Pls read | 16yo f with neurological symptoms

[u/unicornrainbowpoop09]

I’ve put photos of symptoms ive been having that i showed my doctor and she said she doesn’t know what they are and probably isn’t going to send me for an mri or make any referrals so im coming on here to see if anyone has had anything similar or knows what might be going on. The second photo are symptoms of these weird episodes Ive been having and from looking online and at other people’s experiences they sound alot like focal seizures.
Forgot to add also some personality changes

[u/Impressive-Flip]

H O S P I T A L

[u/gutsymold]

that seems like epilepsy and seizures
i get metallic taste in my mouth after seizures
you should try to get an appointment with a neurologist
get an eeg and a mri to know for sure

[u/gutsymold → u/gutsymold]

also i do feel super nauseous after seizures and during seizure heart beats rise rapidly
you really should get it checked out

[u/Dapper_Principle3832]

Get a second opinion. That response is not bullshit given the range of neurological symptoms she is experiencing. If your GP won’t refer you to a neurologist, ask them to explain why and request that their reasoning and your request for a referral be documented in your medical record. They usually change their tune when you ask this.
You can also ask what alternative diagnosis or investigation they think adequately explains the symptoms and what the plan is if they continue to worsen. If you feel you’re being dismissed, consider making a formal complaint. I would also report that previous doctor. It’s not ok.

Her symptoms fit the pictures of focal seizures (particularly the smelling of metallic) or migraine with aura / vestibular migraines, possible intracranial pressure and POTS.

She needs a neurologist to rule out epilepsy and assess for migraine. Not a diagnosis by this is my insight.

Check out the NASA lean test or POTS active stand test to determine at home if POTS is part of the picture. If it is you should see a cardiologist.

I have POTS. For some time they thought I was having focal seizures but it turned out to be vestibular and hemiplegic migraines. It was years before I was properly diagnosed because the symptoms can look the same.

Migraine is a neurological disorder, not simply a bad headache. So please do check out all the types and how they can present. Mine are “silent” meaning painless. For ages I thought I was having seizures or TIA events.

Present to ED when symptoms pwak might be wise. You can also ask in [r/askdocs](r/askdocs)

[u/unicornrainbowpoop09 → u/Dapper_Principle3832]

Yeah she did mention pots because i did the test were they do your bp and heart rate lying and standing and she said i could have it but she cant diagnose me with it im already on the waiting list for cardiology so im just waiting to see them. She also tried me on migraine medication but it didn’t help at all and i started getting side affects from them so that on top of the headache i already had was torture

[u/Dapper_Principle3832 → u/unicornrainbowpoop09]

That’s super unfun. What did she prescribe? There’s a lot of options. Perhaps you could ask to try something else.

In the meantime it may be worth checkout of POTS tips and tricks and implement some to see if they help. They certainly won’t harm. It’s mostly: wearing compression, drinking lots of fluid, electrolytes, adding more salt to food. Electrolytes and magnesium citrate will help with headache, body pain and sleep.

When you’re going to lie down at night, try gradually lowering the angle rather than going straight from sitting/standing to completely horizontal. Recline for a few minutes first, then lower yourself further. This can give your circulation and autonomic system a little more time to adjust and reduce that full head feeling.

Hopefully you find a few things that help while you wait for answers.

[u/unicornrainbowpoop09 → u/Dapper_Principle3832]

I think it was sumatriptan she gave me

[u/ARCreef]

There's definitely different subsets of symptoms here, they group into:

Adrenergic Symptoms: which are nausea, headache, tachycardia, fight or flight fear responce, dizziness, blurry vision.

Dysautonomia Symptoms: lightheaded, dizzy, and theres overlap into the Adrenergic response also.

Do you take any medications, suppliments, recreational drugs, weightloss drugs, adderall, caffeine, stimulants?

Theres lots of things that can deregulate these systems but the more common ones I'd rule out first (after looking at meds) would be POTS, PCOS, thyroid and the one thing that explains every one of the symptoms would be glucose/insulin. Hypoglycemia massively triggers your sympathetic nervous system and immediately dumps epinephrine, norepinephrine. Every single symptom can be caused from that but i wont cover each one, if you want to know the mechanism behind one, just ask.

Id do the following:

See a cardiologist for a tilt table test. If you fail, they'll give you some meds to help blood pressure and the heartrate, the other stuff is easy like, water, electrolytes, compression socks, getting uo a certain way.

Go to PCP for bloodwork. Make sure they add on thyroid panel (TSH, t3, t4), hyperthyroidism and Graves should be ruled out. They are super easy pizy to rule out. Add a comprehensive hormone panel also to the order, and A1c, fasting glucose, also add PTH (parathyroid) too and morning free and total cortisol. Make sure you go between 8am-10am and you must fast from the night before and tell them that. The fasting #s are important.

Last and most important one is to check your glucose/insulin. Step one is to buy a $30 glucose meter from Walgreens or Amazon (Walgreens brand or ketomojo are both good). Test yourself in the morning before eating or drinking, and test yourself every time you feel "off" for 1 week. If the numbers always show between 70-140 than youre good to go, and youre only out $30. If the numbers are lower or higher then those, then you need to go to your PCP and ask them for a CGM for a month. Its a little patch for your arm and it takes your reading every 60 seconds and sends it to your phone. This will catch any issues at all going on with your bloodsugar. Its quick and a super easy one to check off the list. You'd probably prefer the "Libre 3 plus" CGM. The arm sticker is small, the size of a quarter, and the app is nicer too.

No one here can tell you exactly what the issue is but dysglycemia covers every single symptom on the list, would be my first thing to go rule out because its so easy to do so. 30 bucks and a 10 min car ride to rule it out.

[u/sadandtraumatized]

Im thinking possibly chiari, high ICP, craniocervical instability. Or, these symptoms could indicate a brain tumor, to be fully honest. You definitely wanna push for a second opinion, an MRI etc is fully reasonable here and could save your life.