BethB

Hi Lori, Thank you for your reply, and I apologize for my super delayed response. How is the school year going for you? Have the headaches subsided? Are you feeling a bit more like yourself? How is your baby doing? I'm happy to share my nearo team's advice, which was underscored by my Ob/Gyn and rheumatologist. I was also advised not to have more children unless via surrogate, but that's not an option for us, so we are now done. I also must avoid many medications such as cold medicines, SSRIs, and anything that is a vasoconstrictor. (I was shocked that the peppermint essential oil I used to use as a natural headache remedy is a very potent vasoconstrictor.) I also was advised against all chiropractic work and any deep massage involving the neck and spine. Overall, I'm feeling better, thank you, despite some lingering issues with muscle tone, extreme weight loss, and digestion. I'm also adjusting to my "new" brain due to the pinprick strokes, and to minor paralysis on my right side that has affected coordination, my handwriting, speech, and appearance. I just have to keep telling myself that I am thankful to still be alive, and that I'm here with my family. I'm based in NYC. If you are near or near-ish to the city, I would love to connect in person sometime. This is such a rare condition, and you're the only other new mom I've met who had the same diagnosis. Wishing you well, and thinking of you and your family!

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.

Thank you, Subs! I have just now found someone with a story very, very similar to mine. It's extremely encouraging to be able to connect with this community. I deeply appreciate this site and your help.

Hi Lori, My name is Beth, and your story sounds so very similar to mine. I was 39 last July when I had an SAH/postpartum RCVS with vasospasm followed by an ischemic stroke. The hemorrhage occurred nine days after the birth of my second child. I also spent several weeks in the ICU and have been in various therapies for months to recover from the stroke effects and the muscular atrophy caused by bed rest. With a newborn and a 2 1/2 year-old, it's been an immensely challenging year. I am also a teacher, though I've been at home with my children since this all happened. It is very encouraging to know there is one other person out there. My neuro team said this condition is extremely rare, affecting approximately 1 in 20,000 women.

My NASAH happened nine days after my daughter was born in July 2016. I then had severe cerebral vasospasms while in the ICU and twelve days after that, many pinprick strokes. This was diagnosed as hormone-induced RCVS, or Reversible Cerebral Vasospasm. I'm a year out now, and am still struggling to conquer aphasia and rebuild muscles while raising two small kids (three and one). Are there any other RCVS survivors out there? I'd really like to connect. Thanks, Beth