optical migraines

[AshleyP]

I've suffered from what I call optical migraines for a very long time. They're more officially called ocular migraines although my symptoms don't exactly match what it commonly listed. It's sorta like having "sparkles" in my peripheral vision. It's not painful or debilitating, just more of a nuisance than anything.

It just occurred to me that I don't think I've had one since starting hormone therapy. <knocking on wood> 

All the best,
--AshleyP

[Laurie]

 I have them and being on hormones have not lessened them. On the contrary they have been linked to estrogen. If anything mine my have increased a little.

Laurie

[AshleyP]

I have them and being on hormones have not lessened them. On the contrary they have been linked to estrogen. If anything mine my have increased a little.

Yeah, I know that and it's why I was <knocking on wood>.

I have a feeling more people experience this than is reported. It took me a while to even understand that I suffered from it. For me, it only happens infrequently, so it may just be an anomaly. otoh, I've wondered if my caffeine intake might be a factor. That's down for me, too.

All the best,
--AshleyP   

[Jessica_Rose]

I also have optical migraines occasionally. Usually mine are triggered by certain food combinations. Although there is no pain, my vision is affected so strongly that I cannot read anything until the migraine subsides. If I notice one starting, taking some ibuprofen usually decreases the severity and length. I don't think I have had any since starting HRT, but since they were infrequent to start with I can't say whether HRT has had any affect.

[KathyLauren]

Interesting.  I occasionally get them too.  They start out as "sparkles" near my central vision, then gradually expand in a circle until they reach my peripheral vision and fade away.  If I am driving when the sparkles pass over my central vision, I have to pull over because it gives me a blind spot for a couple of minutes.

I think mine are triggered by either dehydration or low blood sugar.

Interestingly, I haven't had one since I started on HRT, in spite of being dehydrated most of the time from spiro.

[Jan]

I suffer ocular migraines too.  Having not suffered for years, they reappeared once I started HRT.  After a while they stopped again.  Perhaps it's due to the body rebalancing?

[Anne Blake]

I had experienced them for forty or fifty years. I had kind of associated them with coffee, there was some sort of indirect association but when they showed up often I would back off on the caffeine and they would reduce in frequency  and I could go back to coffee. I had not noticed that they have not showed up in the almost thirteen months of hormones. And I have definitely NOT cut back on coffee. Don't miss them at all!

[Paige]

Hi Ashley,

I have them too.  As a kid I would get big black spots in the middle of my eyes.  I could only see peripherally.  As I got older it switched and it started coming from the sides.  Sparkly, kaleidoscope, broken glass sort of thing.  I usually can't read or do anything with my eyes and need to lie down and sleep.

I started low dose E about a year ago.  At first I notice an uptick in the frequency of these migraines, but they've seemed to have calmed down for now.

Paige

[Laurie]

  I have experienced them for many years before starting HRT. They were usually infrequent and of various intensity. Sometimes so disruptive to my vision I appeared to get tunnel vision. If I was driving I sometimes needed to pull off the road until my vision returned to normal. Since starting I think they've become more frequent and a few times they've occurred several days in a row.
  Many do not associate them with migraine because the associated headache can occur up to a few days after the visual effects are over. My headaches usually follow closely and range from an annoying ache to ones the I am better off laying down and sleeping it off. many times it feels as though my head is in a fog.

  No matter what the flavor they are always annoying.

  Hugs,
   Laurie

[KayXo]

I just had a couple a few days ago (also called scintillating scotoma) and it's always kind of scary as I'm always afraid my vision will not go back to normal and I will lose part of my vision. They last about 30 minutes. I will sometimes get migraines after or not. It depends.

I started getting them post-op, about 1-2 episodes a year. These persisted despite quitting coffee.

I looked through the literature and although they state it may be triggered by excess estrogen, I'm not convinced because those doses and levels reported in women having ocular migraines were actually quite low and if some women start to get them during pregnancy, it could well be due to other factors other than estrogen like high progesterone levels, the stress of going through pregnancy or several other things going on during this time.

I tend to think it has more to do with stress as when I'm particularly stressed, these will happen. Since my transition, I'm also much more anxious than I used to be so at least, in my case, the culprit seems quite clear. I went to have my eyes checked, did all the possible tests and they found absolutely nothing wrong. They just said I was having ocular migraines, end of story.

Really funny that it should be mentioned the same week I had them! LOL. 

[AshleyP]

I guess I should count my blessings. My symptoms aren't nearly as severe as what y'all have described. While I didn't specifically say it in my original post, my episodes don't lead to a headache, but they do last for a half a day or more They don't really affect my ability to read or drive.

Nonetheless, if hormone therapy eliminates or even reduces their frequency, I'll consider that a positive.

All the best,
--AshleyP

[KayXo]

Only had them since HRT but they never last more than 30 minutes.

[Myranda]

Since about the spring of 2005, I've gotten really horrible headaches seemingly at random, but often appear to be linked to changes in the weather, particularly allergens and rain.  BUT, there have been enough of them over the years and of note the past year or so to note that they are not completely linked to these things either.  I was diagnosed with low T in 2012 and have only recently started Estrogen.  That being said, It seems like I've gotten more of these terrible headaches in a much shorter time frame since starting estrogen, than I would normally have.  And prior to starting Estrogen a month and a half ago, with the exception of my T levels the rest of my blood work and hormone levels were within normal male ranges.

Additionally, I don't think I would call my headaches or migraines optical ones, but more the I wish I could out out a large section of my head so the pain and nausea would go away kind.

[KayXo]

Have you ever checked your prolactin levels?

[Myranda]

I want ot say yes, but I'm not 100% positive.  THogu h I'm reasonably sure I did ask that question of my Urologist who I was working with regarding my Low T prior to deciding I needed to start MtF HRT.

[KayXo]

I would check, just to be sure.

[LexiDreamer]

I too suffer from the optical  effects of migraines, they are sometimes referred to as migraine auras.

When I was much younger I would only get them once every few years. As I got older I would get them about twice a year. Since starting HRT, I've had more this past year than in my whole life combined.

Several months back, I had one start in the afternoon, and I just happened to note the time. I had another one the next day at the exact same time, as the day before. Luckily the 3rd day didn't produce any.

A couple of months ago, I woke up with one happening.... very disconcerting to wake up that way.

Luckily, I rarely get associated headaches from them and they generally last about 30 minutes.

I have noticed they are more likely to appear when my HRT levels are changing or being adjusted, so I am pretty confident the ones I have had from the past year are hormonaly triggered.

[Myranda]

I would check, just to be sure.

I will look into it when I see my doctor again in September.

[KayXo]

I have noticed they are more likely to appear when my HRT levels are changing or being adjusted, so I am pretty confident the ones I have had from the past year are hormonaly triggered.

+1