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I had an eye exam yesterday, because I have been having so many headaches and issues with floaters they dilated my pupils to get a better look. They found I have a bleed on my left eye. It looks ok, no inflammation or anything else she could see with all the tests. She said the usual causes are high BP, diabetes, and high cholesterol. as far as I know these are not an issue. I am being treated for POTS just started on florinef about 3 weeks ago. I probably wouldn’t be concerned if I wasn’t struggling with such bad headaches. I am on toperimate for migraines. just wondering if there is something else I should be worried about having EDS hypermobility? I go back in three months for a check up…
I had an eye exam yesterday, because I have been having so many headaches and issues with floaters they dilated my pupils to get a better look. They found I have a bleed on my left eye. It looks ok, no inflammation or anything else she could see with all the tests. She said the usual causes are high BP, diabetes, and high cholesterol. as far as I know these are not an issue. I am being treated for POTS just started on florinef about 3 weeks ago. I probably wouldn’t be concerned if I wasn’t struggling with such bad headaches. I am on toperimate for migraines. just wondering if there is something else I should be worried about having EDS hypermobility? I go back in three months for a check up…
Oh boy, eye exams via the internet! Yikes. “Bleed on my left eye”– where is the bleed? I’m sort of assuming it is in the fundus, but it’s not clear. What DOES jump out at me is your Rx for Topamax and Florinef. Those kinda-sorta have conflicting effects on our intra-cranial pressure (Topamax has an ingredient to lower it, Florinef can raise it). If you want me to look at your symptoms checklist (under articles and handouts), it will give me an idea if your doctor may want to switch your Topamax to the ingredient that decreases intracranial pressure. And it may be worth going off of Florinef, meanwhile to see if the bleed resolves. Being on both Florinef and Topamax is much like one spouse voting Democratic and the other one Republican — they can cancel each other out. Sort of… 😉 You wouldn’t be near Texas, would you? Thanks!
Hi Thanks for responding to my post 🙂 I am in a small town in southern Saskatchewan, Canada…Very far from Texas!! My optometrist didn’t mention where specifically the bleed is. I guess my biggest concern with my headaches is that they haven’t figured them out yet; it feels like I have a lot of pressure in my head. I can’t bend over to pick anything up. I guess my concern is, could pressure in the brain cause a bleed on the eye? or EDS related? I have had an MRI and a CT to check for an aneurysm and they tell me those are fine but I am not convinced they are looking for anything other than the aneurysm so it might not be fine and I think I need a lumbar to test pressure in the brain but my Dr. here won’t/can’t do it which means I need to go about two hrs. away. The only blessing right now is my cardiologist understands EDS and dysautanomia (sp?) issues. I just need to be patient. I will have to go onto another computer to look at the check list, my laptop can’t open it. I will post on that as soon as I can.
Hi Thanks for responding to my post 🙂 I am in a small town in southern Saskatchewan, Canada…Very far from Texas!! My optometrist didn’t mention where specifically the bleed is. I guess my biggest concern with my headaches is that they haven’t figured them out yet; it feels like I have a lot of pressure in my head. I can’t bend over to pick anything up. I guess my concern is, could pressure in the brain cause a bleed on the eye? or EDS related? I have had an MRI and a CT to check for an aneurysm and they tell me those are fine but I am not convinced they are looking for anything other than the aneurysm so it might not be fine and I think I need a lumbar to test pressure in the brain but my Dr. here won’t/can’t do it which means I need to go about two hrs. away. The only blessing right now is my cardiologist understands EDS and dysautanomia (sp?) issues. I just need to be patient. I will have to go onto another computer to look at the check list, my laptop can’t open it. I will post on that as soon as I can.
Hi myainsel, You likely know how important I think it is that we get our RAW DATA, right? 😉 I’d highly recommend getting a copy of your eye exam, including any photos, and Heavens, go ahead and ask them where the bleed is! I think it is important that you know. Have you ever had an MRV? If you are not draining venous blood properly, depending upon the location of the blockage, yes, it could cause bleeding. An MRV should tell you. You have described that pressure feeling for a while now. Has anyone tried to reduce your pressure with Diamox? Lumbar punctures are NOT a good idea for us, because we often don’t heal well, and I’ve seen patients with leaks that continued for MONTHS, or that reopened even years later, which can be a disaster, frankly. I know you are far away (although I had two patients from Canada for our clinical treatment trial!). I wish I could get you here! Are you in the southern portion — any where near the U.S.? Perhaps I can find someone to help you. (But please bear with me, as I am INUNDATED right now!). Yes! The checklist will help, if you haven’t already sent it! 😉
Is an MRV an MRI with dye? if it is, no I have not. My CT had dye though, not that that helps. It is very difficult to get an MRI in Canada. A specialist has to requisition it and they don’t like to do it because it cost the government money. Its very hard to get in to see a specialist. I can probably get one done privately. I will look into that tomorrow, I see my GP. I understand about toperimate and florinef are cancelling each other out. The way the cardiologist explained it to me is I am not getting enough blood carrying O2 to my brain. when I was is the hospital the only way they could stop my headaches was to put me on O2. I do notice a difference on florinef, I feel like I actually get air when I breath. My head felt clearer and have started to have memory return. But about 2 week into taking it my headaches started getting out of control again. I spoke to my cardiologist today and he told me to stop taking florinef for a few days to see if it helps my headaches. What medications are recommended to treat POTS/dysautonomia symptoms? if any?? I will also talk to my GP about Diamox. Thanks for taking the time to reply! If I could come to Texas I would! I may take you up on a referral to someone a little closer to the boarder though. 🙂 I was thinking about my headaches, they are over that left eye, and that left eye is the one that droops and that side of my face goes numb. I’m starting to wonder if there is something to this bleed!!
Is an MRV an MRI with dye? if it is, no I have not. My CT had dye though, not that that helps. It is very difficult to get an MRI in Canada. A specialist has to requisition it and they don’t like to do it because it cost the government money. Its very hard to get in to see a specialist. I can probably get one done privately. I will look into that tomorrow, I see my GP. I understand about toperimate and florinef are cancelling each other out. The way the cardiologist explained it to me is I am not getting enough blood carrying O2 to my brain. when I was is the hospital the only way they could stop my headaches was to put me on O2. I do notice a difference on florinef, I feel like I actually get air when I breath. My head felt clearer and have started to have memory return. But about 2 week into taking it my headaches started getting out of control again. I spoke to my cardiologist today and he told me to stop taking florinef for a few days to see if it helps my headaches. What medications are recommended to treat POTS/dysautonomia symptoms? if any?? I will also talk to my GP about Diamox. Thanks for taking the time to reply! If I could come to Texas I would! I may take you up on a referral to someone a little closer to the boarder though. 🙂 I was thinking about my headaches, they are over that left eye, and that left eye is the one that droops and that side of my face goes numb. I’m starting to wonder if there is something to this bleed!!
Yes, we usually like to order it with and without contrast (it is a different dye from a CT, though. Fluorinef is one of the drugs that doctors use to treat POTS “traditionally”. I’m not traditional, though! It DOES help if you have venous insufficiency, causing blood pooling (most of us do), and it helps if you have low blood volume (many of us do). BUT, it increases intracranial pressure, too, which is lousy. 🙁 Now, if your pulse ox is low, or if you are not getting enough oxygenated blood to your brain, oxygen and/or more fluid absolutely helps. It sounds like your headache was either a migraine (vessels in the brain become large very fast) or it was from high intracranial pressure. The oxygen causes the arteries/arterioles in the brain to become narrower (they don’t have to dilate in attempt to get oxygen to your brain any more). When they become narrower, the volume in your skull lowers, and the pressure declines (as does the pressure headache). I WISH I knew someone to refer to you! I would go there! ha. You may want to watch my video about how to find a doctor. I hope to shake up tradition a bit, because I *really* don’t believe that symptomatic treatment is the best way to go. I’m working on hitting the cause of the symptoms. 😉
thank you for the explanation about the O2! That is great to know. My GP couldn’t explain why it worked he related it to a hyperbaric chamber…I saw him yesterday because I needed some relief from the pain and the only thing he would prescribe was prednisone for yesterday and today.20 mg It stop the worst part of my headache within 2hrs. I asked him about Diamox and then he threw out a name of another drug I had never heard of. He said he would look into Diamox. I see him again tomorrow…I have a referral for a neurosurgeon, not sure how long it will take to get in to see him and if he will be the kind to listen? I don’t like taking prednisone but at least I know it does something. He got the report from the optometrist and he though it was significant.
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