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What does a stroke feel like? My experience

It was around 6:00 a.m. on Sunday February 25, 2018, when I felt as though I was struck in the head by lightning.

I experienced a horrible, surging pain and sat up. I immediately grabbed my husband and screamed, “I’m dying, call 911.”

It’s hard to put my experience into words, but if anyone remembers what the teacup ride at an amusement park is like, just imagine being on one of those.

Spinning at 1,000,000 miles per hour while not being able to focus. That’s what I saw if I opened my eyes.

If I attempted to let the tiniest amount of light in, I would catch a glimpse of the spinning and start vomiting violently. I did not have any pain at all, except for that one “lightning strike” at the beginning.

It felt like an out-of-body experience that I was watching from above my head. I was just trying to stay in control. There was a very loud whooshing sound in my ear, and my 10-year-old son was standing next to me, witnessing everything.

‘My face was tingling, my body was limp’

When I knew that my son was not at my side, I told my husband that this had to be death, and to tell everyone I love them, as I was convinced I was having a horrible seizure that would kill me. I was thinking about my son the entire time and hoping that I would make it out of this alive.

I felt a pulling sensation to the right, but it was as though my body wanted to stay left. And with any movement, no matter how slight, the spinning feeling became more intense. By the time the police and ambulance crew arrived, I was holding onto our bedframe for dear life.

When the paramedics started taking my vitals, I attempted to explain that my eyes felt crossed, but I could hardly speak. The medic told me that my blood pressure was high and that my blood sugar was normal, when all of a sudden I started to feel my legs and arms tingle. They were numb and very limp. I lost control of my bladder and was sweating so much that my clothes were soaked through.

By the time I got from my room to the ambulance, I could not speak at all. My face was tingling, my body was limp, and I was sweating and vomiting uncontrollably.

The hospital is only a 10-minute ride from my home but I have no recollection of the journey. The next thing I remember is waking up in the [emergency room] and seeing my husband, my parents, and my brother by my side.

After the initial neurological testing, the doctors told me that everything seemed to be normal. I had no classic stroke signs, such as a drooping face. I was administered meclizine to stop the dizziness and Zofran to stop the nausea.

When the doctors were looking at me, I was curled up in a ball on my left side. I had my eyes closed and was gripping onto the hospital bed.

I finally fell asleep and awoke a few hours later. I was told that I had experienced two strokes in the cerebellum area of my brain.

This area controls balance and accounts for just 2–5 percent of strokes happening today. I had had a vertebral artery dissection with a pseudo aneurysm that caused the stroke.

The following day, I was transferred to a room on the neurological floor.

By this point, I’d had several evaluations and my emotions were running wild. I felt blessed and lucky to be alive, but I was still having some horrible thoughts. Will I die tonight? Where will my son be? Will I ever get back to work? Will I have another stoke? I instantly felt that my life had taken a different turn.

I panicked, wondering when the medication would wear off; I was still very off-balance and dizzy. I tried to read my phone or iPad, and I realized that my vision was not the same. My eyes were fluttering and I constantly saw spots and flashes.

Ten days on

Ten days after the strokes had occurred, I was still in hospital. My physical symptoms included hand and leg weakness on my right side, vision issues, short-term memory loss, constant nausea, neck pain, dizziness, lack of balance, no appetite, cluttered speech, and intermittent ear ringing.

I was set to be discharged to a rehabilitation facility, but I wanted to get home to my family. My best friend is a nurse, and she very bluntly told me that if I went home, I would not thrive.

This was going to be an extremely emotional decision, but I knew I had to go. I was admitted to the Kessler Institute for Rehabilitation in Saddle Brook, NJ, nearly 2 weeks after my stroke. I set myself the target of being released on March 24, 2018 — my husband’s 50th birthday.

During my stay, I received occupational, physical, speech, and cognitive therapy for 3–4 hours per day. The Kessler Institute was amazing, but I was homesick, confused, depressed, and anxious, even though I knew that I was blessed to still be alive.

While I was on the neurological therapy floor, with many others who had suffered severe brain injuries, I started to question why. Why did I survive? Why am I here? Why did I get this lucky? I quickly grew more depressed and now realize that I was experiencing what is sometimes referred to as survivor’s guilt.

I experienced right side peripheral vision loss, which was almost a blessing as I was unable to look at the many others around me suffering.

I was emotionally exhausted at this point. I felt that my mind needed to heal for my body to follow.

I spent time with Reiki healing specialists and even joined tai chi classes, both of which helped my emotional state. However, my physical symptoms were not improving and I felt more alone than ever. I was surrounded by my family, who tried hard to help and understand me, but I was still scared to death.

My 4-year-old dog, Silka, was extremely happy to see me and is a huge part of my recovery now. I requested therapy dogs at the rehab center every day, which helped me greatly.

I have registered Silka to become a service dog and am currently looking into home training classes for her to help better service me.

It has now been just over 100 days since I left Kessler. My family cannot believe how far I’ve come, though I often struggle to share their optimism.

My emotions trap me, and sometimes I wonder whether people know how much I’ve changed.

I want people to treat me as the person they knew before the stroke, but also to have respect for the person I am today.

It hurts when I hear that my friends are getting together for a girl’s night at the bar and I’m not there. Maintaining friendships has been hard, and my previous job is being interviewed for, although the door remains open for me if I’m able to return.

I often wonder if I’ll ever be a dental assistant again. It was my passion, but I cannot risk dropping medical instruments during a procedure if my right hand loses grip.

I’ve had two falls since I’ve been home, both due to being off-balance. I injured my knee slightly during the first, and I’m currently sitting with my foot wrapped in bandages as a result of the second.

These injuries prevent me from physical therapy, but I can continue my cognitive and occupational therapy twice each week at the Kessler Institute. And, as of yesterday, I have also been approved to see a psychologist.

I am positive that I have [post-traumatic stress disorder] and I am unable to sleep at night, for fear of it happening again. The second I start to sweat for any reason, I quickly become anxious and panicky.

I fear strangers, I sometimes don’t believe test results or doctor’s opinions, and I have no appetite. As night-time rolls around, I often take a Xanax to calm the storm. Lying down, or even turning to the right, is still an issue, as it causes discomfort, which, in turn, increases my anxiety.

When I got home, I did not sleep in my bed for 3 weeks. I wouldn’t even enter the bedroom, and we would refer to it as “the scene of the crime.” I have now formed a routine with my husband so that I feel more comfortable doing so. I cry often and I’m an emotional roller coaster…but it is getting better.

‘Take one day at a time’

One of the hardest things has been that if people can’t see your issues, they often go unnoticed or ignored. Just because I have a cane and may not make eye contact with you, it doesn’t mean I’m not human.

Just because my speech is cluttered or I can’t find my words, it doesn’t mean I’m stupid. I was the person taking care of you and consoling you while you were having your oral surgery.

That was me, and I’m determined to be that person again — no matter how long it takes.

I have recently had another magnetic resonance angiogram scan and continue to make progress in my cognitive therapy sessions.

I have also joined an under-60s stroke support group, and I have been in touch with a brain injury support group in New Jersey.

They have several social events, where you can meet others who have been through something similar, and I can’t recommend this enough to others in my position.

Only do this when you’re ready though, and not when everyone else thinks that you’re ready.

Share your story. Seek group chats online. Book individual therapy or counselling. Slowly start your hobbies again and do the things that make you smile. Take one day at a time at your own pace. There is no right or wrong way; there is only the best way for you.

I want to finish this article by mentioning the partners of stroke survivors. My husband has had to endure some horrible things through this, and watching a loved one potentially dying will wreak havoc on a person’s mind.

Partners need to be reminded of how good they’re doing, and they need to be given thanks and praise. We can’t forget that.

I still deal with daily fatigue — both physical and psychological — but I am starting to understand where these symptoms stem from, and this is very important.

To me, knowledge is power. By focusing on understanding my body, I am hopeful that this will provide me with more strength to walk down this new path of life.

Start thinking wellness, not illness.

I am Tracy Lyn Lomagno, and I am proud of my survival 🙂

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