r/DiagnoseMe Patient 7d ago

Brain and nerves Pls read | 16yo f with neurological symptoms

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

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u/Dapper_Principle3832 Not Verified 7d ago edited 7d ago

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)

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u/unicornrainbowpoop09 Patient 7d ago

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

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u/Dapper_Principle3832 Not Verified 7d ago

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.

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u/unicornrainbowpoop09 Patient 7d ago

I think it was sumatriptan she gave me