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Lisa:
Thanks for the answer!
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And it will be posible to communicate also by mail.

Does your daughter mainly suffer from vomitting (CVS) or dizziness?

The first years my daughter vomitted for three days only in the mornings till noon.
Now she rarely vomits, and only on the first day.
Then she suffers from dizziness and headache.
Immitrex spray would take away the pain leaving her more dizzy.
My son rarely vomits and only feels dizzy.
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I suffered with re-occuring dizzy spells / headaches from about age 5 to 14. Every 3 months the epsiodes would come, last about a week and then go like clock work. I remeber the episodes vividly and to this day (age 45 now) I am worried that they will return. The first day of one I would be a little dizzy but could still do things. On day 2 the dizziness made me very sick at my stomache and if I walked around I would throwup. Day 3 and 4 I would basically be bed ridden especially during the day when it was light out. Day 5 and 6 it would start to do away and I would get to where I could walk around again with it but tolerate it. Day 7 I would return to normal again. Bright sunlight definitely made it worse. My mom took me to all sorts of specialists, etc. They tried putting me on all sorts of diets to see if I was allergic to something. I was subjected to many tests including MRI's and brainscans. Different medications were prescribed. Nothing ever worked. As I got older the episodes still happended but became tolerable. At about age 14 or so they stopped. Perhaps it was something that I outgrew but I have always been concerned. I never had touble in school as I was pretty much a straight "A" student all the way through college. In recent years I have had trouble with anxiety, depression, and episodes of anger. I am a very analytical person and I have been doing some research lately to try to determine if those childhood spells are somehow related to issues that I am dealing with today. I have 2 brothers and 1 sister and none of them had the dizzy spells. I really feel sorry for your daughter. I also remember my step-father saying he thought it was something that I faked to get attention which was so far from the truth. I was a very active child involved in sports, fishing, hunting, and other outdoor activities so when the spells occured it was very frustrating. I hope the doctors can help her. Her symptoms sound almost identical to what I had. I kind of think there was something under developed in my brain that finally corrected itself or there was a certain chemical that wasn't being emitted. I hope my story helps in some way.

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Some how I have 2 profile names I am listed under Fraustrated and DizzyProblem.
I posted something yesterday under DizzyProblem.

You just gave me chills. My daughter is fixing to be 14 year old. Her last dizzy spell was October 7, 20012. Over 5 months ago. So maybe she will out grow it just like you. Your story sounds so much like my daughter. She is also a straight A studnet. Thank God her step father has always believed her it was other people teachers and other adults that have not believed her. Which makes the sitituation worst. Thank you for replying. It gives us some hope that it is gone and also watch for things later in her life.
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That is so much how our son is.    sunlight and flurourescent lights are not good for him.   

 

Im hopping hgrow as out of it soon.   

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And we struggle to get drs to believe us as well.   It's so frustrating.  I even had one dr interrogate me as to whether I loved my children and loved them equally.   we have 4 children with my son who gets the dizzies being the second 

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We had a rough time with our son recently.   Granted we went 4.5 months without a major episode but still after starting the drug therapy we thought the long dizzy spells would stop.    We have just come out the other side of an 18.5 day one. (Last weekend).   I have the school on my back :(. 

 

Anyways this time along with the epilim we went to a chiropractor which involved laser acupuncture and a slight neck adjustment.   They also did an X-ray which showed not much at all which is a good thing but still another thing we can say its not.   On the Friday he was so sick.   I ended up getting a drug called nauseatil

 

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Sorry for the extra post.   he had 3 half tablets over the day and came good about mid morning saturday.   It's helped with the sick tummy and even relieved his dizziness.    

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Hello All,

I started this thread ages ago and your posts have helped me to know I am not alone.  I had never, ever heard of another person who went through this.  We live in California and we made the trip to New York to see Dr. Eviatar in New York (2007) (she authored the Cyclic Dizziness article many of you refer to on this thread).  Dr. Eviatar had us try Depakote but it didn't work.  She did not seem interested in helping us further.  

Katherine will be 20-years old in July.  She is due to be dizzy April 9th and is (as usual) having dizzy warnings.  I just wanted to quickly note that, for years, she has taken Zofran for the nausea and it really helps.  I have a long journal documenting her dizziness since 2002.  I am happy to share it, if you are interested.  Quick recap: She tells me that she lives with a baseline dizziness (she has always called it "normal dizziness").  She always has warning dizziness about a week before the actual attack.  The episodes last at least a week but seem to last longer than it used to . . . more like 10+ days.  The cycle count down begins with day one of her attack (we do not count the warning waves), then we can calendar the next attack to be 85-90 days . . . this has been going on twenty years, without fail.  BTW, I use

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 to predict the next episode.

I have noticed a couple of similarities with some of our kids and thought I'd note them for you:

Good Student:  Many parents talk about their dizzy kids being good students.  Katherine is a good student - 3.9 gpa in college

Left Handed:  I noticed UCLA is conducting a study for people who are suffering from CVS (cyclic vomiting syndrome is the only thing I can find that is also on a near perfect schedule between attacks) . . . the study questionnaire said the subject has to be right handed.  It made me wonder if this means anything.  Katherine is left-handed.

Premature Birth:  Katherine was a premie (32 weeks)

BYW, just as a point of interest, Katherine is a monozygotic twin (identical twin).  Her twin sister is also a good student, left handed, and a premie . . . yet, she has never experienced this awfulness. 

So much for my quick post to suggest Zofran for the nausea!

Jill

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I am so relieved in a sense to know that my daughter is not the only one that suffers from this.  She is 9 years old and the dizziness started when she was 4.  She gets it every 2 months and it last 4 to 5 days, usually the 2nd or 3rd day is the worst.  It's always worse in the mornings and usually by late afternoon or evening she feels fine but will wake up w/it the next day.  She has had this for 5 years now.  It was much worse when she was younger, waking up screaming, not being able to move and throwing up.  We have been to a neurologist, had cat scans done and they said it was childhood migraines but could not explain the constant cycle of every 2 months.  Nothing seems to help much at all.  She takes ibuprofen and soaks in a epsom salt bath.  My husband had read that magnesium helps so we have had her taking a magnesium pill every day for the last several months but I'm not sure that it helps any.  My daughter is not left handed, was not a premie and is not a twin.  Other than this she is in good health and she is a very good student.  She is in 3rd grade and a competitive gymnast, needless to say these dizzy spells disrupt her life and I would change places with her if only I could.  It is so hard to watch her go through it and there is nothing I can do.  She had described what she feels once as being very dizzy and her head much bigger and heavier than her body.  I have a 13 year old daughter also and she does not experience this.  I was happy to see that other people know what I am dealing with but very disappointed that no one has found anything to help. 

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We are having a rough time with our son.   he is now on day 23 :(.   I don't know what to do.    The dr has increased his epilim to 3 tabs a day.  We have run out of options for drugs to treat the symptoms.    he managed an hour of school the other week and 2 hours today but other then that he has been at home on the couch or at the drs

i am so desperate for an answer.  He can barely sleep due to the constant dizziness.   Nausea is now back as well.    

This time we tried acupuncture with no success

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As I read through these posts, I don't know if I should rejoice to find company in all this misery, or to cry because your kids (and loved ones), and families are suffering through years of what we are too. My daughter is almost 11 and has been experiencing episodes of what she describes as dizziness and "tilting" since she has been 4. She gets violently ill, experiences vertigo and vomits - sometimes too many times to count. 

In the past 4-5 weeks she was admitted twice to the hospital for stays of 4-5 days each time because she wasn't able to keep any food down and at times the vertigo was so severe she was clinging to her bed, screaming because she thought she was going to fall out of it. On the worst days any eye movement would make her vomit and she couldn't tolerate any motion. a car ride was impossible and even carrying her up the stairs was enough to make her sick. She would bump into the wall walking down the hall then eventually she lost the ability to climb stairs. She would  report that the stairs were collapsing on on themselves and she didn't know where to step. watching her body try to cope with something that was a basic task (she is a young competitive figure skater) was incredibly frightening. This was all happening at the same time as Chris Hadfield and the Russian astronauts were coming back to earth from the space station and the media was reporting on how they had to retrain their vestibular systems....it was as though she had lost control of all vestibular functioning and was having to do the same thing. We have an extraordinary occupational therapist who took a course on the visual/ocular/vestibular triad at this time just to learn more about how to help out daughter and we started visual, listening and physical therapies similar to those the astronauts used to try to settle her out. 

For years we attributed the nausea and vomiting to a nasty case of G I reflux, though meds like Zantac did little to settle her. We kept her away from the usual trigger fools - caffeine, anything fried, chocolate, candy, processed meat, msg, peppermint, citrus, gum.....it did seem that if she went to a party and ate pizza, or a hot dog, she would ALWAYS get sick, so she learned to regulate herself. 

We also thought the visual tilting and dizziness was because of an eye condition (she has Browne's syndrome in one eye), but numerous appointments with ophthalmologists and a neuro ophthalmologist come back that her eyes are healthy even though convergence is sometimes and issue and she has worn glasses for 3 years - until recently. 

She had a bad attack of whatever this is back in October which brought us to the kid's hospital and started a long string of outpatient visits to various clinics. This last attack (mid may) however landed her in the hospital. In about 4 weeks she has lost almost 15% of her body weight because she just can't keep food down. Even now that we are back home, the only thing she can seem to tolerate are Arrowroot cookies and apple juice - and not even all the time. 

At this point we are out of our minds and ready to take her anywhere that might provide answers. We had a paediatrician at the hospital prescribe a a drug to be used to HOPEFULLY prevent vestibular migraines. She was to start right away. When we noticed that the side effects were the same as the symptoms she presents with we asked how do we know if she is having an attack or a drug reaction....the answer is ...I guess we have to hope it looks a little different.....not good enough!

THEN we saw out ENT who said she can't take this drug until she is out of the acute phase and especially while we are still testing to figure out what's going on. He isn't convinced of the vestibular migraine diagnosis because this had been going on for more than 3 weeks. 

The genetics doctor is looking for an ataxis (SCA31). Rare but there is a drug treatment, we are told. This test will take a bit of time.

Her ENG test indicates a 37% defect in the left vestibular nerve back in November. This test was just repeated last week and we await the results Monday- but the technician said it looks like a similar result this time. She also had another MRI friday. The doctor had asked for contrast dye to be used but the technician said it wasn't necessary. If we get to the hospital Monday and find out the dye was actually necessary I just might explode. 

As I read through these posts I am overwhelmed by the supportive community that exists - that strangers are willing to reach out and share and that such a site is able to exist. Being the parent of a child who suffers like this is excruciating and more frustrating than words can express at times and I know those of you who share in this exhausting journey must feel the same sense of isolation and profound worry. 

 

 

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My daughter who is now 9 years old stuffers from what has been diagnosed as proximal benign vertigo of childhood ... It now occurs about every three months to the day .... She has vertigo and mild frontal, occipital pain. The pain resolves with Motrin but the vertigo comes and goes for the next three to four days in the morning.  Any information or resource you have would be much appreciated. 

Concerned Mom in Ohio

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I just read your email regarding you daughter .... I cannot believe the similarities in both the signs and symptoms as well as the nonchalance of the healthcare givers .... have you made any progress in finding out what is going on?

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And we are back again already :(.  He only made it 5.5 weeks this.   He has been home a week.  Day 7 today.    Today was a bad day.   He tried his best to go to school but the school rang after 2 hours.    Not good.   Has thrown up a few times.    Took him back to the gp. She is not happy with how he is

little back bit,   We saw an ent last week who said we don't need an ent but we need a neurologist.  So referral was sent off last Friday.    Today referral was resent as they had lost the first one.     I am hoping,the neuro can give us some answers

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200 mg OF MAGNESIUM+200 MG of B2 have helped my son. He gets much lighter attacks since taking these additives.
You have to try for a few months to see if it helps at all.

My daughter takes only the B2 which has helped. When she stopped the attack became worse agin. She doen't like the magnesium.
I am planning on upping to 400 mg of each according to Johns Hopkins hospital advice.
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