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hello all, im not sure what to write honestly. I'm really glad I was able to find this forum. I felt really alone for awhile. And I apologize in advance if this is the wrong topic to post in, or if my post is too long ūüėě

I guess I'll start with my story. On August 2nd 2017, it was about midnight. I was 25 at the time, exactly 4 weeks postpartum holding my newborn son. I was walking to the room that my husband was sleeping in during his break from night duty. As I approached the room, the hallway started to spin and I held the wall, screaming nonesense to my husband. I ended up having a right arterial dissection. I was able to get my son on the bed before I fell. My husband had no clue what was happening, so he called medics. 

I was in and out of the hospital in 24hrs, had a couple problems with my dexterity and walking, but i was fine? The neurologist at the hospital told me it was caused from a car accident I was in earlier that year. He said it would heal up and id be fine. Great! Don't have to worry about having another one!!!!

Wrong. Beginning of March this year, I started having dizzy spells, But they would pass. I figured it was because I hadn't eaten enough that day; at least thats what my husband assured me of. On March 14th, around midnight, I had a left ischemic stroke. The initial right dissection never healed completely, and launched a blood clot into a left artery. Took me 3 days to get to the hospital, thought I had a severe ear infection since I couldn't walk straight and my eye was drooping. I mean, I couldnt have another stroke, right? I was 27, my 28th birthday was in 2 days, my daughter was going to be 1 in a week, my 2 year old son was starting to form sentences, my husband was overworked: I COULDN'T have another stroke.

I'm lucky: not one deficiency that didn't clear up. Being 28, fortunately age is on my side. But I'm mentally unwell. Panic attacks constantly, starting about 1 month ago. Not sure why this anxiety started 5 months post stroke? Whenever I dont feel well, like if my head hurts or I'm nauseous at night, I believe im having another stroke. Nights are always the scariest for me, since both of my strokes were late at night. Even though Im seeing my primary neurologist, a neuroradiologist, a hematologist, a psychiatrist and a therapist consistently, i cant shake the feeling that im going to have another one. Theres no surgery to help. Turns out i was born with small fragile vertebral arteries. I can only rely on medication for the rest of my life. I dont mind that; it is what it is. But research says that those with 2+ strokes doubles the risk of dying within the next 2 years.

I take all of the medications given to me, same times of the day. I am 20lbs short of a healthy bmi. No drinking, no smoking, nothing. I feel like I'm finally getting my life together, but the panic attacks won't stop. I cant breathe, I cant swallow food.

Does anyone have any insight? Please. This is not a sympathy post. Please don't tell me to "buck up" or "get over it": my 26 yr old husband tells me that frequently. I'm grateful for what i have, and im so so grateful to have found you all; im not alone anymore. Do those who've had 2+ strokes have any chance to live? Am I going to see my kids graduate high-school, college, meet my future grandchildren? My grandmother didn't even survive her 2 strokes, the last one killing her at 62. I'm just afraid my clock is ticking too fast and I'm unable to enjoy it.


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Welcome Jana as I always like to say: to the club none of us ever wanted to be a part of. You will be communicating here with some great folks of all ages and from around the world. I'm 70 year old now. I had a brain bleed stroke that pretty much took out my left side. It has mobility but very, very little sensation. I think it was from a concussion I didn't know I had a few weeks before. My"anniversary" is Feb. 14, 2015. Valentines Day! You know that saying "It takes one to know one"? That applies 10 fold here. We all get it. Check back and you will find a lot of support and answers to at some of your questions. Know this , there are many whose lives have been flipped upside down by a stroke. TTYL

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Jana, Your fears are shared by many of us about ourselves, and each person has to find his/her way of coping with the "what ifs". I'm no different from you in respect to the reason for your anxiety: I, too, am afraid of having another stroke even though my first and only stroke was 13 yrs. ago. I still take anxiety meds to ward off panic attacks. One of the things that helps me is to look at it this way: Researchers are looking for averages or the most frequent occurrences.They only mention in passing 

those  who don't fall into the averages. To borrow from your example above, the researchers could have said something like: "The  average age of the people that we studied was 66, and they had their first stroke by age 64..." (My example here is purely fictitious but used to make a point. ) The point being that very little is said about the people who were less than 66. Those people were outside their averages, just as you could fall outside average of some people who had more than one stroke.
   I think that I probably did not explain that well. Know this: Each stroke is unique to the person who has it. Yes, each person bears some similarities to other str0ke victims, but is also different in some ways.  BECAUSE OF OUR DIFFERENCES, IT MAY NOT BE USEFUL TO COMPARE YOUR STROKE TO OTHER'S. Find out,instead, the cause of your own stroke, if you can, keep taking your meds. as you are, and look to the future of those 2 beautiful kids who need their Mom. BEST, BECKY

 

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7 hours ago, becky1 said:

Jana, Your fears are shared by many of us about ourselves, and each person has to find his/her way of coping with the "what ifs". I'm no different from you in respect to the reason for your anxiety: I, too, am afraid of having another stroke even though my first and only stroke was 13 yrs. ago. I still take anxiety meds to ward off panic attacks. One of the things that helps me is to look at it this way: Researchers are looking for averages or the most frequent occurrences.They only mention in passing 

those  who don't fall into the averages. To borrow from your example above, the researchers could have said something like: "The  average age of the people that we studied was 66, and they had their first stroke by age 64..." (My example here is purely fictitious but used to make a point. ) The point being that very little is said about the people who were less than 66. Those people were outside their averages, just as you could fall outside average of some people who had more than one stroke.
   I think that I probably did not explain that well. Know this: Each stroke is unique to the person who has it. Yes, each person bears some similarities to other str0ke victims, but is also different in some ways.  BECAUSE OF OUR DIFFERENCES, IT MAY NOT BE USEFUL TO COMPARE YOUR STROKE TO OTHER'S. Find out,instead, the cause of your own stroke, if you can, keep taking your meds. as you are, and look to the future of those 2 beautiful kids who need their Mom. BEST, BECKY

 

Thanks Becky. That was explained nicely. "They" say mine is probably one and done. I hope "they" are right. Maybe because after all this time I am pretty sure it was from a fall when I hit my head a couple weeks prior. The thing for me was I was 4 months short of 65 and had been retired 5 years already. Not how I pictured my later years but I'm here. It always makes my heart ache when I read the ages of some of our members. Back to the life not being fair thing guess. God Bless, Wil

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17 hours ago, Willis said:

Welcome Jana as I always like to say: to the club none of us ever wanted to be a part of. You will be communicating here with some great folks of all ages and from around the world. I'm 70 year old now. I had a brain bleed stroke that pretty much took out my left side. It has mobility but very, very little sensation. I think it was from a concussion I didn't know I had a few weeks before. My"anniversary" is Feb. 14, 2015. Valentines Day! You know that saying "It takes one to know one"? That applies 10 fold here. We all get it. Check back and you will find a lot of support and answers to at some of your questions. Know this , there are many whose lives have been flipped upside down by a stroke. TTYL

Thank you, Mr Willis, I truly am part of the club we never asked to be a part of ūüėā though all of¬†our (everyone in our "club" included) strokes were¬†different, our worlds were completely flipped upside down. Its odd to say, but its nice to say that I'm not "special," we are ALL going through these same trials. Its so nice to meet you, Mr Willis!

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7 hours ago, becky1 said:

Jana, Your fears are shared by many of us about ourselves, and each person has to find his/her way of coping with the "what ifs". I'm no different from you in respect to the reason for your anxiety: I, too, am afraid of having another stroke even though my first and only stroke was 13 yrs. ago. I still take anxiety meds to ward off panic attacks. One of the things that helps me is to look at it this way: Researchers are looking for averages or the most frequent occurrences.They only mention in passing 

those  who don't fall into the averages. To borrow from your example above, the researchers could have said something like: "The  average age of the people that we studied was 66, and they had their first stroke by age 64..." (My example here is purely fictitious but used to make a point. ) The point being that very little is said about the people who were less than 66. Those people were outside their averages, just as you could fall outside average of some people who had more than one stroke.
   I think that I probably did not explain that well. Know this: Each stroke is unique to the person who has it. Yes, each person bears some similarities to other str0ke victims, but is also different in some ways.  BECAUSE OF OUR DIFFERENCES, IT MAY NOT BE USEFUL TO COMPARE YOUR STROKE TO OTHER'S. Find out,instead, the cause of your own stroke, if you can, keep taking your meds. as you are, and look to the future of those 2 beautiful kids who need their Mom. BEST, BECKY

 

hello, Ms Becky, thank you for your perspective and you explained it perfectly. Your words are so helpful and definitely perked me up this morning! My babies need me, my family needs me, and I WILL thrive. I am starting to learn that the mind (i like to call it our "meat computer" ūüėā) is a powerful organ. It may be a little complex to "restart" it, but it can still be done!¬†

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Absolutely Jana, Statistically x% of people will die crossing the road, but we don't stop crossing roads.  Anxiety is hard to shake off.  Some of your anxiety could be due to the rewiring of your meat computer, some people find knowing that helps.  Many find the serenity prayer helpful.  I tend towards mindfulness and the practice of taking the debilitating thought when it occurs, looking at it logically and thoroughly and then putting it on the "top back closet shelf " This gets easier to do with practice and with knowing I'm doing all the things I can to live a full and healthy life, and worrying without action only slows you down.  So choose what you are going to "worry" about take the action needed to reduce the risks where appropriate.  But don't wrap yourself in cotton wool either, you don't know where your limits are unless you push against them occasionally. You have young children, learn from them.

 

You've got this!

keep at it

-Heather

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Jana

No one here will EVER tell you to 'get over it' or to 'buck up'. 

We are here for support and love.

We got you

ūüíöūüĎĎ

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Janaailene, hello and welcome to the forum. I don't post as much these days but reading your post I felt compelled to add my thoughts. Firstly, you certainly sound as the type to not go down without a fight, and yet determined to find some answers and comfort knowing that your not in this alone, and you've come to the right place. All of us share in many ways your fears and hopes of a more positive outcome mentally and emotionally, and possibly assurances. We share our experiences, for example my stroke was cause during surgery to repair a ruptured aneurysm in the left vertebral artery at 54yrs of age. Many of the resulting deficits caused by the stroke improved through rigorous rehab and continued family support. Many of us are still living with minor deficits that vary, we find inventive ways to work around those shortcomings to live more normal functioning lives. 

 

On the other hand, as in your situation the emotional, thats a tuff one to overcome. I'd guess that there's not too many of us who hasn't or still lives with the looming fears of another stroke in the future. In my case as well as many others, so much has already changed the way we live our lives, the relationships that have suffered, the jobs we had to leave behind. It's hardly conceivable of another stroke taking even more out of us. So sometimes the fear overshadows our lives, and the good in it. Those same fears drive me to seek out alternatives, different medications, alternate therapies, or seek help from our higher power. I've come to the point that at 68 now and further health complications with a heart event, my time here also may not be long for this world. So for me, I draw close to my higher power, I surrender my fears, my negative thinking, my health, everything that I haven't any control over, in addition to a lot of prayer. Honestly for me it helps to share the burdens in a positive way.

 

Sure, I'll do all that I'm humanly capable of, seeking out doctors, taking prescribed medications, limited rehab, even a therapist to share my thoughts and concerns. I'll always be hands on and involved with my personal recovery. But what I cannot control I turn those burdens over to God, and the list of burdens are long. I've also turned more of my attentions over to helping others who are having many difficulties, cancer, illnesses, injuries, accidents, emotional trauma. It just helps me in many ways to take my focus off of my difficulties. A diversion if you will. And thats not meant to minimize your own struggles, your family or emotional turmoil, I find it just opens my mind to other kinds possibilities, it's healing and good for the soul. 

 

I totally understand your fears and concerns, I will certainly add a prayer of support, strength, and a healthy long life for you today. It's part of my mission as it has worked out, a calling, and one that I found by listening to my inner voice when I finally surrendered to the fact that I've done what I can humanly do to aid in my rehab, now it's Gods turn.

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1 hour ago, will2 said:

Janaailene, hello and welcome to the forum. I don't post as much these days but reading your post I felt compelled to add my thoughts. Firstly, you certainly sound as the type to not go down without a fight, and yet determined to find some answers and comfort knowing that your not in this alone, and you've come to the right place. All of us share in many ways your fears and hopes of a more positive outcome mentally and emotionally, and possibly assurances. We share our experiences, for example my stroke was cause during surgery to repair a ruptured aneurysm in the left vertebral artery at 54yrs of age. Many of the resulting deficits caused by the stroke improved through rigorous rehab and continued family support. Many of us are still living with minor deficits that vary, we find inventive ways to work around those shortcomings to live more normal functioning lives. 

 

On the other hand, as in your situation the emotional, thats a tuff one to overcome. I'd guess that there's not too many of us who hasn't or still lives with the looming fears of another stroke in the future. In my case as well as many others, so much has already changed the way we live our lives, the relationships that have suffered, the jobs we had to leave behind. It's hardly conceivable of another stroke taking even more out of us. So sometimes the fear overshadows our lives, and the good in it. Those same fears drive me to seek out alternatives, different medications, alternate therapies, or seek help from our higher power. I've come to the point that at 68 now and further health complications with a heart event, my time here also may not be long for this world. So for me, I draw close to my higher power, I surrender my fears, my negative thinking, my health, everything that I haven't any control over, in addition to a lot of prayer. Honestly for me it helps to share the burdens in a positive way.

 

Sure, I'll do all that I'm humanly capable of, seeking out doctors, taking prescribed medications, limited rehab, even a therapist to share my thoughts and concerns. I'll always be hands on and involved with my personal recovery. But what I cannot control I turn those burdens over to God, and the list of burdens are long. I've also turned more of my attentions over to helping others who are having many difficulties, cancer, illnesses, injuries, accidents, emotional trauma. It just helps me in many ways to take my focus off of my difficulties. A diversion if you will. And thats not meant to minimize your own struggles, your family or emotional turmoil, I find it just opens my mind to other kinds possibilities, it's healing and good for the soul. 

 

I totally understand your fears and concerns, I will certainly add a prayer of support, strength, and a healthy long life for you today. It's part of my mission as it has worked out, a calling, and one that I found by listening to my inner voice when I finally surrendered to the fact that I've done what I can humanly do to aid in my rehab, now it's Gods turn.

Damn it my special friend, that was beautiful and so well written. You were in that "good" place when you wrote this, lol. You always capture our situations so well with your words sometimes that your comments lift many of us besides me I'm sure. Thanks buddy! God Bless.

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i often worry when i get a weird headache or odd feeling that it might happen again.But I see my Dr., and get checkups, 

take my meds, and most importantly 

i relax through meditation.
It has made a nice difference for me and got me off depression med. I highly suggest it, as a daily 20 minute or longer routine.I use SacredAcoustics healing music, put on headphones and see ya!

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Welcome to the Stroke Network.

M goodness, you have had a shiitake ( mushroom fyi) time. That fear is real and on top of having two kids.. young yet. My (ex) husband (( side note: no we did not get divorced because the stroke)) never thought I was having a hard time for you couldn't 'see' my stroke. I had a vertibrial artery dissection caused by a chiropractic manipulation and thankfully my deficits are inside. But that still sucks.

No one will ever tell you to "suck it up" but in his defense - He is under stress as well. He has a wife who has had multiple strokes, he has two kids, bills and trying to keep all together. He may not know how to deal with all and watch out he doesn't cause himself to have a stroke or some injury

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As you have been told by others on this forum, we all have panic attacks and there seems to be no way of avoiding them but we all learn our own ways of handling them as I'm sure you will too. I'm in my seventh year of recovery and I believe my stroke was caused by a Doctor taking off blood thinners just before a major operation and not putting me back on them after a reasonable time. Naturally I will never have this confirmed! 

You have quite a few different things happening all at the same time and again this is quite common with stroke survivors. Take it easy and try to get confidence in yourself again by congratulating yourself of your  achievements, and by the way..... welcome to the club!

Deigh

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On 9/22/2020 at 7:24 AM, will2 said:

Janaailene, hello and welcome to the forum. I don't post as much these days but reading your post I felt compelled to add my thoughts. Firstly, you certainly sound as the type to not go down without a fight, and yet determined to find some answers and comfort knowing that your not in this alone, and you've come to the right place. All of us share in many ways your fears and hopes of a more positive outcome mentally and emotionally, and possibly assurances. We share our experiences, for example my stroke was cause during surgery to repair a ruptured aneurysm in the left vertebral artery at 54yrs of age. Many of the resulting deficits caused by the stroke improved through rigorous rehab and continued family support. Many of us are still living with minor deficits that vary, we find inventive ways to work around those shortcomings to live more normal functioning lives. 

 

On the other hand, as in your situation the emotional, thats a tuff one to overcome. I'd guess that there's not too many of us who hasn't or still lives with the looming fears of another stroke in the future. In my case as well as many others, so much has already changed the way we live our lives, the relationships that have suffered, the jobs we had to leave behind. It's hardly conceivable of another stroke taking even more out of us. So sometimes the fear overshadows our lives, and the good in it. Those same fears drive me to seek out alternatives, different medications, alternate therapies, or seek help from our higher power. I've come to the point that at 68 now and further health complications with a heart event, my time here also may not be long for this world. So for me, I draw close to my higher power, I surrender my fears, my negative thinking, my health, everything that I haven't any control over, in addition to a lot of prayer. Honestly for me it helps to share the burdens in a positive way.

 

Sure, I'll do all that I'm humanly capable of, seeking out doctors, taking prescribed medications, limited rehab, even a therapist to share my thoughts and concerns. I'll always be hands on and involved with my personal recovery. But what I cannot control I turn those burdens over to God, and the list of burdens are long. I've also turned more of my attentions over to helping others who are having many difficulties, cancer, illnesses, injuries, accidents, emotional trauma. It just helps me in many ways to take my focus off of my difficulties. A diversion if you will. And thats not meant to minimize your own struggles, your family or emotional turmoil, I find it just opens my mind to other kinds possibilities, it's healing and good for the soul. 

 

I totally understand your fears and concerns, I will certainly add a prayer of support, strength, and a healthy long life for you today. It's part of my mission as it has worked out, a calling, and one that I found by listening to my inner voice when I finally surrendered to the fact that I've done what I can humanly do to aid in my rehab, now it's Gods turn.

Hello wwill! Your final sentence really resonated with me. Thank you for giving my new nightly mantra to me. 

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  • 4 weeks later...

Hi Janaailene

 

I'm not the feel-good type; here is what I've gone through.  Your mileage will almost definitely very, but there is hope.  I've never had a panic attack (as far as I can remember).

 

I had two strokes two days apart as a result of a vertebral artery dissection in 2016.  Nothing after that.  I am allegedly at a higher risk of another stroke "because".  My neurologist can't explain exactly why, it's more of a risk/statistical thing.  Plus the dissection is still there, but the artery is now completely blocked.

 

The first two years saw a bunch of improvements, big ones at first (walking, balance), getting more and more subtle as time goes on.  I'm still partly blind but I am better at compensating.  My left leg still gives me trouble, but only when I am tired or run longish distances (but at least I can run again!).  My short-term and working memory is still a disaster, but I have workarounds (notebooks, computer, and more).  The first few years my family and I were all horribly worried about further strokes (or bleeding to death because of anti-coagulants).  We've worked out a modus vivendi over the years, and it works most of the time.  I am still anxious, frustrated, angry, depressed and despairing from time to time, but it gets easier to deal with.  Wife and kids are used to this, so don't generally freak out.

 

Not every day is good, but there are streaks when I feel almost normal again.

 

I have found it easiest to deal with when we are all brutally honest about about the impact and prognosis.  Our children (now young adults) have adapted easily, and help in multiple ways in a very natural manner.  One of the positive side-effects:  they are compassionate and have a huge amount of empathy when dealing with people.

 

This is early days.  Over time things get easier to deal with and sort-of settle into the background.  Just think of the impact of having a child; life goes from stable to crisis to complicated to a new normal.

 

I hope that this helps.

 

         paul

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