My son who is 14 was recently diagnosed with Vestibular Migraines. He is missing a ton of school. And when he does make it he only lasts a class or two because the bright lights and noise make his symptoms much worse and he can’t take it. We have an apt in a month with a vestibular neurologist but am lost at what to do in the mean time. He also suffers from anxiety and depression and missing classes and having these migraines have intensified both of those. My question to you guys is -is their light at the end of the tunnel? Will he deal with these his entire life? Scared for my son. Thanks!!
Hey there,
I’m very sorry to hear about your son. I think stress brings MAV on. Just reassure him that there are many drugs that can help. I have had MAV for three years almost. It’s very tough but I’ve not stopped working and it’s possible to persevere through it–that said, if I were younger (14 like your son) I would definitely go into a line of work with less fluorescents and computer screens.
Is he interested in farming or being a farrier or something outdoors, such as being a park ranger or wilderness guide? Not only is that the most healthy line of work since it’s active, it’s definitely the best work for MAV since people with this condition are intensely sensitive to fluorescent light. I had noise sensitivity at the beginning but it’s gotten better. For two years I tried everything in the book to solve it naturally through diet but that didn’t work. Caffeine though does make the MAV worse-that definitely something I can correlate.
Since the autumn, I have tried a lot of drugs, and can report on what helped me but obviously everyone is different and everyone responds to drugs differently. Nortriptyline (even just 10mg) really helped my symptoms, but I got a rapid heart beat on it (rare side effect).
Topamax is supposed to be great if you can be patient with it titrating super slowly up to 50-100mg or even higher per day (max 200mg it seems) but I got some eye side effects that were too strange to keep going on it (that’s also unusual- but I have a sulfa sensitivity), and now I’m on gabapentin. Depakote can also help people with MAV. It seems like the anti-seizure drugs are best, and avoid the ones that are addictive like klonopin or anti-anxiety drugs.
I’m only at 200mg 3x/day of gaba which is low but I get too sedated when I go higher (that’s an issue at work, driving, etc.) Gabapentin is excellent and has enabled me to function pretty normally so far.
Some lights and computer screens still get to me but that takes a LOT of lights. Unfortunately my line of work has a lot of lights and I’m too old and far in my career to just give it all up. MAV definitely changes your life though and the best thing you can do for your son I think is to give him a lot of love, and encouragement, and see which drug works best for him without intrusive side effects. Gabapentin has had virtually no side effects for me and it’s very well tolerated in comparison to other drugs.
I am totally fine on gabapentin in natural light. I’m going to see whether I can titrate up higher during a vacation time when it won’t make me too sedated to function in the office and get used to a higher dose - I’m hoping that 300mg 3x a day will fully suppress my symptoms even under strong fluorescents.
Good luck to your son and you! It will get better. I am a highly functioning 30 year old and Gabapentin is helping a lot. But the main thing is to consider since he is so young what type of lifestyle he would like to have–if I could have chosen earlier I would have chosen a career in which I could be in natural light more.
Liv
P.S. This may seem like a random question, but has your son ever had chickenpox or did he have the chickenpox vaccine? I am trying to figure out whether MAV is caused by the reemergence of a virus.
Thank you so much for your story and info!! He never had the chickenpox but did have the chickenpox vaccine. Today was a really bad day for him as he was having trouble seeing and walking with the vertigo. It is just heartbreaking and not the way I want my son to remember his teen years. We are going to try skyping into his classes instead of physically being there under the harsh lighting and see if that helps. I feel his anxiety will decrease a bit if we can get him some normalcy in the school department. I know he is getting very worried and anxious about getting so far behind. He goes to a private Catholic school so they do not have homebound services but are definitely willing to work with us and are 110% behind him. Thank you again for your feedback!!
That’s very interesting that he had the vaccine. Hmm. I had actual chickenpox. Anyway, I was kind of wondering if the onset of my MAV was like a Ramsay-Hunt episode without the rash–since a lot of my cranial nerves seem affected. That is caused by the reactivation of the chickenpox virus in the cranial nerves. But I could be wrong. I’m not a neurologist and doctors scoff at me when I propose this.
My illness that started the nightmare off was sudden and it happened when I was under a lot of stress. I’ve recovered a lot both through he passage of time, good nutrition (see that he eats enough B12 either in supplement form or through animal products, and Vitamin D supplementation). Omega-3s are also good and try to avoid caffeine, as it really exacerbates vertigo/head pressure.
The most important thing is to find a supportive doctor who can help your son trial medications and see what is the best for him with the least side effects. You have to ride out some side effects, and everything has something…but gabapentin for me works the best to reduce the dizziness and the head pressure and other symptoms, including light sensitivity. It’s not perfect though so I may need to go higher in dose.
I’ve been horseback riding again (natural light though!) on gabapentin and it enables me to drive and go out and be mostly normal, and I function better at work (under fluorescents and in front of a computer). It’s great that he has a doctor already. He should be feeling better soon. It took me at least 2 years to get a diagnosis, and I was living overseas for part of it in a country where they just took my blood to try to find out what was wrong, which only made me dizzier!! Prayer has also helped me. I feel like everything happens for a reason, whatever that is. Best wishes, Liv
Hi there mom & 14 year old,
After i got my diagnosis, i was set on the right track. I read the MAV survival guide here and the ten commandments, and those have helped me greatly.
There are no easy solutions, or maybe for a happy few.
But there are numerous ways to be and feel much better then when still in the dark and undiagnosed.
So do not despair! Together you two can beat this!
That and the fact that life may change and he may have long good periods or maybe a phase in life where it doesnt show up again, or not by far as much as it does right now.
Lotsa love!
Lijne
Are you on a medication, Lijne?
I am thinking about going back on topamax because of how tired I am on gabapentin. I think I struggled w/ the initial side effects on topamax so much that I didn’t give it enough of a chance…it does seem to have the highest rate of success at doses higher than 50mg on this forum. And it’s nice that it doesn’t put me to sleep… or cause me to gain weight.
I’d love to get your advice as well if you have any! Thank you, Liv
Hi Liv85,
No i am not on medications. I am doing all the lifestyle stuff and using riboflavin and Coq10 but no “meds”.
My route has been co-planned with my neuro-oto and is due to the specific circumstances i was and am in (complex case, i am sorry). I cannot say i would recommend everyone to walk the same route. Especially the lifestyle stuff is hard work and i am having severe restrictions albeit doing significantly better. Working is out of the question for me, and for many people falling out of work is out of the question for them.
But yes i am impressed by how far i have come on those measures alone.
The best advice is allready in your own post really:
“The most important thing is to find a supportive doctor who can help you(r son) trial medications…”
And i made an effort to find a good one (neuro-oto). I travel to the other side of our country for him. It is worth it imho.
Hi Lijne, Thank you for your reply! It’s good to hear you are managing without medications, and honestly sometimes I wish I could do that too but the problem is that I have to work so that I need a medication to cut my light sensitivity in offices and conference settings. I am going to try topamax again because that was recommended by others on here as the best route for many on this forum. I liked gabapentin and it worked for me at a very low dose (100-200mg 3x day) but the ironic part is that even gabapentin had bad side effects… really sedating and bloating for me. No med is perfect obviously, but topamax I hope will at least enable me to be awake enough to work. x
Hi,
So sorry to hear that you son is suffering with vestibular migraine. I, too, have a fourteen year old son who has doing his best to manage his headaches and related vertigo for the past three and a half years. Despite medication, he is very symptomatic. His episodes are so frequent that he now experiences chronic vertigo. Last school year, he missed so much school from September through February that he was in danger of not moving on to high school. We have worked hard with a pain management group to discover ways to function despite not feeling well. He gets acupuncture, practices biofeedback, and just plain distracts himself ignoring his pain signals. It has been hard, but worth it. He has learned how to go to school even when he feels so miserable he can’t stand unassisted – last year he used a walker or a wheelchair, this year he has a service dog that provides balance. Staying connected to his friends and having a goal have helped his morale tremendously. While we still puruse pharmaceutical options to prevent or mitigate his vertiginous migraines, working with a pain management group that emphasizes return to function has made the largest difference in his life. I am not sure where you are located, but Boston Children’s Hospital and The Mayo Clinic both have good websites where you can read about pedicatric pain management programs. Best of luck. I know how hard it is to parent a teenager with this health problem.
Is there any way you can get your son on a low dose of topamax so he gets better? What about seeing a neurologist to get him in 25mg for three weeks and then up to 50mg for a few months? That’s supposed to really help people on this forum regain some normalcy. That was the titration schedule my neurologist originally recommended (I didn’t listen and went too fast because I felt I really needed to see results, but didn’t realize I needed to be patient with that drug until I found this forum- I didn’t adjust well last time with too many sx, but I may go back on and titrate slower). I’ve suffered for three yrs with MAV so I know how it is. People do recover though on the proper med apparently… the one that’s best for them. Liv
Your son is a true warrior!! <3
Right now the neuro just put him on supplements - magnesium, CoQ10, and Riboflavin and he is going to vestibular therapy. Neither of these things are working right now he is only feeling worse. Going to another neuro this week and hoping they will put him on something as the poor kid is suffering.
Good luck! I also tried the natural route with all those supplements and the dietary modifications. Diet helps to some degree but honestly medication is the only route to getting back to normalcy and living life and enjoying things again. I can say this as someone with VM. Especially as he’s so young I think he’s got to get on a medicine at a low enough dose that it cuts the symptoms for him but does not carry long-term risks. Seems like topamax at like 50mg (if he stays well hydrated) would be very low risk for a long-term thing if he titrates up slowly to that, (my neurologist said that dose has extremely low risk for kidney stones etc) but a neurologist can advise best. I’ve seen several. Find the one who is best and takes you and your son seriously. These symptoms are not anxiety and they require medication just like an epileptic requires medication (just a lower dose than an epileptic). Migrainers with VM are on a spectrum of having abnormal/too much electrical brain activity- it’s like a storm and that’s the problem. The vestibular (balance nerve) is being activated too much by the nerve stem or something whenever it encounters lights/sounds/external stimuli. It definitely is possible to dampen down the nerve messaging with the medicine and get things back close to a normal state. xx
PS The drug I’m currently on with great results (but not at a higher dose which cancels out the benefits with its own form of dizziness as a side effect for me anyway…everyone is different and I’m highly sensitive to meds) is gabapentin. It’s an anti-seizure drug like topamax but is different from it so for people with sulfa allergies like me perhaps it’s a safer route instead of topamax. There is also depakote which is another anti-seizure drug but I think that has lot of sx sometimes. My neurologist claimed that topamax was OK for me even with a sulfa allergy but I got a lot of very odd eye sx with it - eye tracers, eye pain lots of nasal congestion, sore throat, depression which are all symptoms of an allergy. It’s tempting to use topamax because it does not cause water retention and is not sedating though. No drug is perfect but I’m happy with gabapentin so far. I’m at at 100-200 mg 3 x a day (you have to take it three times a day because of the short half-life of the drug so it wears off quickly).
I was diagnosed with MAV at 13 its definitely a terrible experience!! It took my highschool diploma from me. And I could barely find any accomodations.
I recommend that as far as education goes you either switch to an online school and
As for the brightness of being on the computer go into your accessibility section and use High contrast to turn your computer back grounds black instead of white & change your text colours to something like blue or grey instead of white
As for your browser download “Dark Reader” it’ll turn everything black. He might be able to get his diploma with a modified computer in online school.
Some online schools offer socialization and clubs etc. Its generally a much less stressful experience than normal school So give it a try.
If that doesn’t work out enroll him in a GED program as soon as you can.