Chronic CVST and living with seizures, mini strokes. Have this?

Hi @jacoblamb - wondering how your health is lately? Are you still having the strange ear symptoms you mentioned?

@lisalucier

Hi Lisa,

yes but it's improved slightly as it happens mostly in the morning as i'm waking up. one thing i did notice upon looking at my medical lab records is that i've had low electrolytes (sodium, potasssium, and chloride) for 2-3 years. apparently that can mess with your nerves and muscles including those in the ears. i recently (1 month ago) corrected my levels for all 3 to healthy levels but i haven't seen the benefits yet. Do you know if this just takes time or am i going down another wrong track?

@jacoblamb - that sounds astute to be observing and working to rectify your electrolytes. As we are not medical professionals here and serve as a patient support community, I don't have medical expertise to lend for your question.

Hoping that other members in this CVST discussion may have ideas on how it works to raise your electrolytes and get some benefit from doing so, including @jprenewed78 @fowler0822 @bextruelove. A few other members have commented on working on electrolytes in a post-COVID discussion and also may have ideas for you @janetbender @shirljk @welchllb.

Hello! I had a possible Tia back in February of 2020. It happened right before I had a appointment with a hematologist and I did not skip the appointment but mentioned it to her. She just recommended I go to the ER if it happens again. 2023 I had a focal onset aware seizure, but I did not go to the ER because I thought it was maybe just a weird one-time thing. It was not intense. Jan. 2024 had another focal seizure. This one my entire body felt like it was shaking/vibrating. I went to the ER for this and they detected a clot in the right lateral transverse sinus and sigmoid junction. I was given a referral to the stroke center. A couple months later I was diagnosed with the CVST and started on Eliquis. I was kept on Eliquis for 7 months and then taken off of it because the clot did not change. I was advised to take baby aspirin. July 2025 had an intense focal seizure and was seen in the ER. After a couple hours they asked me if I wanted a CTV of my brain, which I replied it might be a good idea to do. The clot was essentially unchanged. I had gotten a second opinion before they stopped the Eliquis. Both providers were NPs, and I did not wish to see those providers again. I attempted to be seen by another highly sought after cerebrovascular neurologist which ate up a couple months. They told me the doctor would review my file and get back to me if he wanted to see me. I never heard back from him. It's hard to find cerebrovascular doctors that treat CVST. I contacted the prior medical facility that had started me on Eliquis to see if I could see a doctor. They called me back like a month later letting me know I need a referral again. In the meantime, in January I had another focal seizure. I have pronounced tinnitus in my right ear after I have the seizures. I get aching pain at the base of the right side of my skull and sometimes I get an aching pain just down below my ear. After this last one, I have had bouts of lightheadedness when seated. When laying down my throat feels swollen at times. I'm still trying to get in to another neurologist. A month ago requested my PCP to send the referral into one closer to where I live. After waiting a couple weeks I contacted them and of course they said they didn't receive it. Then I went and faxed it. To complicate matters, I have a mass between my chest wall and my 7th rib that I was scheduled to have a lung resection done back in August. It was canceled because of the seizure in July. The thoracic surgeon said she would not do the surgery if there was a chance I could have a seizure. I don't understand why a thrombolysis isn't done to remove these for us. It makes no sense to me whatsoever to leave a clot in your brain. Just because it's not occlusive doesn't mean that it can't be causing issues. By the way, I think mine was likely formed after my first bout of Covid in Oct. 2020. A nurse questioned if the TIA I had in early 2020 may have been caused by it also, but I did not have any typical symptoms of covid at that time. I was having temperature spikes, just felt totally wiped out, and not necessarily nauseous but like my GI was active a lot. I will also add that I was having weird neurological symptoms 4 months post Covid-full body tremors, tingling in the center of my head, tremors from the waist up.