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Please help, need opinions about my son and his dizzy spells

  • By BILL

    My name is Christine and this is my dad’s account.
    We have a issue that no doctor can resolve at this point.

    I have a 5yr old son named Christian. When Christian was about 2 years old he started having these dizzy spells, he would wake up in the morning and not want to walk and complain that he is dizzy.

    Over the years we have noticed a pattern; the dizzy spells come every 3 months and 2 to 3 days before the dizzy spell he will wake up around 12am and throw up until about 7am, then like clock work 2 to 3 days later he’ll wake up dizzy.

    When this first happened when he was about 2 years old his doctor ordered a blood test and also an EKG, when those came back normal and he continued having dizzy spells his doctor referred us to a neurologist.
    Over the past 3 years he has had 3 or 4 EEG’s done, even one while he was having a dizzy spell, he also had a 24 hour EEG done in the hospital, he has had his eyes checked, and he was referred to a ear nose and throat doctor which tested his hearing and tested him for vertigo and inner ear problems; all of the tests done to him have come up completely normal.
    Up until the dizzy spells he did have a couple medical issues. Pretty much from the time he was born he has had acid reflux which was treated with a couple different acid medications and when he was about 6 months old he was diagnosed with hyptonia; he was physically delayed by a few months, he didn’t sit up on his own till 9 months, he didn’t crawl till 11 months and didn’t walk till 14 months. The hyptonia was treated with physical therapy and that ended when he started walking. So those are the only 2 issues he’s had, other than that he is a healthy boy.
    Christian’s neurologist came up with an “exclusionary diagnoses” of migraines, and she put him on Antivert.
    Last time he was sick all night long was Aug22nd and on Aug 25th he had a dizzy spell, and the pattern continues every 3 months.
    Well Monday morning he woke up around 12am and threw up all night long, and today he woke up dizzy and it’s lasted all day yet again. After his spell in Aug the doctor prescribed him a new medication to try when he as the spells. When he has the dizzy spell I am suppose to give him 1/2 a pill of Antivert and if it continues give him the other half, also Motrin or Tylenol can be given. So I gave him half a pill, about an hour later no help so I gave him Motrin, and about an hour after that he was still dizzy so I gave him the other half of Antivert and still no relief.

    Now it’s hard to get what exactly he feels like because he is only 5. But when he wakes up he will not walk without the support of a wall, a hand, or some kind of object; he also grabs the top of his nose near his eye balls like it hurts and he also is very sensitive to light, but he has no nausea during the dizzy spell.
    It is very frustrating to have him stay up all night throwing up and 3 days later have one of these dizzy spells. I am not happy with the “exclusionary diagnoses” of migraines, and am not happy that the medication he was given didn’t help one bit. It is also very confusing that the pattern is every 3 months he is sick all night then 3 days later a dizzy spell comes.

    I have had many people say its vertigo (but he was tested, and vertigo only every 3 months just doesn’t seem logical), someone mentioned parasites, someone said migraines as well and someone mentioned allergies.
    Allergies is the only thing he hasn’t been tested for.
    So we are seeking to get a second opinion from another neurologist that will keep looking for a cause and not give us an “exclusionary diagnoses”.

    But my dad found this website, so I figured that I would post what’s going on and see if anyone has any similar things happen to themselves or their child.
    Opinions and comments would greatly be appreciated.

    Thank you,
    Christine

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  • By Nancy Harris Bonk Moderator

    Hi Christine,

    I’m so sorry to hear your son is having such a rough time. During these periods of dizziness, I can’t imagine how awful he must feel. Let me see if there is anything I can do to help.

    It is frustrating to see our children in pain and not be able to do anything for them. The first thing that come to mind is a condition called Cyclic Vomiting Syndrome or CVS. Children and adults who have CVS experience repeated periods of nausea, dizziness, vomiting, not wanting to walk or talk and other symptoms. Like migraine, CVS is a diagnosis of exclusion which means there is no test or image study that can diagnose it. However, a diagnosis can be made by a doctor who does a complete neurological exam, discusses symptoms, and goes over family history.

    I’m sure the doctors you son has seen are fine, but sometimes doctors need to look outside the box so to speak. I’m not suggesting your son has CVS, rather providing you information you may want to share with your son’s doctor. Here are a few links that may help; http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/889/viewFullReport and http://cvsaonline.org/what-is-cvs/.

    I hope this helps,
    Nancy

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    • By tine8969

      Hello all,

      This is Christine again, I actually forgot about this post up until the most recent comment!

      I got my son into a new neurology specialist here in Florida at Nemours.
      He was diagnosed with migraine variant cyclic syndrome (which is close to CVS as Nancy mentioned previously). The doctor has played with some medication and we did finally find one that worked for him to prevent the part 2 of the spell where he is dizzy; the medication is called Rizatriptan Benzoate.

      My son is now 9, almost 10, and the spells have pretty much stayed consistent throughout the years, only difference is the morning before part 1 hits (the night he throws up all night) he wakes up with an upset tummy and throws up 1 to 2 times, then is fine for the day. When this day (we call it a pre-warning day) comes I give him the medication every 8 hours, the next day will be part 1 and I continue the meds every 8 hours (except for when he is throwing up at night) and then the following day same dose; typically the day part 2 hits I give him one pill in the morning and that is it.

      Now the medication has finally stopped the part 2 of his spell, but does nothing for part 1 where he is throwing up all night. We have tried a few suppositories that didn’t work but now that he is older we probably won’t go that route.

      The doctor says that with males it is possible this syndrome may last until he hits puberty, it may turn into a normal migraine at that point or completely go away. So I still haven’t gotten an answer to how long he will experience this.

      Thanks for everyone’s help with this post!

      Best Regards,
      Christine

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    • By Nancy Harris Bonk Moderator

      Hi Christine.

      Thank you for the update – it’s great to hear from you.

      We really don’t have a solid answer to when and/or if your son will stop having these attacks. The connection between CVS and migraine disease isn’t totally clear. But we do know they may be connected in some manner.

      I wish I had a better answer for you. I did want to say how lucky your son is you’re a great advocate for him!

      Nancy

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  • By AmyRB

    I feel for you. I have a daughter who had a round of vertigo when she was 16 that lasted 2 and 1/2 months. She could sometimes barely get out of bed to go to the bathroom. It would be hard for a 5 year old to describe.
    Nothing really showed up on tests for my daughter either. She finally got some relief through physical therapy and by seeing someone who specializes in dizziness/balance disorders.

    You might want to check out the Vestibular Disorders Organization (vestibular.org) as well which has information on dizziness as well as vestibular migraine.

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  • By kimanna

    I know this is an old post but we are going through the exact same thing. I hope you see this message and please let me know how your son is going? Did you figure it out? Has it gone away now? Thanks.

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    • By tine8969

      Kimanna,

      I got my son into a new neurology specialist here in Florida at Nemours.
      He was diagnosed with migraine variant cyclic syndrome (which is close to CVS as Nancy mentioned previously). The doctor has played with some medication and we did finally find one that worked for him to prevent the part 2 of the spell where he is dizzy; the medication is called Rizatriptan Benzoate.

      My son is now 9, almost 10, and the spells have pretty much stayed consistent throughout the years, only difference is the morning before part 1 hits (the night he throws up all night) he wakes up with an upset tummy and throws up 1 to 2 times, then is fine for the day. When this day (we call it a pre-warning day) comes I give him the medication every 8 hours, the next day will be part 1 and I continue the meds every 8 hours (except for when he is throwing up at night) and then the following day same dose; typically the day part 2 hits I give him one pill in the morning and that is it.

      Now the medication has finally stopped the part 2 of his spell, but does nothing for part 1 where he is throwing up all night. We have tried a few suppositories that didn’t work but now that he is older we probably won’t go that route.

      The doctor says that with males it is possible this syndrome may last until he hits puberty, it may turn into a normal migraine at that point or completely go away. So I still haven’t gotten an answer to how long he will experience this.

      Best Regards,
      Christine

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    • By kimanna

      Thankyou for the reply, I thought it was a long shot being your thread was from 2014.

      Our son is 4 and has had this for approx 2 years. It strikes every 10-13 weeks. The first morning when it happens he looks unwell in the eyes, has light sensitivity and vomits a few times then generally has a nap. He wakes up almost fine, he says he’s not 100% but can’t put into words what he means yet. Has normal appetite but happy to rest. Sometimes that’s it and the episode is over or sometimes for the following 3 or 4 days he wakes with light sensitivity still and has moments of what he calls dizzy. He will be happily playing, walking around then squint his eyes and say he’s dizzy few a few seconds. After that is over he tells me he is 100%, so whatever he is feeling he gone. In between these episodes he is completely thriving and healthy, not any sicknesses not even colds. It has me absolutely baffled and continually trying to research, as you would understand. We have been seeing a paed and initially she diagnosed migraine and recommended panadol. The panadol didn’t stop the dizzy episodes and obviously we can’t use it to stop the onset as there’s no warning. Now the paed has said it doesn’t sound like migraines because he shouldn’t have the follow on ‘dizzy’ spells a few days after the attack. She has recommended a neurologist and a scan and blood tests. I will do some more research on CVS. (I put all that info above in case anyone has any other advice) thankyou! Kim

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    • By kimanna

      Three months ago I decided to try some things. So I took him off gluten and eggs. I also take him to the Chiro every second week and a Myotherapist every alternate week. He had torticollis as a newborn so I thought perhaps something is related there. (It had delayed his milestones slightly)

      Even with trying this he still had a episode. I will keep trying them for a bit longer though. I am considering dairy free or a full elimination diet.

      Can a blood test still detect celiac if he hasn’t had gluten for 3 months?

      Thanks for your time.
      Kim

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    • By skipper

      Kim, I am no expert on these things. I just learned the hard way, and I want others to be aware of the same things that I’ve learned. Mention to your doctor about the eliminations that you are doing, and try to work with the doc, even if the doc knows nothing about it. You can help him/her. As far as the celiac blood test after 3 months, I cannot know. Test him now, if you are going to continue with gluten-free. If it is a gluten or wheat intolerance, or something else, and not traditional celiac, the test will be negative anyway.
      Both myself and another relative did not get sick when we were kids. We didn’t react like other children, we felt tired when everyone else was getting that cold or virus going around. I was treated like a liar if I complained about not feeling well!! It is clearly possible that your son is simply very sturdy and not getting sick at all, but take careful note when the other kids are coming down with something, does your child get fussy or seem tired? I would definitely bring this up with your doc when discussing the upcoming testing. Best of luck and keep us posted. I, too, think this thread will be helpful for others who are out there searching.

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  • By tine8969

    celiac disease is related to gluten and the symptoms do not relate to my sons, so he has never been tested for that. He also has not be tested for thyroid disease.

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    • By skipper

      Hi Tine8969, If my questions seemed short-sighted, I apologize. My head hurts. I read every word of this thread, and I am sorry for what both of your families are going through. Let’s pray the problem is only temporary and your son will grow out of it. But the reason I asked is this: Wheat is a known trigger for migraine. Wheat products are in _nearly everything_ that kids eat. Long story short, I found out the cause of my “vomiting migraines” nearly three decades after they started. If someone would have hinted at this when I was a child, and I had eliminated wheat from my diet long ago, it would have spared me a lot of pain and frustration and loss. Maybe I wouldn’t even have thyroid disease or colitis.

      Gluten intolerance is a thing in itself, and celiac is another. However, there is such a thing as Atypical Celiac disease and neurological symptoms can be the only symptom. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3395124/

      Eliminating wheat and wheat products from one’s diet is an easy way to see if it is causing problems. If a person stops eating wheat/gluten, their body stops making antibodies to it. Insignificant amount of antibodies will give a negative on the celiac test. So, before eliminating wheat from one’s diet, it pays to get tested for celiac disease. It is a simple blood test.

      My previous post, asking questions, was simply out of a desire to help, and I am wishing the best for your son, and the other mother’s child.

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    • By Nancy Harris Bonk Moderator

      Hi skipper,

      Thank you for sharing your experiences with us. Hearing from others who share similar issues is validating and makes us feel less isolated and is much appreciated.

      I hope to hear more from you!
      Nancy

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