Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

I hope I am posting in the correct group. I honestly can not believe I found this group and hope I can find someone living with chronic CVST. In 2016, I was driving when I became aphasic, had double vision and lost the use of the right side UE and LE. I was on Bluetooth and EMS found me because I was in a company car on the freeway with my left foot on the brake on the side of the road. I was taken to a world famous hospital and the symptoms subsided and while I was being given the NIH stoke test they started again. I was rushed for a CT and nothing showed up. I was admitted for Observation. EEG and additional tests.... nothing. Husband says I’m stressed. Yes, I have stress but nothing that I can’t handle. Hospital gives me Lexapro and I’m to follow up with neurology. Meanwhile, I’m telling them I can’t swallow my food and I had the worst headache of my life and I never have headaches. Fast forward 3 years... I continue see neurology for hemiplegic migraines...and they send me for a MRIa and MRIv and there it is, the Thrombus on the Left side. Now had it been acute, I would have had treatment, now that it’s just sitting there, I can’t seem to get any answers. I’m going for more tests but what do they do? I’m not sure of size or decreased blood flow, but I take daily medication for severe migraines, which I never had before, vision loss and memory loss. I would like anyone to share their experience. Thank you in advance.

Hi @dphillips3108 and @gtownsend. Welcome to Connect.

I wanted to introduce you both to eachother and also to @segalit in hopes that you all can provide support for each other.

@dphillips3108 it must be heartbreaking to watch your daughter struggle so much. How is she doing now? How is she being treated at this time?

@gtownsend those migraines must be so frustrating since you had never had them before. How are you being treated at this time? Can you do anything to lessen their severity?

I take 200mg of Trokendi and 20mg Amitriptyline daily. I never experienced headaches before that day I have vision loss and daily headaches along with slight memory loss so I make lists. I am so thankful for my neuro team because they continued to support me and look for answers. I know my outcome could have been much loss!! I am just not sure if treatment options moving forward???

Hi my name is Placy

Hi Placy, it’s nice to meet you. Do you have CVST? If so what is your current treatment? Is it acute or chronic?

Hi, @gtownsend - nice to meet you, and I'd like to add my welcome to Mayo Clinic Connect. Has your doctor talked with you about what is next in your cerebral venous sinus thrombosis (CVST) treatment?

@dphillips3108 - how is your daughter doing? Is she still in the hospital?

@segalit - do you have a diagnosis of cerebral venous sinus thrombosis (CVST)? How are things going with taking a break from working and from college?

@runnelht - how are you adapting to the vision change due to the CVST and the swelling pushing on your optic nerve you talked about?

Hi Everyone,
In November 2018, I was diagnosed with CVST after visiting urgent care and than my doctor over the span of 7 days. The initial diagnoses was probably a “sinus infection” but when I started crying in the office she sent me for a CT scan.

I got a call the same day that I needed to go to the hospital to have an MRI bc I had a possible thrombosis. I remember being hysterical and scared but somewhat relieved they found the reason for my severe headaches, blurry vision and vomiting.

Just had my follow-up MRV and the doctor said it’s great news because they vein has partially opened allowing blood to flow and I’ll be off blood thinners in 2 months.

I feel very fortunate because my vision came back to normal and the headaches aren’t every day. I’m trying to get used to my “new normal” and navigate the anxiety of having this happen again.

Hoping to hear some other stories and if what we went through has a low risk of happening again.

BTW...the cause was determined to be from oral contraceptives after all blood tests came back normal.

Hi to all...i experienced my cvst almost 9 months ago now. It happened the end of June 2018.it started with a thunderclap migraine and a hematologist I was referred to determined it was caused by a protein s deficiency. Had a massive bleed from what doctors said. Just curious as to everyone's current condition. Currently I find myself to be really wimpy for lack of a better way to phrase it and I think it might be because of the blood thinner but not sure.

Wow!! I started this thread back in 2011 - and here we are 9 years later still getting replies. I'm sorry for those who have gone through this recently - but happy to let you know that my health continues to do well. I had my CVST in 2010 and they have never really understood what caused it. I was on birth control, but no other risk factors. I have had no recurrences. I've done a lot of research over the years - happy to keep the conversation going for those who are new to this.

@egee19 @runnelht @segalit @dphillips3108 @gtownsend - wondering how things are going for you (or your family member) with the cerebral venous sinus thrombosis (CVST)? I think that all of the members in this discussion would benefit from your responses.