Cerebral venous sinus thrombosis (cvst)

Hi everyone! I’m not diagnosed with CVT but have been dealing with neurological issues for several years. About 3 years half of my face started tingling and I had severe head pressure and pain, nausea, uneven pupils, twitching, etc. I was sent home from the ER after they gave me IV fluids and basically told me I was being dramatic. Last year the same thing happened and I finally saw several doctors. I had an MRI with and without contrast but all I heard back was it looked fine. Today I finished a workout and realized my vision was off and had a headache. I looked in the mirror to see my pupils drastically different sizes (+ just overall very dizzy). I’m also on birth control and today is the second day of the month.
I find it hard to believe it would be anything like CVT considering it’s been so long and the MRIs (that I know of) didn’t show anything out of the ordinary. does anyone have experiences like this or with MRIs not revealing the issues?

Hi @makingfriends, you'll notice that I removed your personal email from your message above. Because Mayo Clinic Connect is a public forum, we recommend not sharing personal contact or identifying information.

Megan, Thank you for your willingness to share your experience with Cerebral Venous Sinus Thrombosis (CVST) with other members. It must've been frightening for your young daughter to witness your episode. Have you been able to talk to her about it?

Hi all,
I just wanted to post an update - it’s been 9 weeks since I was diagnosed with a CVST and I am symptoms free (only recently) and doing fine. If anybody past or future wants reach out and share your story with me, I’d love to connect. Best wishes my friends, stay strong

Sorry I had to reread this, yes it was a protein s deficiency. I would love to her more about your story if you want to share it.

Hello, I hope you are feeling better. Was it a protein s deficiency by Chance? My name is Megan and my story is be similar thunderclap, lab work determined protein s deficiency all with the CVST of course, I was diagnosed august 2020 so pretty recently. I’m scared and I don’t know what to expect.
Do you have any updates?

Hi all,
I’m Megan. I was diagnosed with a CVST late August 2020. Onset was sudden within 48 hours I went from feeling fine to a severe headache, light sensitivity, nausea and vomiting. I went to the ER after following up with my local doc. and after describing a thunderclap headache to the ER doctor was put in a CT scanner and within 2 hours I was on a flight for life to a bigger city with a larger neurology ward. I was terrified and this all happened in front of my 6 year old daughter and my husband. She was supposed to start first grade that day. The drive for them was 6 hours and I can’t imagine how scary that was. I was in the hospital for just under 2 weeks, had “extensive” clotting one of which was 6” long and the width of a pencil. They were waiting for me to feel better or for me to have a stroke. I had tests conducted daily, I was in good hands. Thankfully, I felt better and was released and have been home for about 3 weeks now. I have vision issues in my left eye, I woke from a nap and my vision was drastically changed. It was as if oil had been smeared across the lens of my left glasses- everything was blurry and it felt like there were tears forming in the inside of my eyes, running down inside my face, which felt numb. The eyesight is still blurry, but not as bad. I experience multiple headaches daily, my house is totally blacked out due to my photophobia. I am working on walking around a bit but mostly I’m still recovering. I can’t do much and that makes me feel guilty when I see how hard everybody else has to work to make up for mom’s absence. Watching my loved ones watch me go through this has been tough but I was never without family (except for transport) and I can be grateful for that. I feel supported in every way, but dealing everything this diagnosis comes with; fear, uncertainty, wait and see mentality, intense pain, sedation, medication schedules... is a lot. I’m happy to find this group, I’m sorry for your struggles but it was relieving to hear your stories and I thank you for sharing them. Just wanted to reach out and share mine

Thank you & yes, after visiting Mayo Clinic- my outlook on my health changed completely. Although this is lifelong, it was comforting knowing I was in the best hands possible and them laying everything out on the table for me. The great detail that each & every professional went into was astonishing! They truly care about their patients and their understanding. It is possible to move forward with your illness and put it behind you to live the very most ‘normal’ so to speak, life as possible. It does not need to manifest itself day-to-day. And I feel that Mayo Clinic gave me that hope again. I left Minnesota feeling like I had my life back again, very bittersweet. A feeling I will never forget.

I was diagnosed with FND- I joined the group and I appreciate you sharing that with me! 🙂

@mvoss8626,

I'm so glad you found answers and have a plan of care. Despite your complex diagnosis you seem to remain upbeat. Is this true?

It sounds like being told you had functional neurological disorder was also a new diagnosis. You may be interested in joining this discussion in the Brain & Nervous System group:

"Functional Neurological Disorder" at https://connect.mayoclinic.org/discussion/functional-neurological-disorder/

I went to Mayo Clinic in February and was cleared to fly as long as I’m on medication. Initially, I think my doctors were concerned of an extreme case of having a hemorrhage or an aneurysm or something because of the pressure. Especially because I had been traveling long 15 hour flights not taking any blood thinners.

I absolutely did. I spent the entire month of February in Rochester & after countless testing, appointments, etc...hematology informed me I have a rare blood clotting disorder called hypodysfibrinogenemia. My fibrinogen component causes my blood to clot (qualitative lower than quantitative). I will be doing genetic testing next month. Most likely unable to ever have children, they said. Neurology was fantastic, I actually spoke with the radiologist directly and he explained the blood clot’s detail in my brain to me. In correlation, the neurologist explained that the CVST has not decreased- and will not ever decrease in size. My blood clot has formed a blood clot around a blood clot and it will be there the rest of my life. Which=blood thinners indefinitely, which I already presumed. They did muscle testing as well (very painful) and diagnosed me with functional neurological disorder. My body’s response to the blood clots. I am in neuro PT & OT. I still have symptoms from the clot, but with some med adjustments and now Botox for headaches, it is more manageable. I also had protein in my urine. They did not take that lightly and did the appropriate follow-up with nephrology. I am also a lupus patient on Plaquenil. The fluid in my lungs was gone taking the medication. Had a great work-up and team of doctors & very impressed by how my case was handled. I have peace of mind now. I know I must co-exist and always take my medication. They informed me the risks of blood clots occurring even with medication, but I know what to look for. Mayo changes your life, thank you to all that helped!