Major Health Anxiety Post CVST

[purplepenguin997]

In November 2022 I was admitted into the hospital for bloody stools and extreme pain in my abdomen. After being hospitalized twice in November, I had a colonoscopy and found out i have Ulcerative Colitis.

In December of 2022 I had a really bad headache right underneath my eyebrow and couldn’t turn my neck (the right side was extremely sore). The next morning I had a seizure and was again admitted into the hospital. The doctors had found out I had thrown a clot to the brain (Cerebal Venous Sinus Thrombosis). The doctors aren’t sure why this happened (i am 22 years old, i was 21 at the time of the seizure/clot).

(I just recently spoke to a naturopathic doctor who has a feeling that the reason behind the clot/seizure is a high dose of Prednisone and high estrogen levels. both are apparently linked to blood clots.)

All of these health issues literally came out of nowhere. I mean i was someone who can be considered healthy. I’ve never broken a bone, been hospitalized before all of this, never had to be on any medication aside from medication when having things like a fever or a cold. Now i’m on steroids, blood thinner and an anti seizure medication. I am also taking Infleximab to treat the UC diagnosis.

i’m scared all the time. constantly feeling like i’m looking over my shoulder. i can’t be away from my mom anymore, i’m nervous all the time. like i don’t want to be away from her in case anything happens. I’m currently staying at a friends house right now literally as i’m typing this but i know i can’t sleep tonight and i just want to go home honestly. I felt a slight sharp pain in my neck on the right side and freaked myself out and now i can’t calm myself down.

I just had a head CT a week ago. Everything came back normal and fine. Nothing my neurologist was worried about at all which is good. The hemorrhages are stable but they did say there was some tissue that was affected but nothing to be worried about. But yet i still can’t calm myself down. I don’t want to live my life in fear. i want to live freely again. The doctors told me they expect a full recovery since i’m so young which is great news. the clots should just dissolve on their own.

i just want this all to go away.

I question why this happened to me. I question how likely it is for this to happen again. I question if i’ll ever be able to live my life without this lingering fear ever again.I question a lot lately. Because right now i’m scared all the time and i hate it. I hate feeling like i’m burdening my mom and making her annoyed because i’ve been clingy with her for the last 6 months and she’s just trying to live her life.

Right now more than anything i wish i was home with my mom and also just had some extra reassurance that everything is okay and will stay okay.

[GillyA]

Hi, I can completely understand how frightened you are. My history is similar (although no colitis). I was initially diagnosed with epilepsy in my early 30s, then a CVST 3 years ago (they think this forming had been a very slow process over many years). Investigation then diagnosed APS, a clotting disorder.

The conclusion is that the APS is at the root of everything, causing both the seizures and the CVST. When all these diagnoses came through it was in the middle of Covid, I was totally on my own and a mess. I can remember screaming in fear and frustration at what was happening and being in tears for days - it was awful. But things did slowly get better.

CVSTs are very rare (only a few hundred cases a year in the U.K.). Because of this you should have been referred to a haematologist to see if they can find out a cause and treat if more than short term treatment needed. If seizures have persisted you should also see a neurologist.

But there is good news. Your clot was diagnosed and successfully treated. Epilepsy is normally managed. You can (and I am) be well and normal on a day to day basis.

But don’t underestimate the psychological hit you have taken, it’s not at all surprising you are scared. I am too, I had a bad seizure and fall in December. injured myself so badly I ended up having surgery and am still not back to normal either mentally or physically.

So first of all see your GP and, if you haven’t already, get the specialist referrals you should have had. Ideally get reffered to a big teaching hospital, not just your local district hospital. For me this helped me get hold of the psychology - feeling as though I’m getting good (great) medical care and am more in control.

Then look at how you can get psychological support. It may be through the NHS or privately. Often in the U.K. employers (or university) will have an employee assistance programme, which is confidential and includes psychologists.

There is no shame in needing support in such a scary situation. Just having a safe space where you can admit the fear is likely to help.

For me the thing I hang on to is that despite everything that has happened to me, I am well the vast majority of the time and apart from not driving lead a normal life. Part of this is a decision and determination that I’m not going to think of myself as unwell or disabled. I’m me, and I have some health problems, but so do many many other people.

It’s worth saying that many people who have long term or complex health problems have to be their own advocate, research their conditions and press for proper treatment.

I wish you all the best and hope you can find your own way through all this.

[Hidden]

Oh, how very scary and horrible for you, It is normal to be scared and afraid after such a worrying experience. If I were you, I'd go back to the doctor and ask for some anti-anxiety medication, and perhaps to be referred to someone who could help. As you say, you can't live like this. We who have survived blood clots and embolisms and things do suffer from enormous anxiety, and I don't think the medical profession quite realises how much!

[Jennifer53]

I'm sorry you are going through such a difficult time right now. It's normal to be this fearful. You have had a major incident. Try telling your mom how you feel. This fear will pass. You will learn how to live with your condition. I'm 11 years post stroke and after about a year I was able to joke about it. New pains still frighten me but I ask my husband to come check on me if I go for a nap. I believe the docs are right about your recovery because you are so young.