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Elevated Optic Nerves, Headaches & Dizziness

So I've decided to actually ask for some advice as I am literally at my wits end! I am a 26 yr old female, who has, for 5years I have suffered from dizziness, lightheadedness, vertigo, headaches, migraines, tinnitus, head pressure, blurred/off-ish vision troubles, 'neurological' type sensory symptoms and general intermittent feeling of being unwell. My story is quite long so I will try and keep it short!

5 years ago when my symptoms began I saw a GP who referred me to an ophthalmologist and a neurologist. I had a standard eye exam at my opticians too. During my eye exam they stopped and said 'We need to send you to the Emergency Department'. They thought I had a brain tumour basically... I went to hospital and they looked in my eyes again, they couldn't see a problem and sent me on my way. I had to wait weeks to see a neurologist.

During this wait my symptoms worsened and I started having severe panic attacks. I eventually saw the neuro and they diagnosed migraines after a clear/normal physical examination (no actual tests). Of course my symptoms then kept getting worse and I demanded a brain scan, (which the opticians had recommended from day one) and I was given a CT scan which showed 'nothing worrying', I was told I had "lateral ventricular asymmetry" and was told I must've been born like It as they couldn't see a cause!

Anyway, two months later I had another funny turn and this time I was really quite scared. I was admitted after having symptoms which mimic'd MS. They done eye exam, neuro exam, blind spot test, etc and I was told they thought I had MS and were going to send me for a full Brain and Spinal MRI. Crazy as it sounds I was so happy I was being taken seriously...

However, the MRI was completely normal..... In a way I wanted it to show something as no explanation for my symptoms is very stressful at this point!

Since my clear MRI I have had intermittent symptoms, Some days worse than others, I get about 5 headaches a week, dizzy spells every day, physical fatigue and blurry vision every now and then. (Sometimes like I am looking through a fishbowl)

I today went for an eye exam (just a check up to see if I needed glasses!)  and again the lady (a different one that last time!) is shocked to see such elevated optic nerves, with my history she wasn't going to send me to the emergency department only to get told I am fine, so she has old me to tell my GP again. I would just like to know what is wrong and whether anyone has any idea?

My ophthalmologist me ruined optic drusen but I don't think it's that... Any ideas?? I sometimes feel so dizzy and strange that I think I'm having a TIA or something!!! I'm fed up!!! I get woken up in the night with major head rushes like a warm dizzy feeling and a sense of pressure in my head. It's so odd!

Does anyone think I should press for a lumbare puncture??

So with all my symptoms, elevated optic nerves, lateral ventricular asymmetry but NO obvious causes, where do I go from here???

Thanks for your time, hope you can help.
6 Responses
711220 tn?1251891127
MEDICAL PROFESSIONAL
Optic nerve drusen makes the optic nerves look swollen and some may make the wrong diagnosis as papilledema.  This is usually caused the elevated intracranial pressure.  You do not need a lumbar puncture for optic nerve drusen.

Dr. O.
Avatar universal
Thankyou dr, do u think I have elevated intercraniel pressure? How do I get tested for this? What would cause this? Maybe this explains my headaches do you think?

My opthamologist did not test me for optic drusen, it was merely a suggestion of what it MIGHT be, (I am having an OCT at the end of January to check for optic drusen)

But optic drusen does not cause headaches and dizziness ? What do you think could be wrong?

Thankyou dr.
Avatar universal
Can I have a reply please dr's? Thankyou
14162424 tn?1434122764
The optic nerve head drusen and the headache and dizziness may be unrelated. The OCT will determine if there is drusen. If not papilledema must be ruled out. If all these tests are normal then the headache and dizziness can be caused by something else. A migraine varient or a binocular vision problem such a vertical heterophoria. All the best
Avatar universal
A lot of people do not realize that Physical Therapists who are trained in vestibular rehab can treat vertigo, balance, headache symptoms....have you tried that route yet?
1 Comments
btw, I tried it (not sure about OP) but was not covered by insurance... so it was pricey. Started doing yoga asanas instead.
Avatar universal
I've had most of your symptoms for the last 2 years too. It gets unnerving and scary at times. I got tired of going to doctors who specialize in 1 little thing and nothing else. A neurologist found nothing after a battery of tests, the ENT doctor said everything is normal after doing a ENG/VNG test, a neuro-ophthalmologist also said everything is fine. MRI looked good to radiologist. MdDS was another possibility but I did not go.... Instead I embraced yoga asanas in earnest and a low carb, high fat diet. Lost 12 pounds in the last 5 months, symptoms improved. I will continue to do long series of yoga asanas every day and emphasize a good diet instead of hitting dead ends with doctors.... Also check your A1C levels, most doctors won't even order this test if you look "normal" to them. I still get dizzy looking at my phone but hopefully things will improve in the next few months. Good luck to you.
2 Comments
In Ayurveda our symptoms are associated with "vata dosha" vitiation. One little known remedy to reverse vata's dominance (aside from oleation, keeping warm, etc) is to consume bone broth. It reverses the internal body dryness. I recently started taking marine peptides (a white powder derived from the scales of the snapper fish), with some success. Popping/cracking joints are less common than before. By reversing vata's dominance the symptoms you describe should be reduced.
Hope springs eternal
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