Has anyone had these symptoms?

[OakParkOwlets]

Not looking for medical advice, but my 11yo daughter has been struggling with some symptoms and no answer has been found yet so wondering if this sounded familiar enough to anyone to give me some other paths to think about.

As best as I can get out of her, suddenly she will start feeling like her vision is going in and out of focus, and she starts feeling dizzy and like she can't move her body, has a sense of disreality and sometimes she feels sick to her stomach.  No headache, no muscle spasms, no specific relation to food.  Sometimes her pupils look large.  Meclizine (an over the counter motion sickness med) helps resolve the symptoms but I think it could be placebo effect because they also slowly go away without it.

Her labs are clear, she doesn't have POTS, her vision has been checked and other than needing a prescription change is fine.  Her doctor thinks its related to hormones around her cycle and rapid metabolism necessitating more food and water or fluid in the ears from environmental allergies.

A lot of the "attacks" seem to be brought on in large brightly lit rooms with a lot of activity going on (Walmart type, conference centers, dance studio), so I'm curious if there could be a sensory overload or panic attack type of thing going on even though she says she doesn't feel nervous or her heart beating fast.  Last time it happened she was more concerned that she was being a bother to others because she needed assistance coming to find me (she was in a class and I was waiting in the car) and it is making her hesitant to go anywhere alone.

[bookbard]

What about epilepsy or migraines? 

[alysee]

Ask about POTS. 

[Katy]

I had similar symptoms as a child, though I would also sometimes spike a fever and have a great deal of sinus drainage from one side only. As a kid I was diagnosed with sinus infections a lot.  I developed migraines and cluster headaches as an adult. The cluster headaches spike a fever.

I'm much better now and no longer have a neurologist, but I remember being told that the standard pediatric advice at the time was to drink a Mountain Dew for caffeine and take 800 mg of Ibuprofen. Today I'd be concerned about that volume of corn syrup and probably look for a real sugar or diet version, depending on if it seemed hormonal or not. ETA: if it seems connected to a certain part of her menstrual cycle and only happens a few days a month I'd care less about corn syrup. If it happened every day at 10 am & 1 pm, and sometimes at 6 pm, there is NO chance I'd give a kid that much corn syrup.

Rapidly drinking cold water also can help people with cluster headaches.

A low histamine diet also helped me a lot. That means avoiding ALL pork, limiting any aged proteins like cheese, beef, and either eating beans (limiting soy), or flash-frozen chicken and fish. I also limit bananas in bad allergy seasons and for a while I needed to limit tomatoes.

ETA2: Yes I would try treating this with soda & advil even without pain. It's OTC, will cause no harm, and if she is fighting a migraine without pain it means a vein in her head is expanding in diameter and pressing onto her trigeminal nerve, affecting vision. The caffeine is a vasoconstrictor and will suck that vein back in, and the Advil is an anti-inflammatory and will help too.

Edited September 30, 2023 by Katy

[OakParkOwlets]

45 minutes ago, bookbard said:

What about epilepsy or migraines? 

Her doctor didn't seem to think so but we will be taking her back to another appointment if it keeps flaring up.  I'm not super familiar with epilepsy experiences, but she is completely aware during and doesn't have any tiredness after, although the dizziness takes a while to wear off.  My husband has suggested taking her to the ER next time she experiences these symptoms as that's probably the only time we might actual have them witness by medical provider.

Edited September 30, 2023 by OakParkOwlets

[OakParkOwlets]

23 minutes ago, alysee said:

Ask about POTS. 

She has been through the tests and it didn't show anything.  We can't seem to find anything to trigger an attack in office either.

[Eos]

Sounds like a non-traditional migraine.  At about age 10 my youngest had maybe 6 months of what was ultimately termed a stomach migraine.  She would have intense cramps and would look like she was literally in labor, despite not yet having her cycles.  She would also throw up and talked about not feeling real while it was happening.  One time we had to take her to the ER for dehydration and they tested her for every possible infection or organ problem, were about to order a CT scan when our family doc peeked in and said oh that's a stomach migraine. Apparently migraines can manifest in lots of odd ways that are not headache related.  She never had a headache, ever, just lots of weird symptoms.  She stopped having them when her true cycles began.

[OakParkOwlets]

1 minute ago, Eos said:

Sounds like a non-traditional migraine.  At about age 10 my youngest had maybe 6 months of what was ultimately termed a stomach migraine.  She would have intense cramps and would look like she was literally in labor, despite not yet having her cycles.  She would also throw up and talked about not feeling real while it was happening.  One time we had to take her to the ER for dehydration and they tested her for every possible infection or organ problem, were about to order a CT scan when our family doc peeked in and said oh that's a stomach migraine. Apparently migraines can manifest in lots of odd ways that are not headache related.  She never had a headache, ever, just lots of weird symptoms.  She stopped having them when her true cycles began.

She did complain of some stomach pain about 20 minutes before the last one happened.

[Katy]

1 minute ago, OakParkOwlets said:

She did complain of some stomach pain about 20 minutes before the last one happened.

Maybe try just the advil alone one time and with caffeine another time, because abdominal migraine can be made worse by caffeine, even if it helps migraines in the head: https://www.yalemedicine.org/conditions/abdominal-migraine

[Ottakee]

I would ask for a referral to a neurologist.    Symptoms sound similar to my daughters migra-seizures.

[KidsHappen]

Sounds similar to some of my migraines. I have full blown auras but the headaches can range anywhere from non existent to somewhat painful. The distorted vision and nausea are the worst symptoms. 

[Melanie32]

If it happened when she’s being somewhat active it could be a need to drink more water. If my daughter played too hard when she was young or if she works out now when she is a bit dehydrated she will get dizzy, her vision will blur and even almost pass out. 
 

I used to think it was low blood sugar but over time I realized it happened when she hasn’t had enough water before being active. 

 

[MercyA]

Yes, DD and I have both had similar symptoms. They tend to occur when we are tired, overstimulated, and in need of food or drink.

I haven't had them as often since I've been on medication for OCD. 

DD started having them during puberty, I believe.

I think they result from a combination of physical and mental factors.

I think your doctor is right on with his theories.

[kbutton]

She’s about the right age for migraines.

I second the advice about trying ibuprofen as soon as symptoms start and staying hydrated.

My son’s started at age 4 (more typical for boys), and he had some vision changes first, then nausea, then the headache. If he caught the vision changes and took ibuprofen, it aborted the process. I have several presentations for migraine (some are milder but more common), and ibuprofen right away helps. If I’m having hormonal ones, caffeine seems to work better (I get them in batches and would prefer not to take ibuprofen multiple days in a row).

[EKS]

What you're describing sounds very similar to my husband's seizures.

[gardenmom5]

have you done a food journal, and also including her cycle for her symptoms?
Some people do react to florescent lights.  do all those brightly lit rooms have them?  or do any of them have other types of lighting?

has she seen any specialists, or just her own GP?  (aside from an eye dr.  was it an optometrist or an ophthalmologist?)

[OakParkOwlets]

12 hours ago, gardenmom5 said:

have you done a food journal, and also including her cycle for her symptoms?
Some people do react to florescent lights.  do all those brightly lit rooms have them?  or do any of them have other types of lighting?

has she seen any specialists, or just her own GP?  (aside from an eye dr.  was it an optometrist or an ophthalmologist?)

We have not kept a journal but that is a good idea.  I was thinking about the florescent lights too.  Her own GP is sort of on a watch and wait plan since it seemed like it was getting better and she didn't have problems for a few months, but now that its back again and bothering her I'm seeing what my next steps should be.

Edited October 1, 2023 by OakParkOwlets

[Acadie]

Mast cell issues? Much more common than people realize, and can be a challenge to find a knowledgeable practitioner. Hormonal fluctuations can impact symptoms. 
 

Looks very different depending on the person and can impact just about any organ system. 
 

 

[Ausmumof3]

That sounds kind of like what I sometimes get with migraine 

[Condessa]

Get an MRI of her brain just to be sure.

I don't want to frighten you; it's probably not, probably just the migraine-type issues like everyone else is saying.  But there's no harm in checking, and in the very unlikely possibility of a brain tumor, you need to know as soon as possible.

[WendyLady]

One of my girls experienced similar symptoms and would also faint. She described visual problems, dizziness, and stomach pain. It was really scary to see! We went to different specialists and it eventually lead to a series of appointments with a heart doctor in the big city, who ran a series of tests. She wore a holter monitor for a couple of weeks and she did have a concerning rhythm when she experienced a near pass out. That was concerning, but the big recommendation from the heart specialists was for her to drink a large amount of water (2-4 water bottles) each morning before doing anything else. He said that it is not related to blood sugar and the food she had eaten (which is what we had been told by a previous doctor.) He said that it is fairly common with youth between 9 and 16 years old and drinking a large amount of water made a real difference in blood volume which prevented the symptoms of passing out. It seemed too simple, but it made a huge difference. 

Hopefully you will find a simple solution for your daughter. I'm obviously not a doctor and its a good idea to seek out advice from your medical provider, but perhaps while you are waiting, increase her water and see if that helps at all. 

[Melanie32]

2 hours ago, WendyLady said:

One of my girls experienced similar symptoms and would also faint. She described visual problems, dizziness, and stomach pain. It was really scary to see! We went to different specialists and it eventually lead to a series of appointments with a heart doctor in the big city, who ran a series of tests. She wore a holter monitor for a couple of weeks and she did have a concerning rhythm when she experienced a near pass out. That was concerning, but the big recommendation from the heart specialists was for her to drink a large amount of water (2-4 water bottles) each morning before doing anything else. He said that it is not related to blood sugar and the food she had eaten (which is what we had been told by a previous doctor.) He said that it is fairly common with youth between 9 and 16 years old and drinking a large amount of water made a real difference in blood volume which prevented the symptoms of passing out. It seemed too simple, but it made a huge difference. 

Hopefully you will find a simple solution for your daughter. I'm obviously not a doctor and its a good idea to seek out advice from your medical provider, but perhaps while you are waiting, increase her water and see if that helps at all. 

This is what I came across when I looked into my daughter’s symptoms. Now she makes sure to drink plenty of water in the mornings and hasn’t had any more issues.

[klmama]

One of my dc with similar symptoms was told by the pediatrician to increase water and salt intake, even though the POTS test was negative.  It helped.   

[kbutton]

5 hours ago, WendyLady said:

One of my girls experienced similar symptoms and would also faint. She described visual problems, dizziness, and stomach pain. It was really scary to see! We went to different specialists and it eventually lead to a series of appointments with a heart doctor in the big city, who ran a series of tests. She wore a holter monitor for a couple of weeks and she did have a concerning rhythm when she experienced a near pass out. That was concerning, but the big recommendation from the heart specialists was for her to drink a large amount of water (2-4 water bottles) each morning before doing anything else. He said that it is not related to blood sugar and the food she had eaten (which is what we had been told by a previous doctor.) He said that it is fairly common with youth between 9 and 16 years old and drinking a large amount of water made a real difference in blood volume which prevented the symptoms of passing out. It seemed too simple, but it made a huge difference. 

My brother had a stretch of passing out after growing a whole bunch in a short period of time. It was kind of scary, but they ruled out anything sinister.

As @klmama suggested, some salt (or electrolytes) with the water is a good idea.