I’m six month post SAH bleed. I didn’t need clipping or surgery. I was in ICU for 9 days. I feel I have no right to complain. I went to outpatient PT rehab for a while. I’m very blessed to not have suffered any physical damage. But…there’s that but…
My brain feels so sluggish. I have eye strain and brain pressure issues have started becoming worse. I’m with Mayo In Phoenix now. Because it’s believed I had a venous bleed, Banner never ran a MRV. I’ve had two angiograms, MRIs, MRAs, CTs with no cause found of my bleed. My new neurologist ordered a MRV and epilepsy imaging plus EEG. I have moments where I blank out and just stare forcing myself to “snapi out of it”. The pressure behind my eyes is getting worse and my optic nerves were just checked and appear swollen.
I probably have intracranial hypertension. Anyway, I am a naturopathic doctor and ran my own clinic. I closed it after this happened and am just sitting here at six months post stroke beating myself up because I am not better. I can’t focus. I have patient charts that need closing. I can’t concentrate and think!
Fortunately my husband is working and able to cover all the bills. I feel guilty I’m not helping with the money. He’s been a gem and just wants me better. I feel so lost. I’m 63 years old. I started back playing tennis but have had to stop due to the increase in symptoms of pressure in my brain. Last night I all of a sudden had this “event” where the pressure behind my eyes made me feel so badly I threw my glasses off and told my husband. I asked for ice packs and gabapentin. I also felt very anxious. It wasn’t painful but it felt like my eyes were being stretched and it was unbearable. After about 30 minutes I felt better and we decided to wait to go to the ER. I slept last night and feel okay today but so tired that I started to cry and feel sorry for myself.
My imaging is November 11th. I hope I’ll have some answers.
Good morning Laura! We rarely have members who get an MRV, f you don’t mind, I’ll share what it is -Magnetic Resonance Venography -imaging with contrast to visualize blood vessels. Yes, folks I looked it up.
In all the imaging you’ve had, they didn’t detect an aneurysm but deduced whatever type of issue, the blood went into your subarachnoid space? Yet, they couldn’t figure it out and stopped looking? I hope I’ve got the correct. Have you had a lumbar puncture to measure your CSF which lead to your self diagnosis of IH? I know my ophthalmologist has mentioned looking for IH when he does my yearly medical eye exams due to some meds I’m on for another issue. He started looking the first time I went to him after my rupture and before the meds because I was telling him about my migraines, the horrific eye pain, etc. When they did the MRs and CTs did they use contrast dye? I know they’ve used contrast dye for my angiograms so I’m assuming you had dye for those. Hope these questions don’t sound rude, I am by nature an extremely inquisitive person, it’s one thing my rupture didn’t take away.
Sounds like an awful lot of contrast dye in a short amount of time. When I was in NSICU, I had a lot of CT with contrast, but I was on an IV then. I’ve developed an allergy to it and my neurosurgeon would have me drink a lot of Gatorade and a lot of water daily for several months after an angiogram. Have you kept hydrated to help flush it out?
Did the ice help? For me, I like a warm tea bag to help reduce swelling and pain for my eyes. It’s something Grandma taught me when I was little, it worked when I’d get irritants in them, worked when I’d burn them welding, works when my allergies get acting up. I don’t know if it will work for you. It may also work for me because Grandma never got off that pedestal I put her on. She was born in 1895, grew up in the Allegheny Mountains and knew more about plants than anyone I’ve ever met. She also lived by the “signs”. I think she could have written for the Farmer’s Almanac😂
Your husband sounds like a great guy. I’m glad you have his support. It’s extremely important we have a good support base, something often overlooked or not even thought of until we’re knocked down by health issues or traumatic events.
Hang in there, be kind to yourself, do some relaxation breathing. Vent as much as you need with us to help keep your stress level down. Perhaps set a number of clients to close out every day. Take long breaks between each one. I’m thinking that must be heartbreaking to do. Hopefully the MRV, EEG and epilepsy imaging will give the Neurologist what you need to move forward. Please don’t be a stranger.
Glad that you have imaging studies scheduled. If intracranial hypertension is the cause of your symptoms, and can be verified on your imaging studies, at least they know the culprit and can advise you on possible treatment.
Sending you healing hugs. Sorry that you’re experiencing the symptoms that you described.
The neurologist thinks I have IIH. He is waiting to do the spinal tap after my MRV. My last imaging was in September. I also have some new inflammation in the Falx area. Forgot to mention that. So they are rechecking that.
Thanks for your suggestions. I do hydrate well especially after gadolinium contrast.
Sorry to hear you have eye pain and migraines too! This is no fun. I started taking walks. I can’t just sit around anymore. They help mentally for sure!
Girl, you’re keeping me on my toes! Thanks, I really mean that! For those who don’t know what Laura is adding here’s a link https://www.imaios.com/en/e-anatomy/anatomical-structures/falx-cerebri-1553797108#. Our brains are really complicated with a lot of structures along with all the bits and pieces. Good thing our brain docs know all of them.
I rarely get headaches since she installed my stent just for clarification. And a big heck ya to walks! Going to walk around with the dogs in a bit before I do my plethora of PT exercises😂
Hello, just wanted to add my support to you really not got much to add but … you have been through a lot and I think we can be very hard on ourselves when we are adapting really well to the changes and challenges we are all facing. I hope you get some answers from your doctors and your husband sounds like a gem. We are very lucky when we have great people around us, I know I would be lost without mine. Big hugs
