My RCVS Story

[Guest Lt555]

I am 45 years old, and in June I had a stroke. It started in late May with 4 thunderclap headaches over a period of 2 weeks and 3 visits to the ER.

 

"Luckily", I had one episode at my doctor's office so she saw first hand what happened and got me an appointment with a neurologist. They found nothing in the ER on either CT scan or lumbar puncture. By the time I went in there the 3rd time, I think they thought that I was just a drug seeker - as I told them specifically which drug helped relieve the headache the first time.

 

I had an appointment with a neurologist on the same day as the 3rd ER visit. He was completely dismissive, thought it was a migraine and gave me medicine for it. I basically begged for strong pain medication "just in case" the thunderclap headache happened again. He was extremely reluctant as he thought I was likely to abuse it, saying it's easy to become addicted. He even griped about it to the medical assistants outside his office, while waiting for approval for an MRI.

 

That same day I had my MRI, they saw a bleed and I was admitted to hospital. Following day I got a traditional Angiogram, where they saw multiple vasoconstrictions. At that stage I was doing fine on narcotic pain meds, so the plan was to take a "wait and see" approach while on pain meds and stay another night in hospital. That night I had a stroke, luckily I was in hospital.

 

After the stroke I was in Critical Care for a week. Immediately after the stroke (1 day) I had severe vision issues and overall weakness and inability to move. After a couple of days, the main issues was weakness in my right hand. I did suffer from overall weakness, but I think that was mostly due to being in bed - and it got better once I started to move around.

 

I was released after 2 weeks, and did physical and occupational therapy for another few weeks. The only residual issue I had/have is a numb toe!

 

In August, I felt numbness in my right hand, up my arm and into my face. When the numbness hit my tongue, I decided to call 911. While nothing was obvious on the MRI, another traditional Angiogram, showed constrictions in a different area. The neurologist said it was a TIA.

 

In September, I had another episode of "weirdness" in my right arm. I thought that I had just been at the computer too long. The next day, it seemed like my arm felt after the August event.

 

In October, my right pinkie finger went completely numb, when the numbness resolved after about an hour, I had tingling in my hand. When it happened again the same day, I got worried. When it happened the third time, I went into the ER. The neurologist on-call thought it was a nerve problem, and that I had hit my funny bone. I was just happy to be able to go home. Two days later it happened again.

 

In the past week, I have had an MRI and EEG. The MRI was normal, considering my history. The EEG doesn't seem unusual, and better from one I had in August, although that is not the final report.

 

Currently, the prognosis for the recurrent numbness is possible seizures. I have been prescribed seizure medication, but having a hard time coming to terms with yet another issue, and medication.

 

Prior to the stroke I was overweight, had high blood pressure for which I was on medication, and taking both SSRI's and birth control pills. All of these are linked with stroke and RCVS. Hormones are also linked, and this is something I am interested researching more. I also had periods of "stress headaches", I never officially told they were migraines and they didn't feel like them.

 

Despite the stroke and being off SSRI's, I have felt better than before and more "alive". As a bonus, I lost a lot of weight thanks to a total of 3 weeks hospital food. The latest episodes of numbness and possible seizures, have been a slap in the face. I do not want to take any new medications, and not willing to accept the seizure prognosis.

 

For me, having a neurologist that I trust and can talk to has made a huge difference. However, since RCVS is uncommon and is not really understood there is not a lot of information out there, and medical studies are often difficult to understand.

 

I am interested in connecting with other survivors to discuss similarities to the initial event and diagnosis, and in their own recovery progress.

 

Lesley

 

 

 

 

[Tina]

Hi Lesley a very warm welcome to BTG !

Thank you for sharing your story.

You have certainly been through it and hope you get some answers to help with your recovery.

If you look under the section:

Non-Aneurysm SAH or Perimesencephalic SAH you will find some members posts on RCVS.

Hope this helps.

Let us know how you are doing.

Take care xx

[Guest Lt555]

Thanks Tina!

 

I wanted to share my story, because there just isn't a lot of information about this syndrome. I hope it is helpful to others who might be in the same situation.

 

Lesley

[Peanut]

Hi Lesley,
I can't reply to your message for some reason.
I can relate to all that you have written. I had my little boy in January and 6 days later had a thunderclap headache. I was referred back into the maternity. 5 days later was sent for CT where they discovered the SAH. I had vasospasms and an MCA stroke afterwards and was eventually diagnosed with RCVS - hormone related. I spent a week in ICU ad the whole of my little boys first month in the Neuro ward.
Horrendous start to the year but glad to say I am doing well.

 

 

I lost my speech and whilst I regained most of it in my first month it does still give me problems sometimes. I also get the weak hand, tingling, weirdness thing. I still get it and have been diagnosed with seizures for which I take meds - not happy like you but hey I feel lucky I have made the recovery I have. My EEG was normal too.
Still sometimes have fatigue but last week started a phased return to work. Only 8 hours a week but its a start!
I hope your recovery goes well. Feel free to message me again. Hopefully I can answer this time.

Gail x

[BethB]

Hi Gail,

I also had a NASAH a few days after delivering my baby and then an ischemic stroke.  I spent 40 days in the ICU, and missed all that time with my 2.5 year-old and newborn.  I had four angiograms, and none showed the source of the bleed.  Because I responded to magnesium therapy, my neuro team concluded that RCVS made the most sense.  I was released from the hospital exactly one year ago today, but the recovery continues due to muscular atrophy from the bed rest and the effects of the stroke.  Doing my best to hang in here, with small children.  It's encouraging to have read your story.