Headaches after aneurysms / symptoms, how to categorize

I see a lot of you talking about headaches, I’ve been having a lot of them myself lately, some lasting up to 3 weeks at a time, I Have one right now and I think it’s on day five. So I’ve always been a headache person, I have had them since I was a teenager, probably 15 years old, terrible migraines. I am now 60 years old.

I had my ruptured aneurysm, subarachnoid hemorrhage in May of 2020, i’m getting ready to hit a 4 year mark, so when I got my thunderclap headache, I just thought I was just having this incredible migraine, well obviously I found out that it wasn’t, and since then I’ve had 3 aneurysms repaired. Since the rupture, I will say there is definitely an increase in the headaches, And I would think those of you that didn’t have them probably do now my opinion only. I was told that OK they couldn’t see any reason why I would be having headaches, I personally believe, that there isn’t enough study done for the after effects of people with aneurysms, “again this is my personal belief”, because I’ve done a lot of studying.

Anyhow, in July, I was on the phone, and suddenly I lost partial vision in my right eye, so what happened was, I saw all these pretty sparkly stars, and then like things were melting and then went gray, I could see like a gray moon and only a little bit of my vision was there, it lasted for about five minutes, as soon as I got off the phone, I stayed on the phone while it was there because I was like oh my God I’m going blind. I called my primary doctor and he had me come right in, he told me it was a mini stroke, “Amaurosis Fagax”, and that it was a warning sign that I was gonna have a stroke, anyway they sent me to a cardiologist they checked my heart, and nothing was ever really done.

It didn’t happen for a while, maybe about a month later I had another one another partial loss, and then I had another, and it seemed that they were becoming more frequent. I didn’t tell my doctor because nothing was really done, and now I had a new primary doctor, and I had got this horrible headache in between all of these vision things, my headache was so bad I ended up going to the emergency room and all they did was give me some stupid medicine that made me go to sleep. I woke up the next morning with the same headache. I went to the emergency room with ridiculous. And then it happened I had another Vision thing and my whole vision was gone and that eye the same eye this time I lost all my vision and they were lasting a little bit longer 10 to 15, Same scenario, it always started with a pretty stars and then I got like a heat wave and then a vision loss. So I called my primary doctor and got myself an appointment went in. He said it wasn’t a mini stroke. He called it a Ophthalmoplegic Migraine, I tried to explain that the migraines don’t happen with the vision loss, but they still say that the vision loss is part of the migraine thing so they put me on all kinds of medicine no explanation for the headaches don’t know why I’m having them but here let’s take this let’s take that anyway I continued to have the vision loss and I was probably having them once a week or once every two weeks and I went back to the doctor and he told me that next time it happens to just go straight to the ER and they can’t send me home without telling me what’s going on, so that’s what I did.

They did three different types of CT scans on me. They did two MRIs. They did the MRI and the MRA. They also did an angiogram while I was there, they did find some kinks in some veins at the base of my skull, another small aneurysm, but that isn’t the problem, and it’s too small to even worry about, and sent me home saying that I’m getting blood clots that get stuck in the retinal artery, and then they work their way lose.

I did see an ophthalmologist, and I have a small cataract on my right eye, which is where the vision loss has been, however, he requested several other test and is looking into the arteries of that eye and down into my neck.

I have an appointment today for the first test, it’s called a ULTRASOUND DUPLEX BILATERAL CAROTID ARTERIES

I know I rambled on a little bit about everything, but I did see some of you ask just about headaches, and I did see some of you talk about seeing stars and vision problems, and I have both. I thought maybe this might help you guys, this is some of the stuff I’m going through and some of the test I’ll be doing, so maybe you can learn from this. They did put me on something called Topamax that I take at night time for the headaches, it’s helped me not wake up with a headache however, I still get headaches, so I don’t know I’ll try and keep you guys posted, sometimes I forget!!!

Karen

Hi Karen. It doesn’t sound like you’ve visited a stroke center yet. I had a TIA last year and a couple months later has some additional symptoms (increased auras among them) and no one was sure if they were TIAs or something new. My GP sent me to a cardiologist, I saw the most thorough opthamologist I’ve ever encountered, and I saw my neurologist. My neurologist determined my health history (especilally with the aneurysms) was complicated anough to warrant a visit to a stroke center (which is part of neurosciences but even more specialized). They focus on a proper diagnosis and treatment to avert stroke. I expected even heavier blood thinners but they gave me something else more appropriate for the suspected cause. I highly suggest you try to get an appointment with them. If your GP cannot assist, you may want to contact the neurosciences department in a hospital systtem near you to get connected. Best of luck. This is scary stuff. Best to leave no stone unturned.

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@judy this is music to my ears, thank you so much for this information. If you don’t mind me Asking, can you tell me where you’re from?

I’m currently in central Florida but originally from Pennsylvania.

Hi Judi,

I have more questions, would it be possible to talk to you, I know you’re 3 hours ahead on time, but sometimes I like to work at things backwards, when I’m not getting anywhere doing it the right way.

Karen

Most certainly! I’m out right now but I’ll be around all day tomorrow. I work from home but I can usually talk. I’m at *** - *** -***

Judi

Thank used so much, I’ll give you a call tomorrow

You can always PM members for a personal message! Please never give out your personal information on a public forum. I’m happy to see someone fixed the phone number!