Lightheaded/ Feel like I am Dying 30YO Male

Posted by blueberry12345 @blueberry12345, May 27, 2021

Hi All,

Wondering if anyone has some advice for this feeling, I have been experiencing over the past 4 years, now I have symptoms 24/7. From the moment I wake up, I feel like my head is extremely light, like I am going to pass out/ in a dream like state. The feeling is so overwhelming I can barely see, I have intense brain fog and feel unsteady on my feet. There a glimpse of times when I do feel ‘a bit’ normal, an afternoon here and there. Although my line of ‘normal’ has been immensely blurred. I have been to, 3 neurologists, 1 neurosurgeon, 1 ears nose throat specialist, 3 psychiatrists and countless GPs. I have had a bloodwork, CT done, and an MRI done. The MRI showed an retro cerebellar arachnoid cyst, measuring 7.8 x 3.7 cm and there is mild impression upon the vermis. In which the neurosurgeon believe is actually just a large cisterna magna, conflicting opinions which even complicates things more. They believe I have vestibular migraines, but the only symptom I have ever experienced is this contestant lightheaded feeling. All medication for migraine has never helped this symptom at all. The only thing that takes it away ‘sometimes’ is lorazepam or clonazepam. I’m really at my breaking point of waking up every day like this and confused as to where to turn to next, I feel like something is wrong. Like my brain in dying.

Meds I have tried/ am currently on:
Every triptan out there
Gabapentin
Betahistine
Prednisone
Aventyl
Lorazepam
Clonazepam
Every SRRI/SNRI out there basically
Botox- 1 session so far
Occipital nerve block- 1 session so far
All the typical vitamins for migraines
Blood tests have been normal: slightly high lymphocytes, Urea and Iron saturation

I sleep 8-9 hours a night, eat very healthy, and work out daily.

Any suggestions on tests or meds to bring to my dr would be greatly appreciated!

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aleciarickabaugh | @aleciarickabaugh | May 27, 2021

Have you had a paraneoplastic autoimmune antibody panel done?

blueberry12345 | @blueberry12345 | May 28, 2021

In reply to @aleciarickabaugh "Have you had a paraneoplastic autoimmune antibody panel done?" + (show)

I have not, i will look into that! Thanks for the suggestion!

Amanda Roe | @amandajro | May 28, 2021

Hello @blueberry12345 and welcome to Mayo Clinic Connect. You have definitely been seeking answers and still are yet to have someone give you a definitive explanation for what you are feeling and experiencing. Have you considered a second opinion by another medical hospital, assuming the care you have had so far has been at the same one?

blueberry12345 | @blueberry12345 | May 28, 2021

In reply to @amandajro "Hello @blueberry12345 and welcome to Mayo Clinic Connect. You have definitely been seeking answers and still..." + (show)

Hi there! Thanks for the suggestion. I have seen three neurologists in two different provinces (I am in Canada which kind of limits me) who all seem to think the same thing. The answer always seems to be a try new med and wait 1-3 months. Which has been my life for the last few years, constant med changes.Once things open up will definitely be looking into options in the US. Thanks again for the help.

@seekinginfo | @nrd1 | May 28, 2021

@blueberry12345- it sounds like you have tried all the conventional taught routes to go when feeling unease.

You state you eat very healthy, exercise daily and sleep 8-9 hours a night. That all sounds very positive.

I’m curious if you have met with anyone who has talked to you about total overall lifestyle. Starting with stress first. What are your other daily routines habits. How do you process stress and thoughts.

Ongoing doctor visits, searches, tests and multiple drugs and drug changes can cause additional stress on anyone.
The hunt for thinking that something is wrong and you are dying can wreak all kinds and havoc. When you go from specialist to specialist they are trained to only look at one thing. Never asking questions to understand the bigger picture.
Stress can show up in many different ways.
It doesn’t mean it’s not a real feeling, but it can’t be measured by a test.

This is just a thought.

Larry | @larryh123 | May 29, 2021

In reply to @blueberry12345 "Hi there! Thanks for the suggestion. I have seen three neurologists in two different provinces (I..." + (show)

I know first hand what it feels like to be a medical mystery. I used to feel lik a pin cushoion with all of the blood tests I had. One time I had 21 vials drawn and 117 tests performed. Still nothing to work with.
So - I can empathize with you.
There are so many things that can cause what you are describing. You have been to neurologists and psych docs and cant get answers. For me it was an astute doc that noticed something - albeit minor that I pursued. Thank the Lord I was blessed with a great neurologist at Mayo that did a lot of tesiing to come to a diagnosis.

I might suggest doing a daily journal from the time you wake to the time you go to bed. This was very useful for me to show my docs. This migh seem like something inconsequential but could help shed a little more light on what is going on. You might find something that makes things worse or triggers another feeling. All of that can be important pieces of the puzzle.

Don’t give up. I understand it feels like there will be no answers.
Prayer can be a great place to find solace and peace. For me - that time is one of the only times I can focus on something other than myself.

Peace
Larry