

Oh and yes, the verapamil worked so well before but my blood pressure took a big hit lol. I am trying to drink lots of water with it right now. =)

Thanks, Candi! Yes, keep me posted! Nortriptlyine and verapamil seem very promising, and Topamax is one to try perhaps depending on what the dr. says.

Topa is one I’ve had a tough time with because the results are slower, but some people on this forum (who also struggled to stay with it) saw great results after a few months of sticking it out. It does remove some of my light sensitivity at 50mg.

Nort and topa can work together as they act on different axes of the migraine, I think, but nort does have a tendency to cause me to retain water - so I’m going to see if I can stick it out with topa for a few months at 50mg and improve so I don’t need the nort.

The most important thing is the dx of migraine assoc. vertigo, I agree - and getting the right doctor to help you through finding the best medication to solve the problem w/ the side effects you can cope with!

xx