Advice welcome: 2 years no diagnosis, under neurologist, right sided head symptoms

Any thoughts welcome please. I’ve had a problem with the right side of my head the past 2 years. No idea what is causing symptoms but they’re interfering with my life.

Recently I’ve got other problems, not sure if there’s a link- breathing issues when I’m lying down and uncomfortable side of neck. I had past injury (more than 10 years ago) but no issues then.

Initial CT and MRI were normal, and EEG also normal. I was discharged. I’ve been referred to neurologist again and had MRI head (diffusion weighed) (waiting for results) and am waiting for long EEG. However I’ve been told this week that neurologist has left.

I’m a bit lost as I’ve no idea what they’re looking for.

Initially my GP thought I’d had a TIA and queried epilepsy. I get symptoms most of the time which seem to be worsening. It feels as if there’s a swelling or numbness in my head in one side, and I sometimes go into a ‘seizure’. That side feels different from the other side and I’m getting headaches there.

The symptoms are quite a lot (including static on one side, feeling off balance, going blank, right eye not focusing). I’ve had to cut down on what I do and im more sensitive to light and screens, my speech is sometimes affected.

At night I get anxious and angry when the symptoms make me physically uncomfortable. My head position is affected and I adjust it to how the head feels.

I’m starting to think I’m going a bit crazy imagining these symptoms. It’s worrying with no feedback from doctor. I’d appreciate any insight or advice, thanks.

[Lady70a]

Hi

I suffer from brain injury from carbon monoxide poisoning. I had to see a new neurologist last week. He also diagnosed FND.

Please don't think you are imagining your symptoms.

Take a look at these links > neurosymptoms.org and fndhope.org

If you feel the symptoms you have are seen on these sites. Mention this to this neurologist.

I hope you get some answers, there is nothing worse than not knowing.

I know how you feel. I've waited from 2014 for answers

Take care

[Hidden in reply to Lady70a]

Thanks I’ve looked at the websites, great to have some useful information recommended

[Leaf100]

Hi cat896,So sorry to hear you are having trouble getting answers.

Unfortunately this is not uncommon.

Brain issues cause a lot of very odd seeming sensations, and with no explaination it is easy to wonder if you are imagining it or losing your mind. You are not.

This, unfortunately, is also not uncommon. The symptoms you have mentioned will be very familiar to many here.

Give Headway a call if you are in the UK, and get them involved in your case. Getting help finding helpful medical professionals and knowing what key symptoms will help guide them can be useful when you are overwhelmed and do not know what they might see as significant. You likely wouod benefit from seeing other types of professionals, and they can advise you on that.

Do some reading on the Headway website to see if you can find what fits.

Some docs won't be helpful, some will. You will eventually find helpful docs. Sometimes it just takes longer than one would hope - and sometimes it happens relatively quickly.

Many brain injuries can not be seen on tests, they are diagnosed by reported and observed symptoms instead. And, useful to get any tests done that are offered, as you never know.

Keep a log, if you are able.

Be kind to yourself.

It is hard not to have answers. (Having such an injury often means getting used to living with a lot of unknowns, unfortunately.)

Keep us posted.

Leaf

[Hidden in reply to Leaf100]

Thanks have looked at headway factsheet which is really interesting, I appreciate the advice

[Leaf100 in reply to Hidden]

It is hard to do your own research and self education, whcih tends to trigger symptoms just in the doing, for so many of us. Please also consider groups, I am not a group person, and found doing some by zoom really helpful. (So I get it may feel like the last thing you want to do...)

Most importantly, be kind to yourself , you have to pace yourself and some days are better than others. And keep going when to comes to sorting things out. It is not easy.

[cat3]

Cat, just a note to say sorry to hear you're struggling with undiagnosed symptoms and wishing you well in getting them diagnosed and resolved in the near future.

Cat x

[Hidden in reply to cat3]

Thanks

[zeb111]

Hi Cat, I had a brain aneurysm over 10 years ago. I had terrible sharp painful headaches for most of those years.I finally managed to get a consultant to look at the problem last year,2020.

He found nerve damage right across the top of my head and down my neck on the left side.

I was prescribed pregabalin and it has been good for me. No more scary headaches since then.

I hope you find the answers as I know how frustrating it is when you know there is a problem but the doctors don't know what it is.

I was fortunate enough to get that consultation with the right person who then found out what the problem was.

Fingers crossed you get the answers you need.

Good luck and good health 👍

[Hidden]

Thanks, really helpful to hear about your experience