Vision rant
Posted , 8 users are following.
After my first migraine with aura three months ago, I began having visual disturbances (blurriness, flashes of light, floaters, after images, trailing, oscillating vision, etc.). I have always had perfect vision, so these new symptoms have been stressful and worrisome. I was told by my gp, obgyn, neurologist, neuro-ophthalmologist, and ophthalmologist that my vision symptoms are caused by migraine. I have suffered from menstrual migraines for 7-8 years, but only got one migraine a month on the first day of my period. Since my visual disturbances are 24/7, I was diagnosed with persistent migraine status.
So, today I go to my follow-up neurologist appointment and we discuss my ongoing vision disturbances and he says its highly unusual. He said persistent migraine status is rare and he probably only sees 1 patient a year with it. He then suggests I go to a new neuro-ophthalmologist. Of course, I mention hormones and he dismissed the idea, I am tired of going to doctor after doctor and being told my symptoms are unusual. I am not a crazy person. I was completely normal three months ago. How do you go blind overnight?!?! I have read hundreds of posts (peri/menopause and pregnancy forums) from women experiencing migraine aura and vision disturbances for the first time. I am 99.9% positive that I have a hormone imbalance (high estrogen / low progesterone). Why will no one help me?!?!
1 like, 19 replies
CaliforniaMel staci88515
Posted
I had migraines from the time I was 19. Weirdly, since meno, I've had maybe one or two total. (That's in the past two years.) Previously, I'd get one or two a month.
You shouldn't just find a new neuro opthalmologist, IMO (I'm NOT in the medical field, BTW). You should find someone who is willing to look into midlife onset of migraine, including a thorough MRI. This isn't anything to mess with. I am NOT trying to scare you. At all. But don't let them dismiss ongoing migraine that comes on suddenly at menopause. Yes, it could "just" be hormonal (though as you and I know there's no "just" hormonal, LOL, hormonal issues can literally rule our lives). But if you haven't been given brain/neuro tests that would be given whether you were male or female, a toddler or an adult or a senior, then you're not seeing the right doctors. Please get this checked out!
With that said, my vision went haywire at meno. I spent two years crying because I couldn't see. My eyes wouldn't work "together." Hard to explain. I'd see well out of one and then out of the other instead so I knew it wasn't just my prescription. However, that too changed. For example, I entirely lost my astigmatism in one eye. I spent well in excess of $5000 on glasses (progressives) in a panic to finally be able to see. It was hell on earth. I also had a lot of blurring. The docs kept shrugging and telling me my prescriptions (which seemed to change every few months) "should be" fine.
I was DXd with dry eye syndrome. That contributes somewhat but there's no way my insane symptoms and horrific lack of eyes "coordinating" were all due to dry eye. Yet somehow it seems to be resolving now. I see so much better, finally. I do think meno can wreak hell on your eyes.
staci88515 CaliforniaMel
Posted
I've had all the scans...all clear. I too am on the verge of tears most days. I went from normal vision to Mrs. Magoo overnight. I hate not being able to see. I know EXACTLY what you mean when you say that your eyes are not working together. I am constantly closing each eye to see which is working better. I am convinced that the shape of my eye has somehow changed. I see jumping patterns and its hard to read white text on a black background. I read that astigmatism could be the cause. I never had astigmatism of any other eye condition. I wish I could figure this all out. I am beyond frustrated.
CaliforniaMel staci88515
Posted
^ Staci, wow, this is exactly what I went through. I had about given up on ever seeing well again. I couldn't watch TV at all, it drove me CRAZY. I'd sit there and read with a book up to my face while my family was watching and commenting on TV. I couldn't go to movies, either. I felt really isolated, set apart. Nobody really understood. It was all the time. 24/7.
It DID resolve, or mostly resolve. I can't believe how much better I see now. I feel like there's hope. I did/do go to a neuro opthalmologist. (What the hell IS that spelling? Why can I never get that right?) He mumbled about dry eye syndrome and putting me on an "aggressive" plan to get my eyes more moist. They're not more moist, I can tell, but my vision did eventually begin to resolve. My eyes began to work together with this latest prescription.
BTW, white text on black background still drives me insane. It drives me CRAZY. When my husband flips through the listings channel on Spectrum I just try not to look.
I wish I had more info for you, or any info at all.
CaliforniaMel
Posted
Oh, I should add, at first this latest prescription did not work at all. I too was constantly looking through just one eye with the other closed. I still check throughout the day, doing that. It's like I'm scarred from it. This has been horrific. 😦
So I really, really hear you.
But what I was getting at, was...at first this drove me buggy...eyes still not working together...so weird...I sort of gave up and considered myself handicapped and decided if I could make out anything at all even with this wonky vision, that was the best it was ever going to get again. Somehow - and this literally took months - eventually my eyes began to work together. I couldn't believe it. I'm still scared to believe it. I still check all day long. I wish, wish, wish doctors would really listen to this sort of thing. They can't imagine this, usually. It becomes your whole life.
Please hang in there. You may be able to "re-teach" your eyes to see together. Stick with ONE RX, is my advice here. Even if it drives you crazy. See if your eyes slowly begin to adjust to it.
staci88515 CaliforniaMel
Posted
WOW! Thank you so much for giving me hope! I am so depressed feeling as though this is my new normal. My vision was perfect three months ago. I know it is a bit melodramatic, but I feel disabled too! I saw an ophthalmologist and a neuro-ophthalmologist (it's the first h that is the hard part of the spelling) and both said my eyes are healthy and my vision issues are due to migraines. I say BS! There is NO WAY that 100% of my vision problems are due to migraines. Sure the auras are migraine related, but not the blurriness and oscillating vision. I truly believe it is all due to excess estrogen.
I hope I have the same results as you. I keep trying to ignore the weirdness in my vision hoping my brain will start to ignore the odd stuff.
CaliforniaMel staci88515
Posted
You are so welcome. ❤️ It's not melodramatic. This is big and it affects your whole life.
I forgot to mention that I started on progesterone cream not long before my eyes started getting better. I just saw that you wondered about estrogen. I too have always felt estrogen dominant. I wonder, could there be a tie-in??? I started the cream on my nurse practitioner's recommendation.
staci88515 CaliforniaMel
Posted
Really?? Wow. I started researching hormones/eyes and found that girls when they first get their periods, pregnant women, menopausal women, and trans-gender taking HRT were experiencing vision changes. That's not a coincidence! Then, my research led me to women experiencing aura while on birth control (hormonal). Estrogen is an excitatory hormone and migraine auras are caused by over excitement in the brain stem. It doesn't take take a genius to figure out that I am experiencing vision changes and migraine aura due to perimenopause. Why is there no doctor making the connection?!?!
I am overweight and eat a lot of carbs/cheese because I am a lazy vegetarian. I know excess weight equals excess estrogen. Based on the symptoms I read online (PMS, migraine, breast soreness, belly fat, etc.), I am definitely estrogen dominant.
I could be way off in my logic, but it all makes sense to me. Yet, when I try to mention hormones to my doctors, I get immediately dismissed.
pamela2016 staci88515
Posted
your not alone i have the vision disturbances on a daily basis fir three years now its scary
staci88515 pamela2016
Posted
Pamela,
Has any doctor told you it is related to hormones? If yes, do you know if you have high or low estrogen? Three years? You poor thing. I wonder if we will be like this forever???
pamela2016 staci88515
Posted
ive had no dr to admit its related to hormones but i have had drs to think im crazy, just because they cant see these symptoms doesn't mean they dont exist we suffer cause of this. im told its all anxiety when i know my body and know that it isnt. i haven't had hormones checked for a few years after ny dr said she won't check them again and my estrogen was low then
Shana_P staci88515
Posted
Hi Staci,
I have had snowy vision , blurry vision, double vision for months and color streaks of yellow and pink...going on for the last few weeks. I have been to 6 eye appointments and they always say my eyes are extremely healthy. I am going through Post Concussion Syndrome but not sure if these are related to perimenopause or the Concussion. I really believe when women's hormones are all out of whack a Myriad of Symptoms can happen from changes in your skin, to visual changes to headaches, dizziness, feeling off balance, vertigo...etc....I hope this has helped you...
staci88515 Shana_P
Posted
Shana,
I am so sorry you have to deal with this too. I know we have talked before and I often try to remember something you told me a few weeks back. You said your doctor told you to keep telling yourself that you are getting better everyday. I find myself saying this out loud at least once a day. Thank you!
Shana_P staci88515
Posted
Staci,
Is it working for you? I actual said that and I say it everyday!!! Your very welcome😊
staci88515 Shana_P
Posted
Yes! It hasn't helps with the blurriness, but I think it has helped with the static, after images, and trailing!!
tracy43395 staci88515
Posted
I have been the same for 5 years. My gp does agree its migraines but acknowledges that my menopause is the cause of it. I have yet to find a drug that will give me my sight back. I have tried topamax, anti depressants, pregabalin, and have now been given gabapentin which I have yet to try. I cannot read, knit, sew etc. My time on here is limited.
staci88515 tracy43395
Posted
I don't think people realize how debilitating it can be. I struggle everyday with accepting that this is my new reality. I can't believe how different my life is than it was three months ago. It is sad. I wish we had an answer.