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Undiagnosed Lightheadedness / Lack of Balance/Coordination

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1stly, I hope I am not breaking any forum rules here. If I am, please let me know.


THis is a long post. I apologize, but am desperate for help or recommendations or to speak to someone who has experienced something similar. Prior to August 20th, 2023, I've never experienced anything like this. I skateboarded as a kid among other sports that required balance.

August 20th, 2023: 3.5 hours into a drive home from the beach (I was driving), I experienced what felt like all of the blood running from my head/face. I managed to pull the car over off the interstate where my girlfriend took over driving. This was the 1st time anything like this had happened to me. Once home, I had a vodka drink and watched a movie and felt fine.

August 21st, 2023: I woke up feeling "lightheaded" or "dizzy" (room never would spin, though) or "pre-syncope" with a lack of balance/coordination.

August 23rd, 2023: The lightheadeded/balance issues persisted. My girlfriend is an RN in an Oncology ICU and tested by BP standing, sitting, lying down, and standing after having sat for X amount of time, etc. All came back near 120/80. We decided to go to an Urgent Care where the PA there diagnosed me with BBPV and recommended Meclizine. The Meclizine did not help.

August 31st, 2023: The same issues persist. I went to an appointment with my PCP. Performed Dix-Hallpike testing and results were negative, did not believe it to be BPPV. He ordered lab work, and based on my vast history with migraines (including migraines with aura), referred me to a neurologist.

September 3rd, 2023: Woke up one morning and the symptoms had worsened, which I believed caused me a great deal of anxiety. I have no prior history of anxiety or depression. As the morning progressed, I could not find any relief so I called my father who took me to the Emergency Room. They ordered an EKG, did a series of blood tests including Thyroid, and ordered I wear a heart monitor for 2 weeks. I was released within hours.

September 6th, 2023: Followed up with PCP, all blood results were normal (CBC w/ Differential, TSH, Comp. Metabolic Panel). Prescribed Buspirone. The Busprione had no effect.

September 7th, 2023: Followed up with PCP, prescribed Valium. Valium seemed to alleviate the lightheadedness feelings but not the balance/coordination. This lead doctor to diagnose with GAD and prescribed Lexapro. An MRI was also ordered w/ Contrast. I began taking Lexapro that evening.

September 12th, 2023: MRI performed, but could not hit vein to do w/ Contrast. Performed without. All results normal and impression was normal brain.

September 29th, 2023: Suffering insomnia. PCP switched from Lexapro to Zoloft starting at 25mg/day. Ended up upping it to 100/mg/day 2 weeks later; no results.

October 18th, 2023: Saw neurologist for 1st time, agreed all MRI results are normal. Prescribed migraine preventative Emgality & Ubrelvy for reactive.

October 19th, 2023: Symptoms persist; PCP referred to Cardiologist despite heart monitor results coming back normal (wore for two weeks) and normal EKG from E.R. visit on Sep. 3rd.

November 28th, 2023: Saw Cardiologist. Based on notes and tests he agreed it was not heart related, but agreed to have me do an ultrasound of the carotid arteries + an ultrasound of the heart. Both test came back normal.

December 6th, 2023: Neurologist followed up with, scheduled EEG - results came back normal.

December 20th, 2023: PCP referred to Therapist.

February 6th, 2023: Saw Therapist; I did not feel it was helpful. I never believed this was stress/anxiety from the beginning. I saw him again two weeks later before stopping Therapy.

March 8th, 2024: PCP referred me to and I saw a "Vestibular Therapist". Her evaluation consisted of several test. Measuring range of motion in my neck, basic eyesight test, and standing on a 3" thick foam mat with eyes open / eyes shut and feel open / feet togheter. Range of motion was "limited" and she said the muscles at the base of skull and in neck were "extremely tight". Also, I could stand on the 3" foam mat with my eyes open, feet apart or together just fine. But doing it with my eyes closed, I pretty much fall straight over. Her overall assessment was that with my history of migraines, my posture (I work in IT and sit in front of a PC all day), neck tightness, etc. that my eyes were compensating for my ears overall. She sent me home with excersises for those. I have been doing them.

March 18th, 2023: Saw Vestibular Therapist again. This time she performed "dry needling" to the left and right of the vertibrae along the base of my skull and down my neck. 10-12 times I felt a "Charlie horse" feeling that was painful but in a good way. The rest of that day, my neck was extremely sore.

March 19th, 2023: I woke up for the first day without lightheadedness. Still SOME lack of balance but not near as bad.

March 26th, 2023: Had another MRI this time done with contrast, results and impression overall normal and impression was "normal brain".

I have an ophthalmologist appointment coming up on April 20th as well.

These symptoms have been destroying my Quality of Life, my ability to drive, work, etc. The only relief I receive is Valium and even that is not helping as much anymore as my body builds a dependency. My PCP dose not want to increase the dosage, nor do I. Also, as of March 22, 2023 I have been off of the SSRIs and my symptoms are the same - IMO ruling out Anxiety/Stress/GAD. I believe the Valium is helping either in its vestibular suppressant or muscle relaxer capacity rather than anti-anxiety. I am posting this to reach out and see if anyone else has gone through something similar, or had recommendations. I am drawing at straws here. I also start a new phase of my career in May (moving into a Director role) that is very important to me both personally and financially. I've got to get to some sort of resolution here other than "more valium". Also, taking Valium to drive is an oxymoron in itself - although it does not effect me in ways such as fatigue or otherwise. Just makes the lightheaded feeling go away. I have not driven without Valium since August 20th, 2023. I am also an avid golfer and bowler. I golf in the low 80s and average bowling in the 180s. Both of those sports I cannot seem to play at all anymore, period - it's like my brain does not compute with my limbs. My friends tell me it looks like I've never swung a golf club before or thrown a bowling ball. Are their doctors out there (I am willing to travel) that SPECIALIZE in these types of things?

I should also mention that clozepam was prescribed and tried, but gave no relief at all so they switched me back to Valium.

Any help is appreciated! Thank you!

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For a more accurate diagnosis, an integrated approach is often required, including various laboratory and instrumental studies, consultation with specialists and analysis of the medical history. It is also important to take into account the patient's medical history, genetic predisposition and possible risk factors. If there are difficulties in making a diagnosis, the patient is advised to discuss his doubts and questions with his doctor, and, if necessary, contact specialists for additional advice and examination.