ENT or Neuro?

[Unicorn34]

My 24 yr old DD24 has been struggling with symptoms of which I will list below. Their mental health has been awful alongside this and I am pulling my hair out and my own mental health is also being affected.

If anyone could read the symptoms and advise if they have had/seen the same, and what the outcome was, I'd be so grateful.

We have seen so far:

• GP - antibiotics and steriod nose sprays
• 1 x NHS neurologist - didn't recognise symptoms and discharged back to GP
• 1 x NHS ENT - looked up nose with a camera and didn't see any polyps, sent for a CT scan of face which came back "clear" and discharged back to GP
• 2 x Private Neurologists (one with specialism of eyes) - waiting for follow up
• Had private MRI scan for skull/brain and 3 x areas of spine MRI has come back with no issues (DD thought this could be MS or similar)
• Neck x-ray has come back to say that the curvature in the bones has gone and that this is now very straight in the neck area

The symptoms (main ones) are as follows:

• Feeling of pressure inside the head - behind eyes, around the back of the skull and in sinus areas mainly, affects with pain around nose and teeth, been told its possibly migraine but couldn't be sure.
• Feeling of weakness/heaviness in arms (esp. one side)
• Pains in hands and arms (sporadic)
• Pupils in both eyes change shape (to oval) and are different sizes - we have been told that there is no issue with this by the Neurologist
• Body always feels like its "moving" even when laying down - when standing can be quite wobbly and also feels like they are being dragged down into the floor

I'm sure there's more but my brain is tired out. Currently off work with stress but haven't even begun to sort my issues out. This has been ongoing since about April 2025. Just to add, if it helps, that DD has had Covid three times. They are now taking Vitamin D2 (as suggested by GP for migraines) and B12.

Honestly, ANY ideas would be very welcome. I am more than happy to answer any questions too. Thanks

Has she seen a private physiotherapist? The unusually straight spine in her neck might be significant to a physio. The first three bullet points on your list of symptoms might be connected to her neck. They might also be connected to jaw clenching, which she could be totally unconscious of.

Has she been referred to a Long Covid clinic?

Migraine could explain many of those symptoms. Vestibular migraines feel like vertigo and hemiplegic migraines can cause one sided weakness / pins and needles.

How long do symptoms last? Do they come on suddenly or over a long period of time?

No, not yet. Its like she just keeps getting fobbed off. Its one of the things that she has spike about though (been doing a lot of Googling).

This is another thing that has been mentioned. The symptoms haven't gone at all. Can a migraine last 3 months?

I’d say migraine too. I’ve suffered for many years with almost the exact same symptoms and I was eventually diagnosed with vestibular migraine. Medication has helped a lot.

Hope you don’t mind me answering this.

the vertigo, disequilibrium and just feeling unsteady are constant and have been something I’ve learnt to live with over the last 7 years. I get vision problems that fluctuate but the double vision is there always. The pressure in my head comes and goes. Numbness and weakness in my right side very rare now for me but used to last a few days.

Another issue we have is that she used to have an eating disorder and refuses to take meds that may cause weight gain, be addictive or cause blood pressure to drop as she already has low blood pressure. She is also on Citalopram 40mg and Quetiapine 25mg and is worried about seratonin syndrome. She has been offered Amitriptyline, Propranolol and Pregabalin, but is scared to take any.

Thanks for the comments so far.

Thanks. Can I ask what medication has helped please?

Thank you for sharing.

She has visual snow so sight is always below par.

I’m taking propranolol and amitriptyline. I had no side effects from the propranolol which I started first. I didn’t find it helped with symptoms very much but it did help me to not get so panicked when I had a vertigo attack. The amitriptyline really helped but took a good couple of months. Side effects are unpleasant but they do subside. I was very groggy in the morning (you take these at night) and I’m going to be honest I did gain a lot of weight very quickly but then it settled and I lost it again. So might not be a good fit for your dd x

Thank you @Showerflowers
The weight gain part will make this a no for DD unfortunately. The MH will be worse again. But the Propranolol may be worth a go i guess, and some physio as mentioned above.

We had a really bad night with DD wanting off this World but got through it.

Who was able to get your diagnosis for you, if you don't mind me asking?

@Unicorn34i was diagnosed by neurologist after being referred on from ENT. I then had some vestibular therapy which although I don’t think helped the symptoms much it did help me to fully understand the condition which in turn helped massively with the anxiety I had. Best of luck xx it’s an awful thing to go through for everyone involved