It is such good news that you have finally found a helpful doctor and the correct medication. That is not an easy task and many of us have been through just such a frustrating journey. You definitely had severe symptoms and it is great to hear that life is once again worth living. Are you still strict with the diet, limiting stressful activities, etc.? Will you always be on a maintenance dose or will you eventually taper off completely?
Hi Amy, your story sounds a bit similar to mine. I’ve spent the last nearly 11 months of this constant disequilibrium, not being able to drive, or work (I can only last short periods on a computer before my vision blurs and swims about) and struggling to look after two kids, whilst relying on my husband to drive me around and help out around the house as I’ve often been too dizzy to even be able to keep the house tidy.
That said, I have had significant improvement in my disequilibrium/dizziness over the last couple of months. I am still on 50mg of Topamax daily, which I think is helping, however the major thing that has improved things for me is clinical physio, using the Dean Watson Headache Approach/technique.
Before having the physio treatment of this specialised technique I’d spent the previous couple of months walking into the walls like a pin-ball machine, or creeping/feeling my way down walls two-handed, and I was visably rocking and swaying back and forth when I attempted to sit or stand still. The day after the first treatment I wasn’t swaying anymore and I could walk a straight line again, and I improved a little bit more after each of the next few treatments too. It was a dramatic and pretty much immediate improvement. Funnily enough just now I read Nim’s comment above about the same thing, but I don’t recall having seen/read it last time I looked on here. My C2 vertabrae was, in fact, sticking out quite badly to the right, so what Nim say’s in her comment makes perfect sense to me.
Whilst the Watson technique physio hasn’t been enough on it’s own to completely still my disequilibrium, it’s taken it from probably an 8 or 9/10 to about a 3 or 4/10…so while i still can’t quite drive or work yet, I can clean the house, take the kids to the park, and ocassionally brave the bus if I need to. Basically it’s drastically improved my quality of life, and given me back some much needed hope as I was starting to think it was hopeless.
So i highly reccommend giving it a go if you can find someone in your area that’s trained in it. I’ve been told that if you contact their main office they can often advise if there’s someone near you that’s completed the training, so that could be worth a go;
I’m planning to try titrating up to 100mg of topamax next to see if that’ll be the final piece of the puzzle for me - just gotta get my neurologist to approve the change!
Hi … You have given me a lot of hope . Can you plz tell me which neuro you went to in Canada. I have vertigo 24/ 7. It’s been 6 months . If your doc is in Toronto I can try and get a referral
Your MAV symptoms - everything you describe - sounds identical to my experience, including the sudden onset vertigo and fluorescent light sensitivity. I’m starting topomax this month. Tonight is my second night of 50mg topomax. It seems to help already with looking at my computer backlight and functioning in the office under fluorescents. I feel less constantly in motion and in disequilibrium.
My concern is also titrating upwards slowly enough that I can continue my full time job without having too many side effects. I may need 200mg like you since my symptoms are that severe and my case seems so similar to yours.
Finding a supportive neurologist seems to be the most important thing, as you mention - I meet my neurologist in Dec. so I will see whether she supports me in going higher with topomax. I hope so if 50mg/day doesn’t get rid of most of my symptoms over the next few months (I’ve had these symptoms for almost three years, every day).
I was wondering whether you still feel better at 200mg/day of topomax and how you divide the doses (what time at night and in the morning do you take those doses)? Do you have any other tips for staying well on the medicine - such as how much water to drink? Any advice would be much appreciated!
yes I still have my MAV under control with 200mg of Topamax. I have tried to lower the dose and the dizziness returns so I intend to stay on this dose for a long term basis. My MAV was so severe that I may never come off and I have discussed this with my neurologist. I take a split dose with 100mg in the morning and 100mg in the evening (the morning dose is very early - about 4:00am because I find the drug sedating even after all these years. The sedation wears off after a few hours.)
I avoid kidney stones by drinking at least one liter of water a day. Topamax is by no means a perfect drug. I have had issues with blood work. My serum bicarbonate has to be monitored now because I am at risk for metabolic acidosis. I have developed another odd side effect which is the inability to sweat. In the summer months or exercising I am at risk for severe overheating. At a cognitive level I am not what I used to be prior to taking Topamax. When writing sentences the words are in the wrong order and I repeat words or sentences. I have word finding and attention problems. I have advanced science degrees and I do not think I could have done research or written a thesis while on Topamax. I also have severe acid reflux.
You may never have any of the above side side effects. Don’t let my experience deter you. I am extremely medication sensitive (I failed with nortriptyline, amitriptyline, Cymbalta, neurontin) so the fact that I can stay on a drug is amazing.
With that said, I will remain on Topamax and I live in fear that one day it will stop working. Despite the negative features of the drug nothing compares to the torture that I endured when my MAV was full blown. I still find it unbelievable that I can go into a large shopping mall without nearly passing out from vertigo. I was a prisoner with MAV. Topamax has given me freedom to live my life. - Lisa
Thank you so very much for your reply and testimonial about your continuing experience with Topomax. It is a relief to hear that it helps with your symptoms, since they are exactly the same as mine it sounds like, and I’ve been struggling with them for three years unmedicated until recently when I saw a neurologist, who diagnosed me with MAV and gave me Topomax.
I started it at 25mg, went up to 50, and it definitely seemed to help with the feeling of disequilibrium, ear cracking and other strange nerve issues that are going on with me in my head. However, at this dose, hasn’t cut my light sensitivity when I’m under strong fluorescent lights (in malls, houses with CFL lights, supermarkets, offices, etc.) I think I will also need to titrate to a higher dose. I’m 30, so it’s hard to imagine being on a maintenance drug, but thank you so much for your advice about how to stay well on it.
My only concern and additional question is that I have some vision abnormalities since being on 50mg - the eye stuff comes in the morning mostly, with some trailing light after light sources and blurriness. I was concerned by the side effects listed regarding sudden onset glaucoma. I had an eye exam an my eyes seem OK so far, but it’s making me anxious still.
I was just wondering whether you had any vision changes on Topomax? The tracers I get and blurry vision mostly is early in the morning just after I wake up, but it gets better over the course of the day. Did you notice any of that when you started the drug??
Thank you again for your advice. I hope I can get my life back too!
yes when I started Topamax I did have strange visual changes. I had blurred vision and I saw “stars”. This lasted for a couple of months then went away. I forgot to mention that I also had a stage at higher doses when I had very weak legs and severe pain in my leg joints. I found other people on the internet that reported this side effect (I usually go to epilepsy forums for Topamax information). Again, this went away. I never did have the tingling or the weight loss.
My disequilibrium did not suddenly disappear. It was a gradual process. As I got better my neurologist told me to challenge myself and go into complex environments that I had been avoiding (like the big malls). I did not want to do this at first because I had a huge vertigo attack in a mall and got trapped in one for several hours (I was so dizzy all I could do was sit motionless in the food court). The ear crackling was the first symptom to go for me. The last was being able to walk on a shiny patterned floor (like floor tiles in a mall) with lots of people coming at me. When my MAV was bad I would nearly fall over in that situation.
Hang in there. It will get better - Lisa
Thank you so much for your message! I really appreciate the encouragement, since you know how hard this is. I’ve actually stayed in a full time job with this, so it’s been really tough when I’d get vertigo in settings like groceries, at restaurants/cafes/bars, in my office with coworkers, etc. and not let anyone know I felt like I was about to fall. I’ve also had to stop walking when I get the worst vertigo and try to get out of a place…I know what you mean about being trapped in spaces with lots of fluorescents. My first sign it’s going to get bad is crackling ears (usually my left most of all) too!
My onset sounds exactly like yours too - all of a sudden, I felt extreme vertigo in a fluorescent-lit library at university and had all this head pressure, and then the MAV fluorescent light sensitivity and disequilibrium (including a sensitivity to low barometric pressure), hasn’t let up since then. It must be the flicker that overly excites our nerves with MAV and Topomax helps calm them down?
Regarding the vision things, thanks so much for the reassurance that some of these things disappear once you settle into the drug. I had exactly the same thing regarding the vision changes at the start - blurred vision and seeing “stars” too, mostly in the morning since I take my dose at night, I guess. Hopefully that will go away!
My last question is what titration schedule you used the second time when you were successful in going up higher?
I’m actually going to have to restart the Topomax at 25mg tonight because I go worried about the vision changes and went off it (despite going to an eye dr. and him saying my pressure was fine). I’d gotten up to 50mg, but now I guess I have to start over in acclimating to it. Thank you again for your advice!! I’m so grateful.
my titration schedule may be different because I am so medication sensitive. I had to titrate very slowly. I had a horrible time getting to 75mg and I had to back down a few times and then try again. My neurologist suggested not rushing Topamax if one is having problems with it and stay at each level (I used 25mg tablets) for a couple of months to see the response (apparently Topamax works slowly).If all your MAV symptoms are gone at that level then that dose may be the right one for you. I have read the advice of other doctors on the internet and they push increases every two weeks and I could not have managed. Maybe you can titrate more quickly than I could.
Once I got to to 100mg I found the Topamax easier to take.
I am so medication sensitive that I cannot have brand substitution. I don’t take brand name Topamax but generic Topiramate (it is cheaper). When I started taking Topiramate I began using the Mylan product. I get very dizzy if the Mylan drug is substituted with one from another pharmaceutical company. My neurologist said that his patients with epilepsy often have negative responses to anticonvulsant brand switches as well. - Lisa
Again, thank you for all of your replies!! It makes such a difference. It’s so hard figuring this out and I really appreciate your advice. Topomax is a tough drug, but I actually tried nortripyline and had a much worse reaction. Topomax was the first drug to still some of the disequilibrium and cut a bit of the light sensitivity, which was very exciting, but then I panicked about the vision stuff because I had been reading up all that. I’m just overly cautious perhaps!
I will see how I’m doing in titrating on a slightly faster schedule - probably every three weeks, rather than two, since I realize this stuff probably takes a while to really start acting on the nerves to calm them down. If I feel like my body isn’t responding well, I’ll slow down for sure.
That’s also very interesting about the brand substitution issue. I’m also on generic, since it’s cheaper, and my brand is Zydus (ZD on the pill). I am taking them also in 25mg pills. I’ll try to get Zydus from now on if possible (perhaps by staying with the same pharmacy).
My very final question would be when you take your doses? Do you take it with food - and split it in 2 doses (100mg each). I guess it should be 12 hours apart once I get to higher doses that I’ll have to split?
Thanks again - I really can’t believe how similar our MAV was (still is for me!)
I get up early in the morning so I take my morning dose early . The morning dose is at 4:00am (5:00am on weekends). I take the evening dose about 5:00pm. The dose is split evenly between morning and evening. I take it with some food because I find that it burns my stomach. I have had terrible acid reflux from the Topamax and I cannot take anything for it because all of the prescribed medication has given me a migraine. If I am late in taking my Topamax I find that I start to get very weird feeling.
I have noticed that caffeine in excess can wipe out the efficacy of Topamax so I have to limit myself to one cup. If I have more than one cup (or one cup of strong Starbucks) I feel dizzy. Not a good feeling! - Lisa
Thanks again for this helpful comment. I will probably end up being exactly like you with the dosage and have to take it with food. Unfortunately I am supposed to take a daily baby aspirin according to my normal dr., but that’s not ideal given that’s also supposed to cause stomach problems! Oh well! I just want to feel better and MAV is the worst thing ever, so I’m definitely going back on Topomax and will hope for the best with titrating upwards to find the dose that eliminates at least most of the horrible sensations I get under fluorescents. I have to do my job. I hope that you continue to have the symptoms in remission!
Keep in mind that you may not have my side effects. My doctor keeps reminding me that I always have extreme reactions to every drug that I take. My stomach problems became apparent when I was on 200mg for some time. It is now made worse by a potent blood thinner medication that I have to take for blood clots - so Topamax is not entirely to blame.
I know what it is like working while titrating the Topamax. I am so sorry you are experiencing this. I used to go to work while holding onto the office walls. The fluorescent lights were so bright that I was constantly swaying and feeling like I was falling into the floor (on a bad day I couldn’t even stand at the photocopier). I thought that I would die during PowerPoint presentations that had moving graphics (and clapping hands that made me motion sick). I was so ill with MAV under the lights that I could barely walk from one office cubicle to another (the carpet also had a pattern which added to the misery). Those were the worst years of my life. I could write a thesis on what I experienced daily with MAV. Only someone who suffers from it would understand. Topamax was my “magic pill” - Lisa
Thank you again for the encouragement. It really is the most horrible experience that no one can understand unless they too have had it. I’m really sorry you had to go through it too. I definitely think these past few years have been the hardest of my life for sure.
I’m so glad to have come across this forum and to have found a neurologist who started me on Topomax rather than some other drug. Nortriptyline didn’t work for me at all. One of your original posts helped me get up the courage to start taking Topomax to begin with, so I really appreciate that you came back to the forum to let people know that it is possible to get better.
Just starting Topomax at 25mg again (after having stopped it because I was worried about the starring in my vision at night) has helped me feel less off balance. I think the vision things that are going on are pretty normal because I had my eyes checked.
I hope that Topomax will be my magic pill too - my job is in a very highly lit fluorescent office and I have to be at a computer all day. I also have issues with patterns on the ground and crowds of people when they are walking towards/past me. The worst thing for me though, by far, are CFL lights and having to watch backlit presentation screens when it’s also in a fluorescent-lit room.
If there is any positive at all about this experience, it made me much more conscious of my health and has shown me what’s important in life. It’s made me care less about what people think!
Thanks again for your advice. I am hugely appreciative.
feel free to write me during your titration if you have any questions. I was not on the internet for several months because I had some other health issues to deal with but things are going better now. It often helps to have others to talk to if something “weird” happens when you increase the Topamax dose - Lisa
Thank you so much! I am really appreciative. I’m going to take it slow just to be cautious. I think every 3 weeks I will go up by 25mg. I’ll see how I feel at 100mg. If I’m still having the fluorescent light problems, I’ll go higher towards 200mg too. Sounds like our MAV cases are almost identical. I’ll be in touch if something strange happens! Have a wonderful rest of the week, and I’m very glad to hear that you’re doing better from the other health issues!
Sorry to keep bothering you! I just have two last questions about topiramate and how you got better – my first question is whether you follow any anti-migraine diet aside from not drinking too much coffee? I find that citric acid and dark chocolate are trigger foods for worse head pressure and dizziness for me, but I can’t figure out if there are other ones I should avoid.
My second question is whether you would be able to share with me your approximate regimen (if you remember!) for titrating the topiramate because every time I go up to 50mg I don’t feel like I can handle it, but the topiramate has definitely already helped with my ear crackling and ear fullness and has made me less dizzy overall.
Did you go up by a full 25mg every time you titrated or did you cut the pills in half? I was curious how many weeks you gave for each level of the dosage so that your body could adjust to the new level. I would be very appreciative for your advice about titrating since I’m also very sensitive to drugs.
Although I’m a bit better, I’m still very sensitive to fluorescents and screens and have a rocking sensation when the MAV gets bad, so I definitely think I need to go higher on topiramate and stick it out to see the full benefits after a few months.
Thank you again for all your help!!
Good to hear from you. I have always had problems with citric acid and migraines, even prior to MAV. Orange juice is a horrible trigger for me so I avoid it. I don’t eat many sweets or chocolate because things taste weird now from Topamax. Other triggers are any drinks with artificial sweetener or foods with MSG. Snap peas make me dizzy. I have several diagnosed food allergies so I have a very restricted diet anyway.
A trigger not related to food is very loud music. I still feel rather weird - not dizzy but strange and not normal even at 200 mg of Topamax. For example, shopping in an H&M store. The feeling is hard to explain. I have gone to music concerts and I have felt fine. But clothing stores with people around me and loud music and I feel weird trying to focus on the racks of clothes (not dizzy or rocking but odd). I guess MAV is always there in the background. My doctor gave me 0.25 mg of Clonazepam to help in these situations.
In terms of titration I tried to cut the 25 mg in half at first but it was moving too slowly so I eventually moved up by 25 mg. I felt just awful from the Topamax, and having to work on top of it didn’t help but I was inspired by the success of others on this forum. My time at each stage varied on how I felt. I spent the longest at 25 mg and 50 mg (several weeks). After 75 mg, I was able to tolerate Topamax much better. It took me six months to get to 100 mg. After 100 mg I had minimal issues.
If you have any other questions let me know! - Lisa
Thank you so much for these insights! I find that orange juice makes me super dizzy too - and exactly the same on artificial flavorings too and MSG. Any soup with instant vegetable bouillon in it usually has MSG, I’ve learned. Soy protein bars also seem to have some type of MSG substance that makes me dizzy and sometimes have a full on migraine. I’m not sure about soy milk, but I am trying to stay away from soy since I don’t know.
It seems like we have almost identical cases of MAV, so I’m hoping for the best with topamax at higher doses. It’s already made a big difference in my quality of life by diminishing some of the ear pressure and crackling and slightly making it easier for me to work at my computer and be under fluorescents at the same time (and I can drive again without being so anxious). I just think I need to go slow with the initial titration and ride out the side effects like you say. It’s just so hard being at work with the titration because I do panic that I won’t be feeling well, but perhaps I can get a little clonazepam to help with those situations when I see my neurologist.
My main trigger situations are in restaurants with loud noise and strangely placed lights, when I have to be eating and focusing a conversation with someone all at the same time, and at conference type settings with work screens and overhead lights that shine directly onto the top of my head. The worst is when someone has a laptop open next to to me at an event like that - that’s a surefire recipe for me to feel like I’m about to fall over!
I also used to have problems in stores and malls, but less so now that I’m on 25mg of topamax. I find that a bit of nortriptyline mixed in (10mg/night) has also helped a bit in muting my response to the lights etc. but I think I may stop nort. soon to see how the topamax is doing on its own. I have started to go to the gym again, which is progress! It’s so interesting you note the loud music as a trigger - that’s also a trigger for me too. I went to a concert a few weeks ago (I don’t know what I was thinking!) and it was too loud and by the time I got home I felt like my whole head was being pushed forward, and I could barely walk.
Thankfully sleep helps my nerves calm down and get back to normal by morning, but then the cycle of dizziness and head pressure repeats itself as my nerves get aggravated during the day by fluorescent lights, etc. I’m hoping that topamax will have the daytime effect of nighttime sleep all the time on my nerves.
This is such a insanely difficult illness to deal with, but I think it does give us MAV sufferers a sense of how strong we can be to get through it - and how lucky it is that we live in a time when there are at least some medical solutions. I bet people got sick with this a lot time ago and there were few drugs that could help. On the other hand, there weren’t fluorescent lights and computers to aggravate the symptoms! Unfortunately I do think many neurologists don’t really understand MAV that well. I hope that more doctors can get better understanding of it.
I hope you’re doing well and thank you again - let’s keep in touch! I’ll let you know when I hit the dosage of topamax that seems right for me.
P.S. Hi Lisa, One more follow-up question! Sorry to keep asking so many.
You aren’t allergic to dairy or gluten are you?
I haven’t had any allergy tests, but I was kind of wondering if an underlying allergy had contributed to my onset of MAV.