Discussions By Condition: Nerve conditions

Issues involving orthostatic intolerance, photopsia and pulsatile tinnitus

Posted In: Nerve conditions 3 Replies
  • Posted By: Anonymous
  • February 9, 2011
  • 02:14 AM

I’m a 24-year-old caucasian male, who has been in decent health for the past few years. I have been experiencing headaches for the past few months, which I assumed were due to slight dehydration. On the 12th of December, 2010, I experienced a strange aura (upper-right quadrant of right eye), within 30 minutes the aura faded and I felt a headache shortly after. About 2 weeks later on the 26th of December 2010, I awoke to experiencing severe diplopia and vertigo. I went to the ER and the neurologist came up to see me. He stated that I was experiencing internuclear ophthalmoplegia (INO) and that it is generally a presenting sign of multiple sclerosis.

During my (overnight) stay in the hospital I was subjected to numerous blood tests (Lyme’s disease, syphilis, etc...), a CT scan to see if I had any visible trauma occurring within my brain; later, I was subjected to an MRI with and without contrast and lumbar puncture. Everything appeared normal in the initial lab results, CT scan, MRI and LP. The next morning the vertigo and internuclear ophthalmoplegia had disappeared; I felt completely normal.

Nearly 3 days after the lumbar puncture, I started to experience orthostatic intolerance. My headaches would become excruciating to the point of exhaustion, which I felt I would eventually pass out if I didn’t lay down. I began experiencing blurred vision after the headaches, which was very unnerving as my vision has always been 20/15, 20/15.

A few weeks later I went in to see the neurologist who had seen me in the ER to discuss the results of all the blood tests and to discuss what was found in my cerebrospinal fluid (CSF); I also explained to the neurologist the headaches and blurred vision that I had been experiencing and he felt that I was simply having migraines (every day...). With all of my results every thing came back normal. The only thing that came back positive was the varicella virus, which I had chickenpox when I was about 5-years-old. What the neurologist said about my CSF, “It’s good enough to drink! It’s like champagne!”

There were no oligoclonal bands, there was nothing on my MRI that suggested lesions. The neurologist stated that it is VERY unlikely that I would have multiple sclerosis as he had seen the MRI of my brain and stated that in most MS patients they have visible lesions as I was presenting with the INO. He went on to explain that what I was likely experiencing was an ophthalmoplegic migraine.

I continued having horrible instances of orthostatic intolerance. My headaches got worse and worse the longer I wasn’t able to lie. Standing or sitting for prolonged periods (generally 5-7 hours) were excruciating. In my numerous trips to the ER when my blood pressure is taken standing or sitting the systolic is roughly 20-28 units higher than when I am lying and the diastolic is roughly 5-15 units higher (i.e. laying down my blood pressure was 115/75, standing or sitting it was roughly 148/90).

As time went on with every occurring my anxiety and stress levels began to rise and I started having anxiety attacks on a nearly daily basis, which evolved into near-panic attacks.

On the 20th of January, 2011, I began experiencing photopsia (seeing small beads of light in my vision for a relatively short amount of time). I explained this to my neurologist and he stated that he would refer me to a ophthalmologist to see if I wasn’t having an issue with my eyes.

As of the 28th of January, 2011, I started to experience a feeling similar to pulsatile tinnitus (whooshing sound) in my left ear, which is generally intermittent at times. I also have been experiencing a feeling similar to otitis externa (swimmer’s ear) in both ears at times. I informed my neurologist, however, he seems to dismiss my claim. However, he agreed that I may require an epidural blood patch for the orthostatic headaches.

On the 31st of January, 2011, I received the epidural blood patch and was somewhat relieved of the symptoms I had been experiencing. I know that the blood patch was put higher than where I had received the lumbar puncture and I explained that the the anesthesiologist, but the did what they wanted to do. I am still experiencing headaches.

On the 3rd of February, 2011, I went in to see a ophthalmologist. He performed a general vision test (which I was still 20/15 in both eyes), dilated my pupil to take a look at my optic nerve, performed a vision acuity test to see if I had any new blind spots. Nothing was remarkable...

It’s the 8th of February and I’m getting increasingly frustrated.... What should I do?

Reply Flag this Discussion

3 Replies:

  • The other strange thing that I forgot to mention was the dreams that I have been having...I know this is going to sound weird but on the 6th of January, 2011, I had a strange dream that an alien or demon had touched the back of my neck. I felt as if it were a buzzing feeling on the back of my neck. I awoke feeling like I was somewhat paralyzed or like I was just breaking out of REM sleep (sleep paralysis perhaps?) However, upon waking I posted my elbows out and I was literally feeling paralyzed. I rolled on to my side and I felt like my back was shaking. It was kind of terrifying.About 2 weeks later I had another dream, essentially same circumstance except it involved a bee, hornet or something going to that same spot on the back of my neck.Today as I was taking a nap the exact same thing happened, which is why I took the time to write that big thread to begin with... I told my neurologist about the first two dreams and he just kind of shrugged them off as stress.I'm looking for any advice... As I am dealing with military doctors and well.... You all probably know the horror stories about military doctors...
    Anonymous 42789 Replies
    • February 9, 2011
    • 02:26 AM
    • 0
    Flag this Response
  • Hi there:I have many of the same symptoms you are describing with the most dominant symptom being the OI. I have been diagnosed with POTS, OI and have migraines with aura. Many people suffer from the same afflictions. I find daily high doses of riboflavin, as prescribed by my neurologist, almost eliminate the migraines. If I stop taking the riboflavin, after about 3-4 days, visual disturbances and headaches symptoms return.I don't know what causes what you describe as the anxiety attacks but for me I have attacks that feel like someone injected me with adrenaline and electrical shocks are shooting down my arms and legs. Some calls these attacks "autonomic storms". They can be excruciating.To treat the OI/POTS I was accepted into Dr. Levine's program which has allowed me to recondition my body without suffering from the dreadful exercise intolerance. The reconditioning helps your body overcome the symptoms of OI and POTS but does not cure the condition.You can read more about all of this, treatments, medical studies and riboflavin on my potsrecovery blog (just google it). Best of luck and don't despair you're not alone :-)-Liz
    Anonymous 42789 Replies
    • February 10, 2011
    • 11:50 AM
    • 0
    Flag this Response
  • Please disregard everything posted above. I'm fairly certain that anxiety is to blame for the majority of the problems, which I'm sure many people eventually find out on this forum.
    Anonymous 42789 Replies
    • February 22, 2011
    • 00:53 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.