Pain in my left temple,double vision. Doctors can't diagnose me

Posted by aigerimkabulova @aigerimkabulova, Nov 14, 2023

Hi everyone! I have been dealing with a headache for a month now. Recently it got so bad that I had dizziness and my vision was blurry so I was admitted to hospital. Doctors gave me IV infusions of painkillers and glucocorticoids and the headache subsided but did not go away. With my both eyes open I still have double vision. As soon as I close my left or right eye I can see fine. But when I try to see with both of my eyes my vision is double. Throughout the day I have sudden sharp pain in my left temple. The right side of my head does not hurt. Sometimes it feels like the pain is in the back of my left eye. I had a brain MRI and CT angiography done. On my MRI doctors saw cyst in cavum veli interpositi (12x4 millimeters), but my doctors are convinced that it is not causing a problem. I got a CT angiography as doctors were suspecting aneurysm, but the scan was clear according to them. So doctors said that they did not see anything wrong on the MRI and CT images and gave me no diagnosis. For now I was prescribed painkillers and MRI in 3 months, but my pain does not go away and I am not sure what to do next. What are my next actions? Should I get brain MRI with contrast?

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It’s sad that with so many imaging and diagnostic tools, we suffer pain and go undiagnosed with no treatment options. Have they checked your TMJ? Could they see it in the CT? Contrast might reveal more… but if doctors are convinced the cyst is not the cause, follow your gut instinct…the cyst might be not the cause, but a sign of something else… and hopefully the cause is not serious, but debilitating pain can’t be ignored…

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@leonsita

It’s sad that with so many imaging and diagnostic tools, we suffer pain and go undiagnosed with no treatment options. Have they checked your TMJ? Could they see it in the CT? Contrast might reveal more… but if doctors are convinced the cyst is not the cause, follow your gut instinct…the cyst might be not the cause, but a sign of something else… and hopefully the cause is not serious, but debilitating pain can’t be ignored…

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Thanks for your comment!
I think with my MRI they definitely couldn't see my TMJ and with my CT angiography they could only see the blood vessels in the TMJ region.

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See your opthamologist immediately to rule out Giant Cell Artiritis, an inflammation of the temporal artery, which can cause blindness if not treated. Your symptoms are characteristic. I have the disease and have lost my eye sight in one eye.

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Hi @aigerimkabulova. Just some reassurance in this daunting time. I am 2 yr post covid with now suspected small vessel vasculitis and my daughter is over 5 yrs suspected dysautonomia. Both of us suffer from left temple stabbing, constant, everchanging pain with vision changes. Many tests/labs including brain mri’s with contrast and no diagnosis. Whether its a predisposition genetically, brain lesions, small mass, or coincidence, we both have dealt with the challenges living with it in our own ways. We are still finding happy moments and living life to the fullest as we can while seeking help to lessen/prevent symptoms. Whether its food, stress, environment, lack of previous body movements, there are a lot of simple things to help maneuver thru Speech Therapy(not just speech 🙃), Physical Therapy to help vision and strengthen/change other areas to alleviate head pain, breathing techniques and nutrition changes to calm nervous system and reduce stress on blood vessels, and really being mindful of daily activities to adjust not overdoing by saying “I need to not do this to feel better later”. Not trivializing and each of us has responsibilities to maneuver so this is a patient and selfish in best way process. My daughter has gone from constant ER visits, hospital stays, and a life revolving around medical appts to now knowing certain triggers to avoid and helpful daily living routines to soak up the best of everyday! Hope this helped 🌈

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@westcom

See your opthamologist immediately to rule out Giant Cell Artiritis, an inflammation of the temporal artery, which can cause blindness if not treated. Your symptoms are characteristic. I have the disease and have lost my eye sight in one eye.

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Thanks a lot! Will definitely check it out!

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@law59

Hi @aigerimkabulova. Just some reassurance in this daunting time. I am 2 yr post covid with now suspected small vessel vasculitis and my daughter is over 5 yrs suspected dysautonomia. Both of us suffer from left temple stabbing, constant, everchanging pain with vision changes. Many tests/labs including brain mri’s with contrast and no diagnosis. Whether its a predisposition genetically, brain lesions, small mass, or coincidence, we both have dealt with the challenges living with it in our own ways. We are still finding happy moments and living life to the fullest as we can while seeking help to lessen/prevent symptoms. Whether its food, stress, environment, lack of previous body movements, there are a lot of simple things to help maneuver thru Speech Therapy(not just speech 🙃), Physical Therapy to help vision and strengthen/change other areas to alleviate head pain, breathing techniques and nutrition changes to calm nervous system and reduce stress on blood vessels, and really being mindful of daily activities to adjust not overdoing by saying “I need to not do this to feel better later”. Not trivializing and each of us has responsibilities to maneuver so this is a patient and selfish in best way process. My daughter has gone from constant ER visits, hospital stays, and a life revolving around medical appts to now knowing certain triggers to avoid and helpful daily living routines to soak up the best of everyday! Hope this helped 🌈

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Thanks a lot for your support! Wishing you and your daughter all the best!❤️

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@aigerimkabulova sounds to me like you might have Giant Cell Arteritis (GCA) which is an autoimmune disease. It is a form of Vasculitis and is treated by a Rheumatologist. “Google” it.
Please get an appointment quickly with a Rheumatologist or an eye specialist ASAP! Your sight may be permanently damaged if you don’t get the inflammation down quickly!
Please don’t put it off…

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@aigerimkabulova Hello and welcome to Connect. Here are a few discussions about Diplopia and various related conditions that may give you some directions to consider.

"Double Vision & Spinal Stenosis "
https://connect.mayoclinic.org/discussion/double-vision-spinal-stenosis/

"4th Cranial Nerve Palsy, Double Vision "
https://connect.mayoclinic.org/discussion/4th-cranial-nerve-palsy-double-vision/

"Diplopia (Double Vision) Help!"
https://connect.mayoclinic.org/discussion/diplopia-double-vision-help/

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5 years ago I had stabbing pain that started in my left temple and went to the middle of my forehead. Doctor ruled out giant cell arteritis. Over the ensuing 5 years other symptoms appeared like off and on pain behind my eye and on the left side of my face. Once in a while, weird dizzy spells that only lasted 15 seconds. A CT scan was done to check for sinus issues 5 years ago and the report came back as not a sinus problem. The radiologist who read the CT scan did not report that I had a meningioma. That was discovered 6 months ago when a neurologist took the time to go back into my records from 5 years ago. So for 5 years I've been living with what I thought was an undiagnosed sinus problem when actually it was a meningioma pressing on my trigeminal nerve and very close to my optic nerve. The meningioma had grown 50% in the five years that it went undiagnosed. Having an MRI with contrast is a good idea. And I would get a second opinion about the "cyst."

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I had double vision I would say for at least a decade if not longer. My double vision was so bad that when it would start within minutes I was off balance and could not walk - it was not blurry but double. Now I noticed it when certain things happened when I had been in a car or I had been looking around. My neurologist seeing as though I had seizures looked continuously for years and got tired of looking despite my complaining, they thought I was making it up since they could find nothing. I never thought about headaches but never really had bad ones. Well, when I had my VNS implant to help control my seizures I in 5 years have had only one less than 30 minute instance of double vision. I would get control of my double vision by staring straight forward. I suppose closing my eyes might have done that too. Has anyone ever thought these might be a hallmark of a generalized seizure? Good luck! -- Luck

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