The Vestibular Migraine Community

Does MAV get worse over time?


#1

Hi, I’m asking on behalf of my 13-yr old daughter. Three experts in their field believe her symptoms are migraine. Her most troubling is constant dizziness with the fatigue, of course. Since it started in March 2012, she feels her symptoms have been getting worse which seems to be reflected in her declining attendance at school and participation in other activities, such as cheerleading that she loves to do. I’m wondering if it’s common to feel that you’re deteriorating like this over time -10 months for her. I’d appreciate comments from anyone, as you are actually in the same boat…
Thanks,


#2

Hi Anne,

I feel so badly for your daugther, as I cannot image having this awful thing at 13! =0( MAV can def get worse over time if its not treated and if you dont stick to the migraine diet, if your under alot of stress & not getting enough sleep. Most people could tolerate 6 hours of sleep and then drink coffee to make up for it the next day. Someone with MAV would never be able to do this! Its a horrible condition, but once you learn the triggers and how to avoid them, life does get easier. Has your daughter started any medications yet? Once she gets a on med things may get a bit worse at first… but then things will get better when her body gets used to the medication. Its a long hard road, but in the end, things can and will go back to normal!

Lisa


#3

Hi Anne,
It must be heartbreaking for you seeing your daughter go through all the trauma & pain at such a young age & not being able to help her. I know you have posted before but can you update us as to who her doctors are and whether they are specialists in treating migraine & vertigo? Many neurologists can diagnose migraine but few have the expertise to treat the rarer Migraine Associated Vertigo. Your daughter is still very young but there are some preventative meds with minimal side effects which are used for children in cases that are chronic.
You say that they believe her symptoms are migraine - have you explored other options? Seen other specialists?
I hope you find an answer for her soon.
Barb


#4

Hi Anne

I am sorry to hear about your daughter.

I have had this dreaded thing since I was 15 and it hasn’t got any worse. However, I remember my attendance at school and at dance etc getting worse at one stage. Looking back I think it was more the anxiety that went with it, when it didn’t just ‘go away’ that decreased my ability to cope with the dizziness while at school. Nobody would have ever known I was anxious, I hid it well. I’m not saying the anxiety ‘caused the dizziness’, it certainly didn’t BUT it made it harder to cope with it.This thing wears you down. Mine is relatively unchanged and I am now 30, but I am only just starting meds. Many people get better much quicker. I have daily dizziness, dizzy spells and motion sensitivity in addition to vertigo attacks, always at the time of my period.

Even though I have struggled with it for many years and some periods have been easier than others, I have still led a full life. I figure skated at a national level (having to take breaks if the vertigo flared up) won gold at nationals and now I have a job in management of a national publically listed company. It has it challenges, but your daughter will get better, I assure you. The best thing you can do is make sure the dizziness doesn’t create anxiety and stop any social inclusion. That’s a part of the ride with Mav unfortunately.

I really do feel for your daughter. It struck a chord as I have been that young girl. I am happy to talk with her anytime if you ever feel the need.

Regards

Nicole.


#5

Thanks so much for your quick input. I’ll try to give you a shortened summary of my daughter’s history with this: On March 12th she woke up unable to go to school as she felt very nauseaous, had very sore throat, was achy, lightheaded, lethargic. She was off school for 4 days. Strep test on day 2 was negative. Took her to the doctor’s an additional 2 times in those first 2 weeks because she was dizzy, and then she told us that when she was looking across a room, everything looked tilted - and this is how she it still seeing everything. She went to track practice (wanted to try out for first time) and said her legs wouldn’t do what she told them, her knees kept giving way (altho’ they’d catch quickly again so she didnt’ fall), and she was dizzier because she was trying to run. Dr. said hadn’t recovered from being sick yet, and take it more slowly. At the end of the 2 weeks, Dr. basically said if I stopped asking her how she was feeling all the time, it may go away! Needless to say, we went to a different family dr.! She’s had blood test, brain MRI, seen cardio Dr., ENT, neuro, all of which was normal. Last May, local neuro. dr. of Children’s Hospital thought it was migraines, gave us supplements and had her try Imitrex. When the Imitrex was ineffective, they said it wasn’t migraines. We then went to Cleveland Clinic and started with pediatric ENT who did a CT scan of temporal bones. It showed that she has super thin bone on her right side and super thin on her left with maybe a small hole (dehiscence) so this led us to Superior Canal Dehiscence Syndrome (SCDS) which could produce the symtoms she has. (Altho’ she only has about one-half of the symptoms, there are other sufferers out there who also only have the balance related symptoms.) However, the dizziness dr. at Cleveland Clinic referred us to their Headache Clinic where we’re seeing a pediatric neurologist because about half the people who have SCDS don’t get symptoms. The neurologist started her on cyproheptadine (periactin) last August and it took til December to get up to full dose. It didn’t have any affect. I wanted to investigate the Superior Canal Dehiscence Syndrome (SDCS) further, found a support group website where I learned a lot and before Christmas we went to see 2 experts in the country at Johns Hopkins, Baltimore and Mass. Eye and Ear in Boston. They each redid a test Cleveland Clinic had done, but got normal results which to them says that my daughter’s symptoms are not coming from the SDCS. They each felt that the symptoms were migraineous. The Johns Hopkins dr. has written a good paper “Migraine - More Than a Headache”, and as David Buccholtz hails from Johns Hopkins they recommend following his diet. The Cleveland Clinic dr. had us try a diet last summer for 6 weeks and it didn’t make any difference, but it wasn’t as expansive as David Buchholtz’. So since just before Christmas my daughter has been on the migraine diet. Along with the diet, the Johns Hopkins dr. recommended the supplements so she is now taking B2, magnesium (altho’ I’m starting it gradually as we did it for a month last May and she felt sick to her stomach), COQ10. When we saw the Cleveland Clinic headache dr. again a couple of weeks ago he took her off the cyproheptadine and she has just started Topamax. Last summer, the dizziness dr. had her do Vestibular Rehabilitation Therapy but she was discharged after 6 sessions because her dizziness was already high enough that the therapist didn’t want to push it higher still with the exercises and my daughter said she felt it was getting worse during that time.

The Johns Hopkins dr. wants her to retake the test for the SCDS a year from now to be sure it is still normal. Her symptoms are continuous dizziness (no break from it) mainly rocking like a boat, she feels like she’s going to fall down altho’ never has, she has fatigue no matter how many hours she sleeps, she gets trembling hands and other muscles twitching intermittently, she can’t always find the right word she wants to say and forgets things she feels she should be able to remember, she feels unwell all the time, seems to have problems with her throat feeling like she’s getting sick and says she can’t swallow properly sometimes, she gets dizzier with physical exercise so doesn’t do much walking, has blurry vision upon waking (tho’ tells me this predates her symptoms) - usually clears in a couple of minutes, sometimes at other times has to work to get her eyes to focus. Our school is very understanding and did a 504 plan for her and she is keeping up with all the work but doesn’t go to school much now. She is struggling with the being out of the loop with friends at school. She does things with friends outside school (if it’s something she can do). She says it’s too hard when you feel sick, feel like you’re going to fall over, are so tired you want to cry and it’s hard to think, - and then she’s supposed to have conversations with people!

I’ve read on this website about the 2 people who have recently been diagnosed with Lyme Disease (after being told for some time they had MAV) so that made me read more about that. And now I feel I would like to be able to cross that off the list. We live in Ohio, and both my children and husband have found ticks on them at different times in the past. We were not aware of my daughter being bitten right before her symptoms started or of the typical rash, but having read more, it seems as if it could have been many weeks or months before symptoms begin. And she did seem to be sick, have some kind of assumed virus when this all started. Having said that, I should add that the day before her symptoms started, she was in a parade with the marching band where it was unusually warm with bright sunshine, and they had layers on under full uniform, couldn’t eat lunch, probably got dehydrated and were on their feet for about 4 hours. Knowing I have migraines, the Johns Hopkins dr. thought the parade conditions were typical migraine triggers.

The only think I’ll say about the Cleveland Clinic headache dr. we’re seeing is that he is a pediatric neurologist. If I search on their website for a dr. specializing in migraine associated dizziness, his name doesn’t come up. Three other dr.s come up but they all state they treat adults only. I’m wondering if I should call and see if they would see my daughter or if they would work with the pediatric dr., who actually told us that he wasn’t convinced that chronic symptoms like this were migraine related. He is going to be talking with the dr. we saw at Johns Hopkins and Mass. Eye and Ear, so that is good. Right now I’m pleased to be trying the Topamax - I did see somewhere on this site that it is one of the med.s listed for use with vestibular migraines.

Well, that’s pretty long but thanks for listening! As you can imagine, it’s hard having to watch my daughter go thru’ this, make her go to school when she really feels like she can’t handle it, and hard to find the right words when after 10 months she’s saying that she can’t take any more of it, and doesn’t like being her anymore. Oh, we do have her seeing a counselor regularly so we can keep track of how she’s doing emotionally/how she’s thinking, etc…I can imagine how she’s feeling and what she tells me makes perfect sense…


#6

Hello Anne. Your daughter is really having a tough time and my sympathy goes out to her and to you.

If your daughter has chronic migraine then, as I understand it, the classic sequence of prodrome-aura-migraine-postdrome get jumbled.

-Wexan


#7

Hi Anne

Sorry your daughter is suffering. I wouldn’t look at mal dembark etc- it sounds like a sure fire case of MAV. Whether that’s caused by Lyme is something you may like to cross off the list if you can.

Mav seems to have a strong hormonal link and at 15, I guess hormones are readjusting/settling/all over the shop.

As for the scsd maybe someone else can chime in here as I’m sure there are a few people with this problem around.

What is good is that she’s trying topamax- so many people here have done well on this drug. Has she tried a tricyclic antidepressant at all?

What about lifestyle modifications such as going to bed and getting up at the same time? Avoiding stress?

Xx


#8

Hi Anne
Thank you for updating us with your post - you are certainly following all avenues to help your daughter and as MAVLisa said “Never Give Up” - there is an answer out there. Unfortunately, it can take a long time & much suffering before getting the right diagnosis & treatment. It would be definitely worth a call to one of the MAV doctors (who only treat adults) to see if they would work with your daughter’s doctor and maybe even for you to book an appt with one of them to discuss your daughters symptoms. Following up the Lyme possibility could also be worth doing - is Ohio in a Lyme prevalent area? Many people have tick bites without being aware of the fact & symptoms showing months later which can also mimic MAV.
Hope the Topamax helps her - I have just started and hoping this med will do the trick for me!
Barb


#9

Glad to see shes starting topamax! Its helped me so much! Let me know if I can be of any help! Ive lived through the side effects, the ups and downs and the dose changes :slight_smile:

Lisa


#10

I do hope your daughter is feeling better and has found some relief. I would like to know how she got on with Topamax? Did it help at all and if so we’re there any side effects?
Best wishes