LollieSC
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LollieSC, January 6,  2019  12:37pm EST

Ischemic stroke 11/24/18

I’m 59 and recently suffered a stroke that has affected my right side. Initially my right leg had numbness and tingling as well as arm, fingers and face.  The inside of my mouth as well - so weird, its like someone drew a line down the inside of my mouth, there’s numbness on the roof and the tip of my tongue. (I’m biting the inside of my lip constantly)  I don’t have any significant facial drooping but have some numbness on my upper lip and cheek. That was a month ago and although my leg is no longer numb (but feels heavy) everything is still pretty much the same.  I don’t look as though I’ve had a stroke at all- but dealing with the symptoms is challenging, fustrating and upsetting. My fine motor skills are just not there and the extreme fatigue is just overwhelming. This has altered everything in my life - the fatigue is just so awful. Since I don’t look like I’ve had a stroke people just don’t seem to understand. Previous to this I was highly active and healthy, doing everything for everyone, working and doing a ton of volunteer work (which I just live for)  All of this has come to an abrupt halt - like running a hundred miles an hour and hitting a brick wall.  The doctors are still trying to figure out why this happened because I don’t have high blood pressure, cholesterol, AFib or plaque in my arteries.  When I was released from the hospital I was told that I would receive an appointment for a follow up with the Neurologist- two weeks later I get a call to let me know my appointment is for May 29th -six months out from my event.  Is this normal?  I followed up with my G.P. since but I have so many questions.  They released me from the hospital with little to no info as to recovery and what I can expect. All I was given was a small pamphlet and told that the Neurological group would call me for my appointment. My mind is foggy at times and I’m dizzy sometimes - my G.P. checked my vitamin levels and found I have a D diffency so he just started  mega dosing me on that to see if it will help with the fatigue.  Is this extreme fatigue normal after a stroke? I’m so tired - some days it feels like an effort to just lift my arms. Is it normal after a stroke to be dizzy?  What about the foggiess?  It’s been six weeks since the stroke- am I where I should be in recovering?  My husband has been and is so supportive - we are used to doing everything together (41 years) but I feel like I’m holding him back from things we had planned. Meanwhile everyone’s life continues but mine...

  • JOAQUIN
    JOAQUIN, January 6,  2019  7:10pm EST

    " When I was released from the hospital I was told that I would receive an appointment for a follow up with the Neurologist- two weeks later I get a call to let me know my appointment is for May 29th -six months out from my event.  Is this normal?"

    Hi Lollie!

    Same thing happened to my wife. We were going to have to wait for two months to see a neurologist. Call your primary care physician immediately! She/he can intervene, just as in my wife's case. SIX MONTHS is waaaay to long to wait for your appt. Your GP can help.

    Second, think about getting a copy of a book about strokes. We visited my wife's neurologist just last week. I brought a copy of the book I was reading. She saw it and told me, "...that is one of the best books about strokes out there today." The name of the book is: MY STROKE OF INSIGHT, BY JILL BOLTE TAYLOR.

    Both my wife and I were extensive volunteers, but now we too have had to take care for ourselves first.

    According to my wife's neurologist, yes! Fatigue is very common, and we were assured that it is ONLY a temporary condition. It may take some weeks to overcome, but the fatigue you are experiencing is TEMPORARY. In whatever way you can, you have got to force yourself to move around. DON'T sit and watch TV all day! Walk to the mailbox and back, if that's all you do currently. We were told to get the heart rate up; walking is the best exercise for right now. Check your local library to see if there is a "chair yoga" class that you can take weekly. You can derive a great deal of benefit from just a little exercise each day.

    See if there is a "support group" in your area. Either one you can visit or one you can call on the phone. Agaim, as your GP for help here.

    If you are dizzy, it may be the medications you may have been given either in the hospital or BY the hospital when you were released. TALK TO YOUR GP! We have learned that we, the patient, have got to be out own health advocate. No one else is going to stick up for us...but us.

    Lottie, your life IS continuing, just in a much different way than you had expected. One thing to remember: you are alive, alert awake and enthusiastic about getting better, arent you?? You've got to learn all you can about the experience of having a stroke. No one is going to do it for you, because no one else can.

    Tomorrow, my wife and I are going to our local library to do "chair yoga". It's the only things she can do right now.

    Lottie, my suggestion? Get the above book and read it, or have your husban read it to you. Our neurologist said that one of the best expercises to help your brain is to READ OUT LOUD.

    Keep plugging, Lottie. When life is getting you down a bit, slow down when you must...BUT DON'T YOU QUIT.

    Post on this site again, if you have any questions. I'll respond as I am able.

    Joaquin

  • Mchynoweth
    Mchynoweth, January 6,  2019  9:19pm EST

    I had a stroke 8 months ago, I don’t have any physical signs of the stroke. I do experience quite a bit of dizziness too, and I get headaches.  I’ve found drinking a lot of water and limiting screen time helps me a lot.

    Fatigue has still been an issue for me too, but slowly getting back to work and staying active for even a small amount of time helped me get more active, now I only take a 30 min nap and a few breaks throughout the day when at first I was barely active for an hour a day. I used a Fitbit to slowly up the amount of steps I was doing.

    I did chair yoga and it was great! I am 31 and was going into the senior yoga and senior exercise classes and they were very welcoming! Taking classes and having a schedule was also very helpful for me. I volunteered for a few hours once a week about 4 months after my stroke, it really helped me build up my stamina and prepared me to go back to work.

  • JOAQUIN
    JOAQUIN, January 6,  2019  11:10pm EST

    Mchynoweth,

    Your slow and constant recovery is wonderful news! I assume that by "screen time" you mean sitting at your computer? My wife is 66 years of age; at times her memory cannot find the word[s] for what she wants to say. For the most part, you'd never know that she experienced a "pontein stroke".

    Many thanks for the "FITBIT" idea! My wife has one bu it finds itself in her nightstand drawer mostly. I will give you a report tomorrow, after we do our bit w/the chair yoga.

    Thank you for your post today!!

    Joaquin

  • AHAASAKatie
    AHAASAKatie, January 7,  2019  9:45am EST

    Good morning, we are so glad that you are here with us. We have a lot of information about life post stroke and fatigue after a stroke that can help answer questions for you as well. Please let me know if I can be of other assistance. Best Katie 

  • Mchynoweth
    Mchynoweth, January 7,  2019  1:34pm EST

    I had a pontine stroke as well. Yeah I found limiting computer, phone and TV has helped me. If I ever have a day where I lay around watching tv my dizziness and headaches are much worse in the evening and next day. I try to read or knit instead and f turning on the TV.

    I felt like the Fitbit helped motivate me, I started with a goal of 1000 steps then upped my goal every 2 or 3 weeks I’m at 5000 steps now. I think it’s important to go at your own pace and listening to your body, some days I don’t make my goal and that’s ok!

  • Michael1219
    Michael1219, January 14,  2019  8:29pm EST

    I had my stroke in October. Same exact symptoms. I'm just getting back to normal. My leg is heavy and my hand is numb but I'm hoping to get back most of my mobility over the next year. It's emotionally difficult and taxing for the first three months. I'm overweight, I have sleep apnea, and extremely high BP. I've lost 55 pounds and have my BP to normal levels. However, my sleep apnea is still out of control. I'm scared that it will trigger another stroke. Sleep apnea, high BP, and a poor diet, can all contribute to a stroke. Just focus on all of the modifiable risks and take your blood thinning medication. Taking Aspirin and your prescribed Statin can help prevent another stroke. I'm sill struggling emotionally and find myself extremely frightened. I know that I'm lucky because my stroke was considered mild and I had no mental/ communication deficit. But they're times when I really need support. My family is just coming around to how difficult recovery can be. I'm moving from a walker to a cain but the fear of another stroke is sometimes overwhelming. I'm only 51 and still need to work. In addition, my finances are getting quite low. I've lost weight and regained my faculties by going to rehab and exercising in my pool. Having access to a pool has been a blessing and has helped accelerate my transition from a walker to a cain. You'll be fine. Just remember, you are your best resource and advocate. Dont settle for a six month wait to see a neurologist. I'm pressing everyone to move quickly. My life is too important. My wait for a neurologist was still 6 weeks. I know you have a boatload of questions that need to be answered. Good luck and stay in touch.

  • Chuck1957
    Chuck1957, January 17,  2019  1:06am EST

    i had a right sided thalamic stroke on 3-31-2018 and have issues with left sided facial numbness,central pain syndrome in the left leg and have constant hot and cold flashes. No motor deficits. I’ve learned more about my stroke from my chiropractor than my neurologist who told me to “ enjoy the numbness” which I understand in lieu of being paralyzed, just maybe not a very tactical way of saying it and that in 2 1/2 weeks it would fall be over. I understand that there is no way of knowing when and where the symptoms stop. Has anybody have any practical advice on what to do next? Do I need to be on an antidepressant? I tried neurontin but didn’t like the side effects. Help please. Thank you

  • AHAASAKatie
    AHAASAKatie, January 17,  2019  8:36am EST

    Good morning Chuck1957, I have resources about Central Pain Syndrome that I can share with you.  I also have read that some are able to manage it with medications, generally anti-convulsants and anti-depressants. But finding the right medication regimen takes time and is definitely a conversation for you and your medical team. 

    Please know that we are here for you and if I can help in any other way, please let me know. Best Katie 

  • TEAMGUZMAN
    TEAMGUZMAN, January 17,  2019  9:42am EST

    Hi Lollie! Thank you so much for reaching out to us. My name is Toni, I am a Community Leader here on the Suppor Network, and also a cryptogenic (no known origin) Stroke Survivor.

    I can relate to many of your concerns. I lost feeling in my right hand. I have numbness and tingling constantly. I drop things. I too am limited with the use of my hand. I type at work with a full working left hand, and my thumb and pointer finger on the right. I have some numbness in my face also. My tongue occasionaly gets tingly.

    You are not alone my friend. I don't look like I had a stroke either..so people don't "get it". I am totally fatigued most of the time just as you are. I can sleep all day..but I push myself.

    Always remember, you are still you! I was like you also. I did everything for everyone. I was the great multitasker, and now I live with post it notes and storing information in my phone. My short term memory is ""poo-poo". I did go to cogntive therapy, and physical for my hand. No change for me..I have had to learn how to adap to my deficits.

    I am concerned for you that they would make you wait 6 months to see a neurologist. I am two years post stroke, and I still go see him every six months, at the begining it was every three mothns, and that also included seeing my GP, and my cardiologist. Please try to get in soon, or find another Neurologist. 

    Please keep in mind, and as Stroke Survivors we tend to forget that a strok is a brain injury. It is going to take time for our brains to heal. Rest, and sleep when you are tired. Resting equals healing. If you don't mind me asking, what testing did they give you at the hospital?

    I had: Cat Scan, MRI of brain and MRI if arties in my brain. Endoscopy (thats how they check to see if bloood clots are hiding behind the heart), I also had a heart ultrasound.

    Nothing showed up..only the scarring on my MRI of my brain. Today, at the request of my neurologist, I am going to see a pulmonary doctor to possibly get tested for sleep apnea.

    Sleep apnea can also be the cause of a stroke, or recurrent stroke. They do no want to leave one stone unturned.

    As far as your dizziness and foggies, totally normal. I still feel that way after two years.

    My suggestion would be to find another Neruologist and get in quicker, or make another appointment with your GP and express your concerens. Do not leave with out answers. You have a right to know everything about your stroke. Please keep in touch andl et me know how you are doing!

    Everything you are feeling is totally normal, take it day by day, and dn't be so hard on yourself. We are survivors. 

    Blessings, Toni

  • Spooky75
    Spooky75, January 17,  2019  10:21am EST

    Hi Lollie,

    It sounds like your recovery is going quite well, all things considered - especially since it's only been six weeks! I, too, had some lip numbness, which has since gone away. I'm coming up on seven months since my stroke, and I still battle fatigue and balance issues. Otherwise, outwardly, I don't look like I've had a stroke. I walk slower than I used to, particularly when walking up stairs - and I often tell people that I'm going to be slow going up the stairs because I had a stroke. I'm very open about it. I'm not using it as an excuse, but rather as a means to get people to understand what I'm facing. Each day offers a challenge in some way. 

    When I was released from the hospital almost seven months ago, I really wasn't given any info either, other than words from a neurologist who said he wasn't too certain about my future since I'd had my stroke at age 42. Wow, such a vote of confidence. When I saw another neurologist a few weeks later, she was so encouraging ... and that appointment really gave me hope for the future. In your case, I think you should call that neurologist office and fight to get in sooner. It'll be a life-changer. 

    And, although it sounds unintentionally trite - hang in there. It'll all get better. When I think back to how I was feeling six months ago, I feel so different now. I've been told that I need to give it a solid year or two before I feel even more normal. But I know I'm on the right track, and I know you are as well. :-)

    Korrina

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