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Hello everybody.  My name is Heather.  I apologize if this gets lengthy but here is my stroke story:

 

 On July 22, 2003, my daughter was born.  3 weeks later (on a Friday) I went in for a balloon angioplasty on my heart for aortic stenosis (which I'd had since childhood).  The angioplasty was unsuccessful and I was admitted to the hospital for evaluation - it was decided that I was to have open heart surgery the following Monday.  During that weekend in the hospital, I got up to go to the bathroom and completely spaced out. (my hubby tried handing me toilet paper and I just sat there staring at him blankly)  My husband knew something was wrong and ran and got a nurse.  I had what the hospital says was a mini Stroke/TIA.  (However, since then many Dr's have confirmed it was an actual stroke and not a TIA) The cause was determined to be debris from the balloon angioplasty.   I had open-heart surgery on that Monday to replace my aortic valve.  I was 26 years old at this time.   After the TIA/stroke  I had 1 month of speech therapy and 3 months of occupational therapy.  For the most part I had completely recovered - except emotionally.  I was constantly afraid and suffered panic attacks regularly for several years. 

 

 Fast forward to 2006.  I have suffered from migraines since middle school.  One day I had what I thought was a migraine. (with aura).  The next day I realized something was not right and called the eye Dr.  They told me to come right in as they feared I was having retinal detachment.  It was not retina detachment but in fact a stroke in my right eye. (branch retinal artery obstruction)  I do have a permanent loss of my upper peripheral vision in my right eye ( I describe it as a grayed out area that I can see if I close my left eye or I am in low light).  But for the most part, I  recovered from that as well.  Throughout the days/months that followed I had a several MRI's, CT's, echocardiograms, and a transesophageal echo to check my carotid artery - all of which checked out ok.  No cause was ever found for the stroke in my eye.  I was on a birth control pill at the time and was told to stop that just in case.   I also started on plavix - was on plavix for awhile but then went to an aspirin regime.   During these years my blood pressure increased as well as my cholesterol.  I was always able to get it back under control with weight loss.  It was an up/down routine for several years.  My Dr. started me on a lisinopril, and after losing 30 pounds dropped it down to just 2.5 mg. 

 

 Fast forward yet again to this past summer - July 15, 2017. (40 years old at this time)  My husband, daughter, and I were attending a Christian music festival when I had my 3rd stroke.  Which is some ways was my first "real traditional" stroke.  I was standing there holding my phone in my left hand and taking pictures.  I was using my thumb on my right hand to touch the screen and focus.  I started to notice my thumb not working and just sliding down my phone screen - yet I thought nothing of it.  A few minutes later I was trying to put the cap back on my water bottle and couldn't and dropped it.  I asked my hubby to get it for me and when he handed it to me I just dropped it again.  About the same time I told him that I thought there was gum on the ground (that got stuck on my right foot) cause I could not lift it up.  He looked at me and asked me if I was ok.  I told him, "yes, I'm fine.  H sensed something was off and pulled me over to some bleachers to sit down.  There he asked me to smile for him.  He then dragged me over to some of the festival staff and said we need medical attention as he thought I was having a stroke.  The whole time I kept telling everyone I  was just fine.  Which is humorous to me as I have spent the last several years living in fear of another stroke.   I was taken to the concert medical tent where they started going through all the stroke assessment protocol.   Within 20 minutes of the onset of symptoms I was on an ambulance and headed to the ER.  MRI showed I had an ischemic stroke in the left middle cerebral artery.  Within a few hours I had regained use of my right side with only some minor strength issues and was sent home the next day.  Just like before no underlying cause has been found for this stroke.  I am now on Lisinporil (2.5), Plavix, Rosuvastatin,  and Verapmil.  Was on Amitriptyline before the stroke for migraine prevention and continue to take that as well.  As mentioned before I have regained completed control of my right side and you would never even know from looking at me that I had a stroke.  I do suffer from numbness/coldness on my right side that comes and goes; which has been going on since the very first stroke but has been worse lately.  (Dr's have never given me an explanation for the numbness - but do not seem concerned)  However, it concerns me which is what lead me to this board.

 

I am thankful to find a place where I can talk to others who know how I feel.  I felt as if I had gotten over the constant fear of having a stroke again, but since the most recent one all my fears/worries are back.  I often turn to Google, which I'm sure you all know is a BAD IDEA!!  But I am thankful it lead me to this board. If you made it this far, thank you!!  I look forward to getting to know you all.  

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Welcome!  You've come to the right place for info, help, ask questions, or just vent!

This site has been a god-send for me, hope it is for you, too.

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7 hours ago, hokarma said:

I am thankful to find a place where I can talk to others who know how I feel.  I felt as if I had gotten over the constant fear of having a stroke again, but since the most recent one all my fears/worries are back.  I often turn to Google, which I'm sure you all know is a BAD IDEA!!  But I am thankful it lead me to this board.

You did an excellent job of telling your story.  My stroke started in the morning with a TIA but I had a massive brain stem stroke later that evening.  We have had over 14,000 stroke survivors and stroke caregivers register with us over the past 20+ years.   Every person has a similar but unique story so we can empathize with you. 

 

Use the dropdown menus at the top of the board to navigate our website. 

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Wow your story was a roller coaster of emotions. First, Major Props to Hubby for asking you to smile and acting quickly. Huge kudos. I can understand the emotions of 'everything is fine' for I was detached from the fact It was me.

 

You are so correct to never self diagnosis yourself with google or WebMD for we all will want to live in bubble. :) 

 

 

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Heather, Welcome! As a stroke survivor/anxiety sufferer, I've found this to be a comfortable place

 I haven't been able to do much research either, because of my anxiety. But, I can usually handle info as it's given out here because it's handed out in smaller amounts that I can digest. Consequently, I've learned a lot about strokes here without feeling nauseous. On my better days, and when I was able to control my anxiety better because of medication, I have been able to research further on topics which interested me.
The numbness that you're feeling is due to neurological damage caused by your stroke. It may improve-but like everything stroke you"ll have to "wait and see". It is a common stroke effect, which has no treatment, which  is why your docs may not be overly concerned with the numbness. 

There are some things that you can do for your anxiety; exercise, meditation,or medication, to name just a few. I went the med route because I wanted a quick end to the panic attacks, and constant fear of having another panic attack.Ask your doc.

Good luck with everything. Becky

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Hi Heather ( another Heather here),

 

I can't help much with the anxiety side of it, thankfully I've not had that sort of issue, but it's not uncommon. Is the numbness a lack of sensation or reduced sensation, or heaviness, or something else? In the first 6 months after my stroke I had no sensation in my left arm (I could not tell if anything touched my arm or hand and I did not know where it was without looking at it.) The OT got me to do nerve stimulation exercises to encourage the brain to reconnect to it. It has greatly improved since then I now have basic position feedback (although I don't completely trust it) and I know when I'm being touched even if I can't always tell you exactly where I'm being touched or what with.  I still only have very minimal conscience movement in that arm/shoulder and no practical function.

 

The nerve stimulation stuff is easy if you want to try it. It involved having a sink/bucket of cold water next to one of warm-hot water. I had to put the good arm in the cold water and measure how long I could stand it while also concentrating on what it felt like, and then put the bad arm in the cold water for the same length of time remembering what it should feel like, then repeat with the warm-hot water immediately after, repeat that cycle 3 times, then the same mental process while drying the arm with a rough towel. repeat the whole thing at least twice a day. Over a week or so the brain learned those sensations and their contrasts and after about a month I was able to pass the hot cold touch test with the OT.

 

The explanation I was given for the blue/cold I get (mostly in my foot but occasionally in my hand) is due to damage to the auto immune functions which are thought now to be a function of the white matter in the brain (for many years the white matter was thought to be passive filler, but new research is suggesting that is does actually do stuff, and stroke damages both grey and white matter) your autoimmune system looks after things like lymphatic drainage and temperature regulation. The subconscious systems that keep the body operating, not just fighting off disease.

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HI Heather :

 

welcome to best online stroke support  community. I stroked at age 34 which left me paralyzed on my left side & retired me from the job I loved. I thought I would never find joy in living again, but thanks to my family, friends & this site I persisted & did not give up & found my joy again. Today after 13 plus years on this post stroke journey I view my stroke as just speed bump in our life's journey, it slowed me down enjoy scenery along the way. I found blogging & chatting with other survivors very therapeutic for my soul. We do have scheduled afternoon & evening chats where we all meet. you an check out chat schedules on our board. Hope to bump into there soon.

 

Asha (now 46 year old survivor)

 

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Hello, I am so grateful for your share as you and I among others have similar worries about another TIA or another stroke. So far I have been reading the blogs and share and it gives me great comfort to learn we are not alone in this. I have come across a quote Do you want to plant seeds or grow weeds? A change of thought in how I think has been quite helpful to me in this. I had a stroke and a TIA the following week. I am really scared and concerned about another. The minute that enters my mind I change it with another thought. I hope you find this to be helpful in someway. I am 1336 mile from home and I am waiting for the go ahead to be able to drive myself. My stroke was on the right and with consistant exercise and rehab for agility and strength I am getting there physically - Emotionally I am a wreck inside. I am Blessed in that I am alive.

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Welcome and feel free to vent, help, hold (figuratively) with the other here.  You can get your husband to sign up too and he can ask about questions he may have as a caregiver.

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