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428506 tn?1296560999

Ophthalmic or Ocular migraines

Hi,
I'm a 29 F and I've been living with bizarre neurological symptoms that began about a year ago.

I have been through a battery of testing including blood, MRI, and lumbar puncture.  My doctors have been treating me with Neurontin and also a course of oral steroids, but I can not get long-term relief and have no diagnosis.

My brain MRI has ~6 high intensity T2 spots and 2 larger lesions, but they are unchanged so far, did not enhance with contrast, and are non-specific in etiology, though migraines were listed as a possible etiology.

One of my ongoing issues is ghosting, or mild double vision.  It began in May, went away while on steroids, and has returned.  I also sometimes see things like gray cirlces and flashing lights in my field of vision, but only for a few mintues.  I get pain in my eyes when I move them, and I am bloodshot all of the time.  (I start out the day not too bad, but by the end of the day have a lot of blood shot vessels.)

I get headaches, which I didn't beofre my problems started, but they are usually not that bad.

I had a full eye exam with dilation and my eyes are not causing the visual problems.

I have face pain and feelings of tingling and burning in my cheeks, and these issues become more pronounced when I have a headache.

I don't know much at all about migraines, but some of my issues sound like they may fit ocular migraines?

My doctors keep trying to treat me, but seem stuck in terms of pursuing a diagnosis and I am hoping to find better and more long term relief from my symptoms.  

I am not sure if migraines coud be the underlying cause of my problems, or if instead the underlying problem could be causing migraines.  Are there conditions know to cause migraines with visual distrubances?  

And ideas or comments are much appreciated.  I am following up with my physician later this week and hope to have questions/ideas to discuss with her.

Thanks.


7 Responses
Avatar universal
Hi,

How are you?
The first cause that comes to mind after reading g your post is migraine. Since other neurological lesions like brain tumor and stroke have already been ruled out. Your symptoms of headache, double vision, visual aura, and tingling and numbness in the face along with blood shot eyes are most likely due to migraine.
Have you tried any medication for migraine?
I would suggest you to maintain a headache diary as this will help you in identifying the possible triggers for migraine. Migraine can be triggered by food products like aged cheese, chocolates, caffeine, processed meats, MSG which is in abundance in Chinese food and red wine apart from bright lights and loud noises.
Hope this is helpful! Do keep us posted.
428506 tn?1296560999
Thank you for your reply.  I am well given the circumstances.  Thank you for your opinion that migraine seems likely.  I am seeing my physician this week and will discuss it.  

As I mentioned, I've had trouble for about a year now, and have experienced a slow and unpredictable progression of symptoms.  The visual disturbances (double vision, blood shot) did not begin until May '08.  Other issues, such as paresthesia (tingling/burning) in my feet and hands began much earler, in June '07.    I also get leg cramps that I can not stretch out and occasional twiching throughout my body, I think that started in early spring '08.

MS has been ruled out.  While I have some lesions on my brain MRI, they do not enhance and did not change between scans done in Jan and July '08.  I also had a normal lumbar puncture.  I had 2 EMG/nerve conduction studies, in Jan and May '08 that were unremarkable.  

Whatever is happening in me is affecting me constantly.  While the intenisty of symptoms may vary from day to day, I am never free enough of symptoms to feel normal.  My daily life and my work are affected, yet I am told again and again that it is "nothing."

The only medications I've been offered are Neurontin (which I am on now, 1200 mg/day) and I did a 15 day course of prednisone that temporarily relieved all of my symptoms.

As for diet/lifestyle, I quit drinking, smoking, artifical sweeteners, and proceesed foods by May '08 in hopes of combatting my situation.  I also became a vegetarian by first stopping red meat and later chicken/fish.  I use dairy sparingly.  I only eat freshly prepared food, no MSG and cook with little salt.  I drink lots of filtered water and green tea.  I still drink coffee, but in moderate amount and only in the morning.  I exercise almost every day in both the AM and PM.  My BP was nevery high, but now has been steady around 115/75 for months.

The slow developlemt of my symptoms makes me wonder if migraines are the underlying problem, or if instead they could be secondary?  Can migraines happen for months on end?  What type of specialist is best suited to address migraines?

My doctors seem "stumped."  I did consult 2 psychologists to help rule out emotional origins of my problems.  I don't know what to do next.  My doctors often want me to "wait and see" but in the meantime, my professional life is taking a toll.  

I consume sick days almost as quickly as I earn them, and my concentration is just awful due to the constant bizarre (and sometimes painful) sensations.  I do research in a physics lab, so the nature of my work mandates a clear head.  

If you (or anyone else reading this) has ideas for specific questions for me to ask my physician later this week, I would greatly appreciate it.  I hope my post is not too long.

Thank you again!
Avatar universal
Wonko,
When I read your posting, I thought maybe I was reading my own, the symptoms/situation etc. are so similar in so many ways.  I'm also taking 1200mg Neurontin to combat pain, which has limited success. I have my symptoms listed on my profile if you're curious.

I've done all of the battery of tests with no answers. My symptoms have also lasted about a year with unpredictability.  Whatever I have, maybe the same as you.  Only two differences in my symptoms is that in the last few months I've developed chronic stomach irritation feeling that just adds to the stress/discomfort of my daily life. No obvious medical problem with my stomach.  I'm also trying hard to do all of the right things.

Eyes: I've had visual snow since April that occurred a few weeks after I started getting pronounced floaters.

I'm also curious to understand whether a chronic migraine can lead to all of these problems since 2 years ago I had a dizzy/headache lasting 8 mo that subsided after taking a dose of predinosone. At that point, headache/fatigue was only bad symptom in my life.

Until 2 years ago, my health was essentially perfect so I'm fairly convinced that the constellation of symptoms is triggered by a common source (I could be wrong).  I will be very curious to see if you find any answers and I wish you the best in your quest for better health.
Jason
428506 tn?1296560999
Thanks for sharing this.

I did not list all of my symptoms before.  I do not have visual snow, but I do have stomach problems in the form of reflux that causes extra mucous in my throat so I have a ticke and cough from it.  The reflux is not responding well to over the counter meds, but did go away (along with my other symptoms) while I was on oral steroids.  

You mention the idea of a common source that tirggered your problems.  While I can not be sure, my "gut instinct" traces my condition back to a series of infections I had in April '07.  I had bronchitis, sinusitis, and ear infections all pretty much at the same time and was on antibiotics.  

It was not long after that tiny, seemingly innocent symptoms emerged.  I first went to a doctor about it in Jan '08.

Since then, it has been a difficult situation in which I go from dr. to dr.  Esp. early on, some doctors were rather dismissive, if not cruel.  Over time, it seems my doctors are concerned but unable to help.  All the while, I do what I can to fight back through lifestyle and positive attitude.

I too am curious about if/how migraines are involved.  For me, the first possible signs of migraine came so much later than other symptoms.  The first signs I had were tiny little "pings" or small shock-lke feelings in my face/hands/feet that happened just a few times a day and lasted only seconds.  I thought they were just age or something and had no concerns until several months of progression.  I am at a loss for an explanation, and so are my doctors.

If you ever get answers Jason, I hope you come back and share the solution!  My neurologist tells me that there are 1000's of un-named conditions that resolve themselves.  Yet I have yet to come across a testimonial like yours or mine that ends with "and then, after over a year of discomfort and progression, it turns out I was just fine."  I hold on to hope that it can happen, but would like to find evidence outside of my doctor's word.

I would be happy to ignore the problem if I could, and on the days when my symptom level is relatively low I can get away from thinking about it.  While on steroids I felt great and really thought this was over.  However, with my career at risk and daily discomfort, I am not able to put this to rest.  You can probably relate.

Best of luck in finding better health!
Avatar universal
Hi,

Chronic migraines are migraine headaches which occur for more than 15 days a month over a period of at least 6 months.
Since you have mentioned that these symptoms were triggered by series of infection, another possibility that comes to mind is chronic fatigue syndrome. This syndrome is characterized by muscle aches and pains, pains in the joints, tingling numbness, paraesthesias and digestive disturbances, depression, and nerve pains.
http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome
Does it sound familiar to you?
428506 tn?1296560999
Hi,
Thank you for the info on chronic migraine, I did not know that migraine could be that persistent over time.

I looked that the wiki page about CFS, and have in the past researched it.  However, I have increased my activity through daily exercise, while the article states that patients report critical reductions in activity.  I also am not depressed.  

he etiology of the lesions on my MRI are uncertain, but I do not think CFS could have caused them.

None of the doctors I have seen have proposed CFS, but one of my doctors mentioend the possibility of fibromyalgia.  Howver, my current neurologist disagrees due to my MRI and visual disturbances.  I don't think there is a simple answer, I just hope to make progress toward a long term solution.

Thanks again.
Avatar universal
Youre 2nd to last paragraph in your last email was priceless. I guess all of us hear from our doctors how everything will go away. It doesn't seem like these doctors have much time to read any of these medhelp web sites.  As we all know diagnosis for these sorts of conditions is very difficult and the database is limited, which is why it is so critical for members to report their diagnoses.  I am hoping that the reason we never hear follow ups from some members is that because the doctors were right -- their conditions magically vanished over time and these members were no longer motivated to read medhelp. Anyway, I had suggested to MedHelp that they organize the site to help solicit this info better from members. Not sure how to improve this.

BTW, I am curious if you tried any other drugs to lessen the symptoms. I was previously on nortriptylene with about similar efficacy. I am debating trying an SSRI drug to augment the neurontin but haven't yet, because if this is related to migraine then it might help. I don't believe depression is root cause, but I'm sure it's not helping.
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