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One more thing:
I connected with two mothers, both of whom succeeded with Amitriptyline.
Those are the only two that seemed to have outdone the dizziness.
I understand it's a difficcult drug.
My daughter tried Uramox with no help, and couldn't tolerate Topomax, she went on a gluten free diet - no big difference, though she sais she felt better. She cut out milk products because she always had stomach pains, but no difference to the cyclic migrain.
Anyway anyone with dizziness should also look at the MAV forum, though nobody there seems to have a cyclic problem as most of us here.
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Hi everyone!  I see that this post is filled with many variations of this illness.  I wanted to share my experience and maybe provide a little hope for those who are going through the same thing.

We don't know when when my first episode was but my mom first noticed something was wrong when I was a toddler.  I wouldn't walk and would lay on the floor and say "I can't walk".   I guess I was nauseas, too.  At some point my mom began tracking my spells which would occur every 8 weeks (initially) but eventually settled at a constant every 13 weeks.  We could predict these episodes to the day.  

The first day, I would wake up dizzy.  I would lie in bed for a few moments and gradually work my way up and I would go on fine.  The next day would be a little worse and I would be dizzy for a few hours but I would have likely made it to school by lunch.  The next three or four days were the worst.  For most of the day I was unable to move.  Even the slightest movement might cause to get so terribly dizzy.  I was nauseas, too, but the dizziness was the worst for me.  It would be difficult to sit up, move my head, and when I did manage to walk somewhere (bathroom or living room) it was an ordeal.  After the worst of it, it would taper off, just as it came.  

When I was around 16 or 17 (I can't remember), I skipped an episode.  I wasn't aware at the time because it was my mom who kept track and she was scared to tell me until she was sure.  Then, 26 weeks later, as planned, I had my last episode.  Thank God.

Much of my childhood was spent sick and traveling from doctor to doctor with  no answers.  We used amytriptalene (however you spell it) and zofran but neither helped tremendously. It was just something we had to deal with and plan for.  Which, by the way, my teachers were always very skeptical when I asked for assignments ahead of time because I would be sick the next week.  

My only advice is to parents:  if your kid is experiencing this, don't push them thinking they can overcome it.  My parents are wonderful and always had my best interest in mind but they always wanted me to try and get through it.  And I would go to school knowing that I wasn't ready and I would end up either in a bathroom stall or laying my head on my desk or table for 15 minutes or so trying to get myself together because I had gotten so dizzy. It was horrible, HORRIBLE.  

Anyways, I am 27 now and it has been over ten years without having an episode.  

Also, it may be worth mentioning that during my adolescent years and only then I experienced about 5 or 6 full blown migraines.  Blurred vision, severe debilitating headache and nausea.  

Good luck to everyone!

 

 

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Thank you for sharing your experience and installing hope that my son will grow out of this.   Today marks day 12.  Poor kid is simply over it :(.   It's hard when your 9 yr old starts asking why him and you have no answers

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My daughter has Cyclical Vomiting Syndrome.   It started when she was around two and she would wake up and start vomiting every 20 minutes for 6 hrs.  She would be so dizzy she would need to drop her head to the ground for some relief.  She also complained that her head hurt (forehead area)  These episodes occurred around every 6 weeks and at first I thought she just got sick a lot.  She would usually sleep a bit when she stopped vomiting and when she awoke, she would be totally fine.  Her face would be extremely pale during each episode and she has extreme lethargy.  During 1st grade, the episodes tracked about every 2 months.  During a stressful 3rd grade, she started getting it more often.  Then in 4th grade the episodes started to change.  They became further spread out (3 months apart) but lasted multiple days.  (up to 5 days)  The vomiting just occurred in the beginning and sometimes  not at all.  The stabbing pains in her stomach and dizziness and headaches continued.  She is worse when she awakes and is feeling 90% better by the afternoon.  I don't know if your child has Cyclical Vomiting Syndrome, but it is an option to consider if your child's symptoms are cyclical, include vomiting, headache, stabbing stomach pains and dizziness.  Google CVSA for more information.  There is a specialist Dr. Li in Children's Hospital, Milwaukee WI.  We live in Chicago but are going there for consultation.  Good luck.  I know that this is extremely frustrating and quite hard to manage.  Hopefully, they will have it figured out to relieve this kids and adults of a terrible illness.

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I think my daughters episodes are linked to her hormones as she gets much more emotional the week before she is due to be ill. Just wondering whether you started taking the contraceptive pill around the time the episodes stopped??
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My son is 6 years old and has had cyclical vertigo for over three years. It comes every 8 wheels almost always to the day. We have had all the balance , hearing, allergy, cardiac testing and an MRI. His last dx was benign vertigo "probably" a migraine variant. We were told to push fluids and give him Benedryl, which we have not found to be helpful. His episodes last 3 days with day 2 being the worst. He usually vomits from nausea at least once or twice. Bright light bothers him and on day two, he cannot handle movement (TV, sitting, etc). It's miserable and we are missing school/work and he's missed parties, field trips, and play dates. Has anyone had any success with preventative treatments? I feel that People do think we are crazy when we say he has vertigo every 8 weeks because it's so rare. We need help.
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Hello. My daughter is 4 years old and she has been having these attacks since she was 2 years old. She has them like clock work- every 10 to 11 weeks.. As she has got to be older the episode have seemed to lighten up some. the attacks last about 24-48 hrs at the most. Worse in the mornings. We have had an EEG performed and that test from normal. We havent had a MRI yet, because the neurologist said since the EEG was normal there was no need for that test. He diagnosed her with Benign Paroxysmal Vertigo of Childhood. dr said she would eventually grow out of this but it could lead to migraines down the road. Anyone have any feedback???
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Hi, my daughter Melissa is 16 yrs old and also has been suffering with cyclical dizziness since the age of 3. She has also had many tests and the Neurologist has stated that she suffers from Vestibular Migraines, or Silent Migraines. She ends up in the hospital every 3 months from vomiting and dehydration. I wish someone could find a cure for these poor kids. As a Mother I am so frustrated with all the new technology that is out there that there has to be a cure. We saw a physical therapist who suggested we see a Neuro-Opthamologist. I had never heard of such a doctor. Well we have an appointment in mid January of 2015 and I will keep you all posted.

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Hi, I am so relieved to be reading your post! I am in the exact position that your daughter is in.. I started with my dizzy spells at the age of 7. They occur every 85 to 90 days and last for approximately one week. I can't work, drive or walk for the first 3 to 5 days and then it eases up. I am now 30 years old and nothing has changed. I've seem endless doctors, neurologists and vestibular specialists trying all medications with no help. Had anything helped your daughter thus far? The only consolation I can offer you with regards to worrying about your daughters future job situation is to be supportive. It's going to be tough and employers will judge you, but I managed to study to become a physical therapist and am now self employed. If you have any advice or new avenues that have helped - I would really appreciate the info!
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My son has been doing everything you guys mentioned since he was 17 months old, now he is five. His dizzy spells are 60-62 days apart, my question to all of you is, do your kids wake up first thing in the morning dizzy or can it hit them any time of day? My son has always woke up with them the day it is supposed to come!
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Does your daughter still have symptoms? Did the vitamins work? My son has had exactly the same symptoms since he was 2. He is now 14. I would love to try the supplements if they work. We had tried Topomax with no help.
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Hi my son is 6 & has been suffering all the same symptoms since he was 2.. Can mark on calender, last anywhere from 5-10 days.He too has had every test & has been diagnosed with bpcv. Dr said he should grow out of it. Originally Dr was so concerned but when tests were all fine it seems no one cares anymore. Its such a struggle & to watch your little one suffer and u cant fix them. He is on Toprimate and have also tried B2. Its sad to know there are others suffering but its also made me feel better finally hearing stories just like ours.I hope someone finds a cure....
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Hello all. My son is now 14 years old and has been suffering from "Cyclic Vertigo with predictable recurrence" since birth or at least thats what we think. first couple of years there was 12 weeks between the attacks and periods has slowly gotten longer and longer apart. Now we have 20 weeks between attacks. Allways the same pattern. He wakes up in the morning (often has the same dream) with heavy nausea and starts womitting every 30 min approx -- this lasts untill sometime in the evening and he gets a little better. 2. day he feels a bit better and starts taking fluids without throwing up. Rest of that day he slowly gets better. 3, 4 and 5 days better and better and then we wait for another 20 weeks. We are Danish and I can find no litterature about this condition and no one who knows anything. Its importent for all parents to feel like we can do some good - and now our son is starting to take interest in if this will ever pass. So obviously I would like to hear if anybody has any knowledge about what happens to these children later in life. It seems like at least some of them gets completely over it in their teenage year. Sorry for my english  

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My daughter has this same consition every 82 days.  We are currently in an episode that has lasted longer than usual.  She typical okay by day 7, we are on day 8 with no end in sight.  We have tried topamax with no result.  She hs had MRIs since she was 3 or 4 (She also has Neurofibromytosis 1 (NF1) so I am assuming this is a manifestation of this genetic condition.  All her specialist are stumped with the dizziness claiming it is caused by aytpical migraines.  Just wish I could figue something out as she misses about three weeks of school a year. 

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I am happy to read this as I have an 11 year old daughter who has had these exact symptoms/condition and have also tracked it since she was a toddler. She is currently trying Amitriptyline 20mg before bed. This medication has not helped and seemed to make her last episode longer I want to discontinue it and was looking for advice. I like your Mother never tell my daughter when she is due for her next episode in the hopes that it won't happen. Thank you for the parental advice.
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