Stroke – Lifey

Here’s a free collection of resources about stroke- Stroke blogs, videos, support groups, first-hand experiences and advice from people who’ve had a stroke, etc.

Jump to:

Stroke Blogs

Here’s a list of stroke blogs- blogs written by people who’ve had a stroke, or about strokes.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Home After a Stroke

homeafterstroke.blogspot.com

2018

Stroke Support Groups

Stroke Support Groups On Facebook

Other Stroke Support Groups And Forums

StrokeNet Message Board (14,327 members)

Stroke Survey

We’re surveying people about their experiences with stroke. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with stroke**

Stroke Symptoms

What symptoms did you experience before/during your stroke?

Pain in thumb muscle, brain fog, seized knee. (Jana, 31 years old)
Left side face weakness, left arm/leg weakness, fatigue, feeling foggy. (Michelle H., 32 years old)
Neck/head pain. (Charlotte, 32 years old)
The first symptom I was very aware of before being diagnosed with my stroke was my pace changed from my normal walking gait to a very slow gait. I wasn’t sure why I was moving so slowly. The next few symptoms involved debilitating vertigo and horrible nausea with vomiting. I found shortly after the vertigo began I could not walk or maintain my balance. During my stroke, I had horrible pain in my head and neck, and the left side of my body did not move the way I wanted it to move. (Carolyn, 33 years old)
Dizzy, numb right side, headache. (Sheena, 33 years old)
None. (Lydia, 34 years old)
I was having headaches. But I was pregnant and working a lot, so they’re not associated with stroke. (Shakeria, 34 years old)
Massive headache, euphoria, difficult walking and speaking, ears ringing, fuzzy vision. (Shannon, 34 years old)
Vertigo, headache, slurred speech, trouble walking, sweating. (Tiffany, 35 years old)
None really. My left leg was numb. (Christy, 37 years old)
I don’t remember, but I was told dizziness and left-sided weakness. (Elisabeth, 37 years old)
I had what I can only describe as a brain flash and the severe nausea and not being able to move from where I lay in bed. (Gina, 37 years old)
Headache, change in vision. (Shontelle, 37 years old)
Headache. (Emilyn, 38 years old)
Before, nothing. After, I was unable to talk, or move my right arm. (Becky, 40 years old)
Profound confusion, headache, nausea. (Brian, 41 years old)
Headpins and confusion. (Richard, 43 years old)
Feeling very sleepy. (Maretta, 44 years old)
Numbness at the back of my tongue, then drooling on the left side of my face and speech impairment. (Pierre, 44 years old)
None. (Antoni, 45 years old)
Dizziness, light headedness, blurred vision, numbness in fingertips (sometimes). (Jamie, 45 years old)
During…headache, projectile vomiting, right side, and couldn’t walk. (Robin, 46 years old)
No symptoms, my strokes were caused by a burst aneurysm. (Susan, 47 years old)
Immediate loss of power in the legs. (Cecilia, 49 years old)
Before: severeheadache dizziness during-face droop slurred speech left side paralysis. (Gillian, 49 years old)
Indigestion, head ache on the right side of my head and back pain on the right side. (Jill, 49 years old)
A really, really, really bad head ache. (Kimberly H., 49 years old)
Numbness on the left side of my face, which led to numbness on the left side of my body. (Gayle, 50 years old)
Brief numbness on entire right side for a minute or two a few times a day for 2-3 days prior. (Alana, 53 years old)
Headache, couldn’t use my legs. (Elizabeth, 53 years old)
Worst headache of my life and vomiting. (Maureen, 53 years old)
Before headaches, numbness in my arm, bouts of hearing impairment and eyesight during which I fell at work. They sat me in a chair- I was feeling ok- paramedics came I was talking to people before and as they wheeled me out. Felt ok though until paramedic said I think you’re having a stroke, then worried about effects but still very aware, even told them to hurry to get me to the hospital. There is something they can give me I’d heard about- the drug TAP- so I was cognitive enough once at the hospital when they asked me to lift or move limbs and I wasn’t able to. I couldn’t talk but I could hear and understand what was being said, could see and hear friends family and medical staff. Very scary not being able to respond verbally. (Debbie, 54 years old)
I was asleep when it happened. (Carol, 54 years old)
Dizziness. (Jun, 54 years old)
None. (Pip, 54 years old)
I woke up, and I already had my stroke. After my stroke, I could not speak, I could not walk. My limbs were paralyzed on the right side of my body. (Melody, 55 years old)
Dizzy, listed to the side, couldn’t stand, felt out of touch. (Maureen W., 64 years old)
Face droop, arm weakness, speech slurring. (Anonymous)

Stroke Facts

What are some interesting facts about stroke?

FAST. (Jana, 31 years old)
Occurrences among younger people are increasing. (Charlotte, 32 years old)
Vertigo, Imbalance, Perseveration. A stroke does not discriminate between young or old, male or female, genetic disposition or lack there of. Treatment for stroke is crucial. Do not let yourself be dissuaded from seeking treatment (even if you feel like you’re wasting everyone’s time). (Carolyn, 33 years old)
Doctors don’t always pay attention to symptoms. (Sheena, 33 years old)
That you can have strokes at any age. (Shakeria, 34 years old)
How differently or affects each person. (Shannon, 34 years old)
Strokes are not only for the elderly. (Tiffany, 35 years old)
There’s no real cure. (Christy, 37 years old)
Anyone can have them at any age. (Elisabeth, 37 years old)
The affected side stays weaker, some symptoms last forever: remembering things. (Shontelle, 37 years old)
Short-term memory retention, old memories still fresh like it happened just yesterday, even though it was from years ago. (Emilyn, 38 years old)
I now have an accent, I think that’s pretty interesting. (Becky, 40 years old)
Caused by a condition called Moya-Moya. (Brian, 41 years old)
A stroke happens in the brain. (Richard, 43 years old)
It can happen at any age. (Maretta, 44 years old)
How big the damage is in your body once the brain is affected. (Pierre, 44 years old)
Mine was a ‘watershed event’, my blood pressure dropped so low during open heart surgery that the blood flow to my brain was affected. (Antoni, 45 years old)
How much it can affect your emotions. How insecure you can become. Strokes can do so much to your body. They can completely change who you are. (Jamie, 45 years old)
It’s scary- they can come with no warning! I lost the ability to sneeze, and lost all emotions. (Robin, 46 years old)
Left hemorrhagic brain stroke affecting the right side of my body. (Cecilia, 49 years old)
Just because you look ok doesn’t mean you are ok. There are long term side effects, memory aphasia lack of confidence concentration noise sensitivity overload confusion slower thought processing balance. (Gillian, 49 years old)
The brain CAN grow new cells! (Kimberly H., 49 years old)
Not sure if it’s interesting, but it might be that my stroke was caused by my birth control. (Gayle, 50 years old)
Strokes affect young people, as well as elderly people. (Alana, 53 years old)
Never occurred to me to call 911, called my family instead. (Elizabeth, 53 years old)
They are life changing. (Debbie, 54 years old)
It can happen to anyone, young and old. Gains in recovery can be made much longer after the six month benchmark that most PT’s use. (Carol, 54 years old)
It’s unpredictable. (Jun, 54 years old)
It’s not age or health selective, and can hit you anytime, anyplace. (Pip, 54 years old)
I could not tell before what a stroke was. (Melody, 55 years old)

Stroke Pain Management

What’s your experience with stroke-related pain and pain relief?

Pain in elbow, knee. (Jana, 31 years old)
NSAIDS are not allowed if on a blood thinner after strokes. (Michelle H., 32 years old)
Constant feeling hungover. (Charlotte, 32 years old)
My body hurts when I wake up and when I attempt to go to sleep. It has been an ongoing battle to find medications that will deaden my nerve pain. Migraines have become more painful and difficult to treat. I wish some of the migraine medications were less expensive or had a comparable generic. (Carolyn, 33 years old)
Sleep was relief. (Sheena, 33 years old)
Headaches, muscle aches/cramps, migraines and tension affects everyday life. (Lydia, 34 years old)
I had mostly pain in my affected arm. Which subsequently went away after a lot of stretching. (Shakeria, 34 years old)
Lots of strange nerve pain… found nothing to help. (Shannon, 34 years old)
I have stroke pain. Doctor’s don’t acknowledge stroke pain, so I deal. (Tiffany, 35 years old)
Have lots of body pain. No relief yet, still trying to find what works. (Christy, 37 years old)
I get head aches. I can only take Tylenol because I’m on Xarelto. (Elisabeth, 37 years old)
My stroke was caused by a vertebral arterial dissection and still, 2 years on my neck hurts if I am tired, stressed or haven’t had enough food / water. I take a lot more pain medication than I used to sadly due to the pain. (Gina, 37 years old)
I had pain when my brain was healing from the bleed. (Shontelle, 37 years old)
I’ve had no pain. (Becky, 40 years old)
No long-lasting pain associated with my stroke. (Brian, 41 years old)
Exercise daily. (Richard, 43 years old)
Subluxation of my affected side left shoulder, the only pain relief is a shoulder brace. (Maretta, 44 years old)
I have pain and numbness daily, it’s not bad though. (Antoni, 45 years old)
Pain in shoulder, hip and back. Meds for pain. (Jamie, 45 years old)
I have RA as well, so pain is not new to me. (Robin 46 years old)
24/7 nerve pain in right extremities, including the right side of my face/gum area. (Cecilia, 49 years old)
I have left shoulder pain & both hips are painful. (Gillian, 49 years old)
At first nothing helped. I had a headache for four days. Nothing would relieve it. (Jill, 49 years old)
Initially I had a lot of nausea, and when I would get sick, my diaphragm would spasm because of my stroke, and I stayed in that state for a long time, and had to start muscle relaxers to stop that pain. (Gayle, 50 years old)
I had a thalamic ischaemic stroke, and developed CPS (Central Pain Syndrome) approximately four months after my stroke. I am in pain 24/7, and am on a ton of meds. My usual pain level is between 5-7 with pain flare-ups going to 9-10, and lasting 2-5 days, one to three times per month. Currently there is no cure for CPS. My pain moves all over my entire right side, and feels like pins and needles, burning, stabbing, broken bones, twisting and pulling of limbs, an ice pick jabbing into me. The slightest breeze burns, and cold water will cause a pain flare-up. If I attempt to walk much (eg. more than two aisles in a store), my legs will lock up from my groin to my knees, and I am unable to walk any farther, and am in excruciating pain. (Alana, 53 years old)
I’m taking gabapenin, but nothing seems to help 100%. (Elizabeth, 53 years old)
In the past 21 years I have had seven neurologists, and tried many medication combinations, and still have not found the right mix. (Maureen, 53 years old)
I had extreme pain in my affected side, particularly by shoulder down to my fingers. Leg wasn’t as painful but very spastic so still some pain. Touching my affected arm in any way was excruciating, which unfortunately wasn’t able to do much therapy on it. (Julie, 54 years old)
A lot of shoulder pain at the 3-4 month mark as my arm and hand started to come back. I popped a lot of Aleve, which I would not recommend! (Carol, 54 years old)
I do not take pain reliever drugs. (Jun, 54 years old)
I have a little if I don’t stretch. (Pip, 54 years old)
Untreatable, pain in affected left calf. (Anonymous)
I have no pain. (Melody, 55 years old)

Stroke Difficulties

What are the hardest aspects of life after a stroke?

Not being able to do what I used to. (Jana, 31 years old)
Fatigue, memory, concentration, having people understand you’re not who you used to be. (Michelle H., 32 years old)
Depression. (Charlotte, 32 years old)
Cognition. Realizing that there is more to overcome than the physical attributes of a stroke, there are also cognitive and emotional issues at play after a stroke. Regaining control of the physical was sometimes easier than learning some of my new cognitive difficulties. (Carolyn, 33 years old)
Dealing with fatigue, and finding new ways to do things. (Sheena, 33 years old)
Coping with my new personality. (Lydia, 34 years old)
Trying to do everything with one hand, especially when you have a toddler. I was also in school for my master’s degree, and have three classes left before receiving it. Also going from working steadily to not being able to work, or drive my car. (Shakeria, 34 years old)
Not being who I was before my stroke. Have a different way of thinking and emotions are harder to control and understand. (Shannon, 34 years old)
Feeling alone, people don’t understand, dealing with invisible deficits. (Tiffany, 35 years old)
The fact that a lot of the time your issues are mental, and people don’t think you’re handicapped. (Christy, 37 years old)
Remembering how to do things, or just remembering things in general (short term memory). (Elisabeth, 37 years old)
Trying to stop thinking it will happen again. (Gina, 37 years old)
Explaining to people what’s wrong with me, because they can’t see it. (Shontelle, 37 years old)
Physical mobility, self care, being fully functional. (Emilyn, 38 years old)
Taking care of my 10 month old daughter, and relearning how to be independent. (Becky, 40 years old)
Thinking through tasks. (Brian, 41 years old)
I’m expected to be normal for my kids. (Rachel B., 43 years old)
Being confused. (Richard, 43 years old)
Getting tired easily. (Maretta, 44 years old)
Being accepted and treated like others. (Pierre, 44 years old)
Aphasia, balance, eyesight. (Antoni, 45 years old)
Not being able to do simple tasks, and starting all over. Things never being the same again. (Jamie, 45 years old)
Memory, jumble words, can’t walk as my equilibrium is off. (Robin, 46 years old)
Total change of lifestyle from active and athletic, to being very physically restricted. (Susan, 47 years old)
Anything that has to be done with both hands is very difficult. I have to eat with my left hand all the time. (Cecilia, 49 years old)
Adjusting to a new ‘ normal’ Lifestyle changes learning limitations fatigue Family expectations not being able to work ,losing independence & self worth. (Gillian, 49 years old)
Losing the use of my dominant hand, and not being able to walk. (Jill, 49 years old)
Loss of independence. (Kimberly H., 49 years old)
Not being able to drive, I’ll be able to work, and the complete loneliness. (Gayle, 50 years old)
Going to the bathroom. I know when I have to go, but I can’t feel anything come out. It takes forever to wipe my rear end – it’s very hard to balance on my numb leg and arm, and wipe with my good hand. My bottom is sore! Doctor won’t even discuss. I lose my balance a lot. My fiancé has to help me walk. When my legs get locked up, I have to get pushed in the wheelchair (doctor doesn’t even know I have one). I have tinnitus sometimes. It’s very hard to cook. Hard to hold stuff in my right hand (affected side) – good thing I’m left-handed, but I still do most things right-handed. I have aphasia. Mostly finding words, spelling and numbers. I used to manage millions of dollars – some days I can’t add 4+7. Some days I can’t spell “that”. (Alana, 53 years old)
Not being able to use my left arm and hand. (Elizabeth, 53 years old)
Impaired visual field means no driving, chronic migraines, fatigue, left side impairments resulting in shaky left arm/hand and inability to run. (Maureen, 53 years old)
The paralysis not being able to use my hand or arm having to walk with an,AFO and cane re learning everything. (Julie, 54 years old)
Slowing everything down was hard, and also doing everyday tasks that once seemed so simple. (Carol, 54 years old)
Low self confidence, anxiety and depression. (Jun, 54 years old)
Immobility takes away your life friends and family. (Pip, 54 years old)
Walking, running, talking. (Melody, 55 years old)
Walking. (Maureen W., 64 years old)

Stroke Advice

What encouragement/advice can you give others who’ve had a stroke?

Never give up, it’s a long road but worth it. (Jana, 31 years old)
Rest is best right after, take your time with recovery, it’s a personal race. (Michelle H., 32 years old)
Slowly things come back & if you are still around to talk about it, you have been given a second chance to live better. (Charlotte, 32 years old)
Don’t give up on yourself. Just because you are not seeing results today; doesn’t mean it won’t happen in the future. Reach out and search for better doctors and treatment options, especially if your current doctor refuses to treat you (or if you have plateaued). Plateaus don’t mean the end of recovery, just that you need to readjust and continue your ascendance to new goals. (Carolyn, 33 years old)
Find a way. Things are different and it can be difficult, but try to accomplish a task by making it like a game where you just find a way. Even if it is a silly way. (Sheena, 33 years old)
Keep going, time is a healer, it will get better. (Lydia, 34 years old)
If you are dedicated to your exercises and determined to improve, you will get better. And it’s OK to have some negative days, but don’t dwell on it because it will not help you get back what you lost . (Shakeria, 34 years old)
It does and can get better. (Shannon, 34 years old)
Don’t forget the bad days, they make the good days that much better. (Tiffany, 35 years old)
Keep going, don’t stop. (Christy, 37 years old)
Keep trying. Don’t give up. Keep up with therapy. Do brain training games, etc. (Elisabeth, 37 years old)
Keep fighting! Your brain and body are an amazing thing and they will recover as well as they can. Keep strong and positive and get lots of rest. (Gina, 37 years old)
Don’t give up. Do the best you can to get back to your old self, but you’re a new person. (Shontelle, 37 years old)
It gets better in time. (Emilyn, 38 years old)
Just keep going, never give up! (Becky, 40 years old)
Keep living. (Brian, 41 years old)
Keep going, never give up!!! (Rachel B., 43 years old)
You will feel like you again. It takes time, so hang in there. (Richard, 43 years old)
Do physical therapy no matter how tired you are. Let your therapist know what goals you want to reach. (Maretta, 44 years old)
It’s not easy to accept whatever happened to the person. (Pierre, 44 years old)
The harder it is, the harder you have to try? (Antoni, 45 years old)
The first six months are so important for recovery. Stay strong. (Jamie, 45 years old)
Get therapy immediately, this is not something to mess around in. (Robin, 46 years old)
Keep a strong faith in God, and never ever give up trying to improve yourself. (Susan, 47 years old)
Have faith, and love yourself more. (Cecilia, 49 years old)
Adjusting & acceptance is hard. There is life after stroke get involved with local support groups learn to laugh at mistakes you make accept help & don’t push people away, you will laugh again! (Gillian, 49 years old)
Work hard in rehab. Endurance. EBDS prior to recovery. (Jill, 49 years old)
Do the exercises as your very knowledgeable therapists instructed. (Kimberly H., 49 years old)
Keep trying. Do everything you can to get anything you can back… like physical therapy and occupational therapy. (Gayle, 50 years old)
Never give up. If you don’t seem to have the right fit with your doctor, find another one. No one cocktail of meds for everyone. PT, OT, Speech very crucial – I wish I had gotten some – I had some crappy doctors at the beginning. (Alana, 53 years old)
Don’t give up. I wasn’t supposed to walk and I am. I wasn’t supposed to live though the surgery. (Elizabeth, 53 years old)
Keep moving, and keep asking your doctors for what you need. (Maureen, 53 years old)
Stay positive do as much therapy as possible. (Julie, 54 years old)
Be patient with yourself. Be consistent with your rehab exercises. Rest when you need to. (Carol, 54 years old)
Keep going, keep living, and maintain a positive (thinking) attitude. (Jun, 54 years old)
Keep fighting to get better. (Pip, 54 years old)
Never give up! (Melody, 55 years old)
Keep moving forward 😊. (Maureen W., 64 years old)
Every day, in every way, I am getting better. (Anonymous)

Stroke Diet and Exercise

What’s been your experience with diet and exercise?

Message my muscles. (Jana, 31 years old)
Exercise has been minimal because of work/finances. Celiacs makes diet easier. (Michelle H., 32 years old)
Always have been healthy eater & active. (Charlotte, 32 years old)
Eating and maintaining a diet has been exceedingly difficult. I felt no hunger or thirst for a long time in the beginning. The hospital and my doctors retrained me to eat at certain times of the day to stay healthy. Exercise came when I was doing Physical Therapy. (Carolyn, 33 years old)
I was a runner before my strokes. I couldn’t walk after. It took five years to walk confidently again and another four before I could run again. Now I can run four days a week, even running trail half marathons. Because I didn’t give up I can run again, even though that was taken away from me. (Sheena, 33 years old)
I’ve put weight on, and I struggle to exercise. (Lydia, 34 years old)
Now I do some form of exercise practically every day. If not every day, at least five days out of the week. I also reduce my sugar intake and stop eating a lot of red meat. (Shakeria, 34 years old)
It’s hard. (Shannon, 34 years old)
I watch what I eat and make sure I’m active. (Tiffany, 35 years old)
I’m always hungry now. (Christy, 37 years old)
It’s hard because I had lost all this weight beforehand, but I wake up (from what seems a coma) with all the weight back. I’m trying to walk, and eat right. (Elisabeth, 37 years old)
I am struggling. Because I tire so easily exercise is a struggle for me and as a result I have put on huge amounts of weight. (Gina, 37 years old)
I fall off and on that bus. Depression has a lot to do with it. (Shontelle, 37 years old)
I exercise religiously, and have a strict diet since my stroke was blood sugar related, and stress from work- trying to adopt a healthy lifestyle. (Emilyn, 38 years old)
Hard to motivate myself to eat healthy and exercise. (Brian, 41 years old)
I don’t feel hungry now ever, and I exercise daily. (Richard, 43 years old)
I try to get up and walk a little throughout the day. I’m diabetic, so my diet is pretty explanatory. (Maretta, 44 years old)
I’ve put on 20+ lbs that I just can’t get rid of… YET!!! (Antoni, 45 years old)
I don’t diet, and I try to walk every day. (Jamie, 45 years old)
I walk every day! I have a poor diet. (Robin, 46 years old)
Fish and vegetables daily; walking around the house. (Cecilia, 49 years old)
I put on a lot of weight due to lack of exercise & comfort eating.? Have joined slimming world now and have lost nearly 3 stone. I have difficulty walking distances & need someone with me due to balance issues, but I try to walk a bit most days now, weather permitting. (Gillian, 49 years old)
I’m unable to enjoy any food. Nothing tastes like I remembered it should taste. Weight loss. Enormous. (Jill, 49 years old)
Most of my exercise has been physical therapy, or with an athletic trainer who specialized in strokes survivors period, and my diet went from really bad initially, too much healthier, cutting out a lot of fats and carbs. (Gayle, 50 years old)
My diet has always been very good and healthy. Right after my stroke it took me one month to re-learn how to walk on my own again. Then I worked my way back up to 10,000 steps per day, and the weight was coming off. I lost almost 20 lbs. Since CPS started, I can no longer exercise. I’m stuck in a chair. I’ve gained all weight back, plus more. Doctor says I’m now obese, and I should bike or walk… LOL! Try swimming… I asked him if he was going to pay for it. (Alana, 53 years old)
It’s hard. Some foods are hard to eat. Moving is hard. (Elizabeth, 53 years old)
I walked with a cane for the first three years post-stroke. Rehab exercises and yoga have helped me remain somewhat flexible and strong. My weight has gone up and down. (Maureen, 53 years old)
Unfortunately not having the ability to stand for long and having 2 hands preparing meals is very difficult so my diet isn’t the best- I’ve become very lazy and addicted to watching TV so sadly I don’t get much exercise, I have to make myself get just to walk to the kitchen or bathroom- hard to motivate after 9 years of not being able to do the things I want in the way I want to do them. (Julie, 54 years old)
I cleaned up my diet and lost 30 pounds which I have kept off for almost four years. I exercise most days on a stationary bike and a Total Gym which I bought for myself. An investment in my health! (Carol, 54 years old)
A no animal meat diet makes me weaker. (Jun, 54 years old)
The more I exercise, the better I get. Diet- I ate well before, but now I just have to watch I don’t put on weight. (Pip, 54 years old)
I hate diets. Before stroke and after stroke. The exercise, I love. (Melody, 55 years old)
Stay healthy as much as possible. (Maureen W., 64 years old)
Not successful with either. (Anonymous)

Stroke Treatments

What’s been your experience with treatments (medication, etc.)?

Not been one medication since six months after my stroke. (Jana, 31 years old)
Mostly good, if a medication made me uncomfortable (Keppra), I talked to my doctor right away. (Michelle H., 32 years old)
Asprin for life. (Charlotte, 32 years old)
Being a young woman at the time of my stroke was interesting; I was placed on a Coumadin regiment for 6 months. My period came every 2 weeks as I progressed on the Coumadin. I had a D&C to see if that would alleviate some of the ongoing periods. I was given Meclizine and Zofran for dizziness and nausea. For my bouts of migraines, I tried numerous drugs and therapies to attempt to alleviate them: Dilaudid, Fioricet, Sprix, Zomig, numerous triptans, Medrol to break up cluster migraines, Nortriptyline, Gabapentin and Topamax as a regimented treatment plan, Greater Occipital Nerve Blocks for the occasional ice pick headaches, and Botox. For muscular pain, I was treated with Flexeril and then Skelaxin. For nerve pain, my current treatment has been Cymbalta. After my stroke, I was placed on thyroid medication. Some of these medications have worked amazingly well but the cost is too high to continue most of these. I have had a few interactions with some of the medications, Topamax gave me a kidney stone. (Carolyn, 33 years old)
I was on Warfarin for over nine years and had my PFO fixed in my 10th year, and now only take Clopidogrel. (Sheena, 33 years old)
No one seems to know what to do with me. (Lydia, 34 years old)
I now take a blood pressure medication though I never had high blood pressure before my stroke. I am permanently on blood thinner, but I did have a blood disorder before this stroke. (Shakeria, 34 years old)
I’ve felt like a test dummy with no results. (Tiffany, 35 years old)
It’s a lot of pills. It’s annoying. (Christy, 37 years old)
I take Xarelto, but I am clumsy because of left-sided weakness. So, I bruise all the time. (Elisabeth, 37 years old)
My physio has been amazing! I recommend going to a physio who knows your case and who can help you work around your limitations. (Gina, 37 years old)
I am not on any medication because of it, besides depression. (Shontelle, 37 years old)
Stroke causes other additional health problems like bradycardia due to blood pressure medications. (Emilyn, 38 years old)
Aspirin helps to clear my head. (Brian, 41 years old)
Confusing at first, but taking medication gets easier with time. (Richard, 43 years old)
Meds, no real experience. Treatments, I went through a not pleasant angioplasty. (Maretta, 44 years old)
N/A for meds. Rehab was helpful. (Antoni, 45 years old)
My experience has been good with meds. (Jamie, 45 years old)
Light pain medications. At first, a strict regimen! (Robin, 46 years old)
None, I got into a lot of hospital debts for ICU and confinement, that I couldn’t afford anymore for any maintenance medications, including therapy after four sessions that’s it. I am from the Philippines, have no medical insurance, and having a stroke in your 40s is considered a family tragedy. Most people have their stroke here in their 60s or late 50s. (Cecilia, 49 years old)
I was put onto statins & iv had 3 different types all gave me muscle cramps in my legs. Also on antidepressant antiplatelet & analgesics. (Gillian, 49 years old)
Plavix caused bruising. (Jill, 49 years old)
Some, Effexor (a different formula than I am on now). (Kimberly H., 49 years old)
I was put on just one baby aspirin a day. And taking Gabapentin for the neurological symptoms. (Gayle, 50 years old)
No real pain management, doctors who are familiar with stroke related CPS where I live. Insurance will not cover anyone else. Sticking with primary doctor that I now have. (Alana, 53 years old)
Do everything your therapist asks of you. It’s the hardest thing you will ever do. (Elizabeth, 53 years old)
Medication helped depression, regular deep-tissue massages, physical therapy gave me exercises I would not have known about. (Maureen, 53 years old)
The usual PT, OT. I have done HBOT, hypnosis and stem cell therapy capsules. I have residual balance issues, so I am trying to regain my balance, which has been very difficult for me. (Carol, 54 years old)
Side effects suck! (Jun, 54 years old)
I’m on no drugs. (Pip, 54 years old)
I take Aggrenox. It is fine. (Melody, 55 years old)
Get off antidepressants asap. (Maureen W., 64 years old)

Stroke Recommendations

Anything you’d recommend for someone who’s had a stroke?

Take your time,it will come back. (Jana, 31 years old)
Get to the hospital right away, note every/any symptom change. (Michelle H., 32 years old)
Rest a lot. (Charlotte, 32 years old)
You’re your best advocate. You know your body better than anyone else. Don’t give up. (Carolyn, 33 years old)
Be patient, and get all the therapy you may need- even mentally- and just try to find a way to live a new life in a fun way. Recovery is a long, slow process, but just focus on the little steps and tiny moments that make you feel good about yourself. (Sheena, 33 years old)
Talk about how you feel, no matter how stupid you feel. (Lydia, 34 years old)
Celebrate every gain, even if it’s the smallest thing you can think of. Because even the small improvements is improvement. (Shakeria, 34 years old)
Find a support group. (Tiffany, 35 years old)
Keep a solid support team- you’re going to need them. (Christy, 37 years old)
Find a support group online or in person. Share your story, don’t be embarrassed. (Elisabeth, 37 years old)
Rest, Rest and more rest. (Gina, 37 years old)
Go to support groups, they really help. Even Facebook groups. (Shontelle, 37 years old)
Have faith, stroke recovery is a long process. Push yourself to get better. As much as you can, be positive, have faith, and hold onto HOPE. (Emilyn, 38 years old)
Marijuana decreases anxiety. (Brian, 41 years old)
There’s life after to enjoy. (Rachel B., 43 years old)
Take all the help offered, it will get easier. (Richard, 43 years old)
Really work on physical therapy. (Maretta, 44 years old)
Keep at it! (Antoni, 45 years old)
Don’t give up. Exercise. (Jamie, 45 years old)
Don’t give up, and ignore the stares, they could never go a mile in your shoes. (Robin, 46 years old)
Get a solid good sleep every day, laugh a lot and a good sex is healthy, too. (Cecilia, 49 years old)
Join your local stroke support group, there’s people there that can relate to how u feel & give advice! Accept help. (Gillian, 49 years old)
Make sure you are exercised as soon as possible. My rehab only started four weeks after. (Jill, 49 years old)
If you can find an athletic trainer who specialized in stroke survivors, they could be your best opportunity to get more function back. (Gayle, 50 years old)
Read, exercise, eat healthy, rest, have patience. (Alana, 53 years old)
Develop a support system. Love yourself. Try to stay positive. (Elizabeth, 53 years old)
Educate yourself, tell people your needs, and never give up. (Maureen, 53 years old)
Take it slow. Recovery is a long and winding road. Eat well and exercise! (Carol, 54 years old)
Keep going, life does not end after stroke. (Jun, 54 years old)
Stroke survivors. If you can, the wonderful people, listen to them. The groups are fun. (Melody, 55 years old)
Rehab and lots of it. (Anonymous)

Stroke Resources

What specific resources have you found most helpful?

Groups. (Jana, 31 years old)
Online support groups. (Charlotte, 32 years old)
Groups online. (Sheena, 33 years old)
I found speaking to people who have been through what I’ve been through has been the best support. I also have a really supportive boyfriend who has helped me through everything. (Shakeria, 34 years old)
Fellow survivors and social media groups. (Shannon, 34 years old)
Facebook support groups. (Tiffany, 35 years old)
Family. (Christy, 37 years old)
Young Stroke Experience Facebook Group. (Elisabeth, 37 years old)
Facebook stroke groups / VAD groups online. ( Gina, 37 years old)
Resources from support groups. (Shontelle, 37 years old)
Seated aerobics exercise at YouTube Turbomed Afo. (Emilyn, 38 years old)
Family. (Rachel B., 43 years old)
Facebook groups and stroke clubs have all helped loads. (Richard, 43 years old)
The hospital that did my surgery really pulled out all the stops when they realized what had happened. (Antoni, 45 years old)
Learning from others in Facebook stroke rooms, and researching online. (Jamie, 45 years old)
The book “Strokes for Dummies”. (Robin, 46 years old)
Local support group, Stroke Association, gp support. (Gillian, 49 years old)
Stroke support groups, hearing from others’ experiences. (Jill, 49 years old)
Brooks Cljouse. (Kimberly H., 49 years old)
My doctors, nurses and the internet. (Gayle, 50 years old)
Facebook support groups. (Alana, 53 years old)
Books. (Maureen, 53 years old)
My stroke group on Facebook has been very therapeutic for me. (Carol, 54 years old)
Support groups online. (Jun, 54 years old)
The internet. (Pip, 54 years old)
Glendora after stroke. (Melody, 55 years old)
My husband. (Maureen W., 64 years old)
Stroke Facebook group. (Anonymous)

Stroke Stories

Share your stroke story.

It was a January morning and I was heading to my new job as an auto retailer, I forgot my work boots (which I don’t understand why) that was not like me to forget. Once I returned to the shop, I continued working. Around 4:30 pm I got a very sharp pain in my left thumb muscle but thought nothing of it and continued working as my shift was over at six. Once off, I headed for the bus stop as that was my transportation home. Before the bus arrived at the bus stop, my left knee started locking up and I was hoping that I didn’t fall on the bus but I managed to get on safe. Once downtown, I needed to switch buses to the one that went by my place. I successfully transferred. Now to walk home from the bus stop it was about five blocks. As I continued to walk, my knee kept locking up but I managed to get home before I fell. I was inside walking up my sister’s stairs (as I was living with her). I got about half way and fell into her railing and banged my nose off of it. She came rushing to the top of the stairs and helped me up. She knew the signs of a stroke and asked me to lift my arms so I did but my left was not at the same height as my right. She stated we needed to go to the hospital but we had to wait for her husband as they had a six month old son. He arrived home and we called a taxi cab as it would be cheaper than an ambulance. Once I stubbed into the taxi my sister told him we had to hurry to the hospital as I was having a stoke. We got to the hospital and they took my vitals. We then went to admitting and they were asking me times and stuff and I had brain fog going on. Next thing I know, I was taken into a room in the back. I had a tongue ring at the time and they asked my sister to take it out. She said I’ve never done this sorry if I pinch you. (She did lol) but that is the last thing I remember until I woke up and was thirsty. Little did I know I was airlifted an hour and forty five minutes north of that hospital and already had brain surgery. I had to relearn how to walk and was in physio for eleven days then I was transported back to the first hospital and was there for a month and half. Then I continued out patient therapy for about nine months. My daily routine consisted of stretching my muscles and massaging my tendons. I think the most I took away from this experience was life is short and not to focus on negativity. Enjoy life and never give up. (Jana, 31 years old)
September 2011. I was getting ready for work and for some reason I was extremely tired after just waking up. I decided to get to work incase anything happened. I started getting a headache and the foggy feeling in my head. I went to take a pain reliever, and the water poured out the left side of my mouth. After that, my left arm was weak and my left leg followed. My co-workers called my husband to bring me to the hospital. I was rushed to a stroke facility in Providence, years later, now I know I have Moya Moya Disease. (Michelle H., 32 years old)
I wrote this eight years after my strokes. It has been 10 years now, but I like what I wrote then, so here it is: 1) Someone may think that because it has been eight years I should just be over it by now and why would a stroke anniversary matter anymore, leave it in the past, you have moved on. I have moved on, but today is sort of like a birthday. July 30 for me will always be the day where I left my old self behind. In some ways I have moved on to create new and better parts of myself, but that doesn’t mean that I don’t still sometimes wish I could go back to being who I once was. I still deal with the side effects every day. I have improved a lot over the years, but I have a long way to go, and some symptoms will likely never go away. The stroke birthday is like a celebration of how far I have come. 2) I still get upset about how I was treated at the first hospital after my stroke. It started with the paramedics telling me to just walk or they would stick me with needles, and to stop trying to get attention and telling me nothing was wrong. Then the nurses that wouldn’t get me a blanket even though I was shivering. Then the nurse yelling at me because I was getting sick on the floor instead of going to the bathroom. Then the doctors ignoring my symptoms and sending me home on anxiety medicine when I couldn’t walk, or control my limbs or open my eyes. It does still bother me sometimes, I just wish that doctors would recognize stroke in young people. The negative hospital experiences were wiped away by those nurses and doctors and therapists at the second and third hospitals who were so caring and compassionate. Nurses are heroes, I really admire them, the negative ones don’t matter because of the compassionate ones. 3) I still cannot eat cucumbers to this day. The night it happened I had cucumber sandwiches and for the first few years I would gag at the smell. I can stand the smell now, but not the taste. 4) Learning to walk was a lot harder than I thought it would be. 5) Horseback riding and shooting played a big part in my recovery. The shooting really helped with my control and the riding, my balance. I spent a lot of time trap shooting after my stroke, watching my score go up over the weeks was great motivation! 6) I was always able to see after my stroke, but I often couldn’t connect what it was that I was seeing. It was almost like I was in a daydream and I could see something or someone, but it just wouldn’t register. For example, a lot of times someone would be right in front of me and talk to me but I wouldn’t register that someone was there that I should respond to. When I came out of that zoning out (what I called it) I would jump in fright from not knowing someone was there, even though I could see them. I only get this way now when I am dealing with my stroke fatigue. 7) Before my stroke when I was working (biotechnician) I always made my PCR charts and calculations for the next day, at the end of the day. When I went back to work part time l saw my calculations in my lab book for July 31, and it gave me a strange feeling. I never again prepared notes for the next day because I didn’t know if there was going to be a next day. I also had to do calculations in the morning before my brain got foggy towards the end of the day. 8) It has not left me, it never will leave me. I still have to find new ways to do basic things. Stroke fatigue is very real, and I struggle with it. Sometimes I just need a little understanding. Yes, it makes me happy when I can pour milk into a cup without spilling. The first thing I thought after I found out it was a stroke was “not now.” I am not glad it happened, but I am glad it happened when it did for me, being young for it isn’t fair, but I have chance to recover for longer, and I can learn how to be unique about being strong and can keep pushing farther. I will never be normal again, but I was already weird to begin with. (Sheena, 33 years old)
I suffered a cerebellar ischemic stroke at age 31. It went 12 hours undiagnosed in a hospital ER. (tiffany, 35 years old)
On April fools day of this year (2017) I woke up from a nap with my left leg feeling funny. Like it wasn’t there. I took my two dogs for a short walk, then went inside to use the restroom. I then fell off the toilet two times. After the second time I realized something was wrong and yelled for my husband who proceeded to call 911. I then went by ambulance to my local hospital and then on an air plane to Via Christie in Wichita, where I spent the next six days. (Christy, 37 years old)
I woke up one day in April 2014 (I was only 34) to sign for my new house, but I couldn’t function right. I somehow got ready, and signed for it despite not knowing I had a stroke probably that morning or in the night. Eventually, my parents were convinced something was wrong, and kept pushing doctors to find out. After staying in a neurotherapy facility, I recovered enough to move into my new house finally, and get a part-time job in my original career as a graphic designer. I live alone and independent. (Elisabeth, 37 years old)
It was six days after the birth of my daughter. I had a really bad headache. Even though I was nursing her, I gave my husband formula so I could rest. I woke up to use the bathroom, and couldn’t see clearly. I was bumping into things. I tried to sit on the toilet to urinate, but ended up on the floor. I couldn’t unlock my iPhone immediately, but eventually I called 911. The technicians didn’t think someone my age had a serious condition. They took me to one hospital, tests were ran, then they came back to take me to the specialist hospital. My husband and mother were called. I was in ICU for two weeks and therapy for two weeks. I lost my right side. (Shontelle, 37 years old)
I was 19, at work, when I started feeling confused and nauseated. We went on break; I got in my car and drove home, without telling anyone. During the drive, I got a flat tire; didnt even notice. Got home, went to bed. My parents came home 2 hours later, saw the car in the driveway, and came to my room to ask me what happened. I can’t remember that conversation at all; only know it happened from what they told me after the fact. (Brian, 19 years old)
I started feeling odd, so I rang an ambulance myself. I was found collapsed in the rear of my van, and rushed to hospital. (Richard, 43 years old)
I had an ischemic stroke last September 2016 and until now my main issue is my balance and my left shoulder is very weak and still non movable. (Pierre, 44 years old)
Like I said above, mine was due to a drop in my blood pressure during surgery. My wife would get so mad at me… I’d walk right up to a wall when I was trying to go to/through the door. I’d trip and fall outside, rather than use my cane. (Antoni, 45 years old)
Age of stroke: 42. It was evening, and I was getting ready to make soft tacos for dinner. I was standing at the cabinet and started getting dizzy (this was happening several times a week). I yelled at my husband, he ran in there knowing something didn’t sound right, and I fell into his arms. He helped me to the living room, and I sat down. I still felt a little weird, so I decided to go to bed. On the way down the hall, my left side was tingling. By the time I got in bed, my right side stopped working. I wasn’t sure what to think, and wasn’t in a big hurry to get to the hospital. By the time the ambulance got there, and I got to the ER, they told me I had a ischemic stroke. I believe I spent four days in the ICU and a month in rehab. That was a couple of years ago. I can walk now using a hemi walker (I have no balance) and have a big limp. My arm is better, I can use it for the most part. I probably got a little over half of it back. It’s still a struggle every day. (Jamie, 45 years old)
I woke up, stepped into the shower and somehow crawled out, got dressed, crawled to the couch, yelled for my son, and he dialed 911. (Robin, 46 years old)
06/16/15 I had a stroke, and could not walk, very limited movement when I got out the hospital, but I had to recover quickly out of necessity. We are only three in the family- my husband and our only child/daughter, and they both have to go back to work and school. I have to tend to myself most of the time. (Cecilia, 49 years old)
I was 45 my marriage had broken down. I was stressed trying to keep things normal for my kids, trying to sort out were to live and hold down my job as a nurse. I was drinking a lot and not sleeping. I made a decision to leave the marital home, when I was packing my bags, I took my stroke. I left my marital home in an ambulance & never went back. I was in the hospital for 10 weeks. The first 2 weeks are a blur. I was incontinent & lost my left side to paralysis. I had physio every day for an hour and gradually learnt to balance and walk again and move my left arm and hand. I was left with a sensitivity deficit in my fingers. I had no home to go to on discharge as the rental I was hoping to go to was unsuitable. There was talk of a nursing home, I wasn’t happy. My family found me a private rental bungalow to move to on discharge thankfully. I had 12 wks of O.T. At home. Which helped, along with family help I can now say I’m happy. I joined my local support group that was definitely a life saver at a low point 2 yrs on I have formed new friendships with a great bunch of people similar to myself. (Gillian, 49 years old)
48 years old. I was brushing my teeth looking at myself in the mirror. My left leg suddenly went from under me, and I fell to the ground. I was alone on the floor for 15 hours. Someone found me. I could not get up. I did not know why, it was very scary and cold. (Jill, 49 years old)
At 48 years old I had numbness in my left cheek, which kept spreading and spreading to my left arm got numb, and even though I’m a registered nurse, I refused to believe it was a stroke. I went to the hospital, and the neurology nurses said they thought I pinched a nerve in my back. And then after going through the MRI machine I learned it was stroke. I can’t drive, can’t work and it’s sometimes a very long, hard road, but my family has been supportive, so I have been able to thrive through that. (Gayle, 50 years old)
I was a 32 year old marketing manager for a skincare company. On the evening of December 19, 1995, my boyfriend (now husband) and I met friends to exchange holiday gifts. We left early because we both had flights the next day. I dropped him at his apartment, and then went home to pack. While packing I developed a headache, so I took Tylenol. Soon, I started throwing up. I thought, “Oh no, I’m sick. I don’t have time for this.” I got into bed with the worst headache of my life and soon felt like I was falling backwards, although I was lying on my back. I woke up at 6am when my alarm went off. I tried to roll over to turn it off, but my entire left side was numb, so I couldn’t. Luckily there was a phone on my nightstand. I called my boyfriend and got his answering machine, so I called 911. The paramedics came, and took me to the hospital. By now, my boyfriend was with me. In the emergency room I remember asking him to call my office to tell them I’d be late (HA!). I woke up in the ICU, and was told I had had a stroke. My MRI showed a blood vessel that had gone into spasm and squeezed closed. I was in the ICU for four days and a regular room for three days. (Maureen, 53 years old)
I was 50 years old. Stroke happened in my sleep. Left side affected as well as balance, so I need a walker to walk on my own. My hand was paralyzed for a few months, but I am able to use it now, but not 100%. I cannot carry a plate, but I can hold things for my right hand. It is more of a helper than a doer! (Carol, 54 years old)
I had a stroke in June 2015, now I have to take maintenance drugs to prevent another episode. (Jun, 54 years old)
It’s still ongoing. (Maureen W., 64 years old)