I have had a crainiotomy (28 years ago) and 3 separate coiling procedures (2 that were 5 years ago and 1 about 4 months ago) and my ocular migraines have gotten more and more frequent.
My vision changed for the worse after the most recent procdure and I was told the trauma of the surgery most likely just changed my vision permanently. But over the last few years my ocular migraines went from maybe 1 every 3 months to 1 every month and now they are multiple times per week.
Anyone else have similar vision/ocluar migraine side-effects?
I appreciate any feedback!
What have your docs told you abut which cranial nerves are affected? And, if the coiling of the last aneurysm was closer to one or more of the cranial nerves?
I had terrible vision issues...both eyes....worsened by both f/up angios...I finally was fortunate to get into vision therapy...it does not, cannot necessarily achieve 100% of vision damage/loss...it so reduced the pain of my one eye...and, the hideous migraine auras... Somehow therapy did bring me thru the bad migraines...and, initiated my ability to read/comprehend...tho I am yet so slow readng/remembering...
Interesting...your most recent procedure...suggests equivalent to my f/ups...the last was worse than the one before.. I had two sets of angios while hospitalized...and two that are termed the f/ups...
Prayers for lots of response here...and, for your docs looking at potential rehabing of your vision and/or other treatments... (???)
Perhaps a visit to a Neuro Omphomolagist would be something to consider? Just a thought, Peace, Janet
Good to see a "old timer" here. I was beginning to get concerned because there seem to be so few folks corresponding or writing posts from that long ago. My wife had clipping in 1994.
From the time you had your clipping 28 years ago until your first coiling, were you relatively headache free?
Thanks so much for the replies so far!!
Pat - I never considered that there could be angio association. But I will investigate therapy/rehab. I don't know if I did hear the area of nerves affected. I know in the first clippiing (28 years ago that the optic nerve was "leaned on" and physically I had to recover from my right eye not being quite all the way open ... but I do feel like I came back 100% from that original surgery.
Janet - I am calling neurosurgeon today to see if there is a referral to a neuro-opthalmolgist, if not I'll pursue on my own.
Ed - hi , yes and this "old timer" may just be aging ... ha ha ..I know it gets harder to recover when I'm not 20 years old anymore :) I had no ocular migraines between first clipping (1985) and first coiling (2007), The migraines started after 2007 surgeries and have just gotten progessively worse. But, (as I see the bight side to everything) there has been any headache/migraine pain ... just the vision, But I get nervous like everyone else. I try not to be paranoid, but I do get reassurance that my concerns are valid based on my history.
thanks again to everyone!
Since my coiling...I get bad migraine 1 or 2 times a month...usually starts in my neck on right side and goes up my head and into my eye...that particular eye has had a palsy since my surgery (very droopy esp with headaches) and causes awful pain...I wonder if your's is because of the coils too...
I used to get them every couple of years since I'm in my mid 20's (59 now). I haven't had one for a few years but when I had my first angiogram last August I had one during the procedure. I had another one in the recovery room maybe 2 hours after the first one. I had another one two days later. The next one was in November a week before my clipping surgery on the 20th. I was hoping the clipping would end them but I had another one last week. I don't get upset by them because I don't get a headache and they are kind of interesting to watch. It takes about 20 minutes for it to disappear. My vision seems to be okay although I did notice a block in my peripheral vision above my left eye at first but now that has since gone away. Maybe it's from the dye in the angiogram and the stress of the whole situation. Who knows? I hope they start to decrease for you and your vision improves. Good luck to you and take care,
Thanks Colleen - I'm fortunate that I don't have any pain with mine. I'm sorry you have had to deal with that monthly.
And thanks very much Bonnie. Yours sound very similar to mine - no pain and lasting 20 -40 minutes. When I had the first few it made me nervous. Then it didn't bother me to have them every month or so, but they are now at 4-6 times a week which makes me feel paranoid again. I try not to worry. It's not dibilitating. I work, drive, cook, do laundry :) I am very thankful, fortunate, and blessed. Just get nervous sometimes.
I really appreciate the feedback from everyone. The support means a lot from those familiar. Call is in to the Dr. just to get an opinion on should I be seen by him (neurosurgeon) or possibly by neurologist, or neuro-opthalmolgist. (Not expecting a call back until next week, and I'm ok with that).
Hi. I had ocular migraines for quite awhile post coiling. Once I had clipping done on three on my right side the migraines went away until I was having some issues with high blood pressure. Once I started the Mdes, I’ve not had one in three yrs.
By the way, I’m in NC too, Raleigh area. What part of the state are you in?
Thank you...I hope you bringing this forward will get an update from Georgia...
Hi Tammy and thanks for your feedback. Neurosurgeon has referred me to neurologist. Going to see headache specialist. Although I mentioned they affect my vision, most of the events are pain free (yay).
Hi Georgia, I have just been diagnosed with ocular migraines. My presented with what I thought was a typical migraine after going through a nuclear stress test but this time had visual disturbances (a grid like pattern in front of my vision at all times). This has been going on for two months and the doctor says it could self correct or we can opt for medication. I don’t have typical migraine pain which is good, but I do get daily headaches from my brain trying to make sense of the grid pattern.
How are your ocular migraines? Are they gone? If so what did you do for treatment?
I am 2 years post coiling of MCA Aneurysm. Classified-LARGE with wide neck. I get at least 3 headaches a week. Oxygen sits beside a chair at all times for me to use...It helps, but nothing takes it completely away. My last MRA was in Oct. and My Doctor says all is stable. I have had 2 prescription changes in my glasses in the last 2 years but Neuro Ophthalmologist says everything is good?????Depends on which end of this you're on. I am now battling muffled interrupted hearing in right ear along with pressure. I am seeing a ENT DOCTOR on Monday. I have severe stenosis in right carotid artery due to a Vascular Disease called FIBROMUSCULAR DYSPLASIA. But, I have been told by Doctor who did coiling that my pain and suffering is not related to aneurysm or Coiling. I have a large Aneurysm and a serious blood flow problem on the right side......HELLO.....I really want to say to my Doctor.......DON'T EVER TELL ME THAT THIS IS NOT ALL RELATED AGAIN......MY headaches are One of the REASONS MY Aneurysm was found. Do they honestly think we ENJOY this? Sorry for the RANT today. I am just having..One of those days....May God BLESS you all and give you comfort. :) Robin
Hi Robin, vent away we all have those days. Tomorrow will be a new and hopefully better day.
Thank you Laura, Hahaha..yes we do....I truly am grateful for ALL OF the Days GOD HAS and continues to BLESS me with. Hopefully many many more. God BLESS. :)
Robin...welcome back...seems like ages since we've said hello...
And, we likely have lots to share... as we look forward to numerous thanks this week...
I'm still having the ocular migraines, no pain, just the vision disturbances. I have been on and off of Topamax (anti-seizure med), originally suggested by neurosurgeon, but then referred to a neurologist. When I'm on it there are no migraines, but my neurologist said she didn't care for the medicine side effect possibilities and took me back off of it recently.
I can deal with the visual issues when they happen once a month or so, but they are back to a couple of times a week. I see neurologist Wednesday. I wonder what the next suggestion will be to resolve.
I didn't notice bad side effects from the med, but they think it may contribute to cognitive thinking and short-term memory issues.
Hope this helps :) Happy Monday!
Hi Robin ...
Rant ...it probably feels better to get it out. And I can honestly say "me too" regarding vision and updated prescriptions, etc. I have been told that all is ok, but you can't tell me that the vision change (in addition to the ocular migraines) isn't associated. There is no way they can't be related somehow. I had surgery and now I can't see good and have the ocular migraines .... that wasn't happening before the last surgery.
I just try to work though all of the eye issues. Wishing you luck!