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iola

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iola last won the day on April 22 2019

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  • Biography
    NASAH April 9, 2013
  • Location
    Maryland (USA)
  • SAH/Stroke Date
    Apr 9, 2013

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  1. Hi everyone, Today, I finally reached 10 years. What a journey. In the beginning, there was pain and the fear of not knowing if I would live or what kind of life I would have. The weirdness in my head and if I’d ever feel anything other than pain and dread. My brain was a filing cabinet full of knowledge and order that tipped over and made a mess all over the floor and I was incapable of picking any of my files up. However, something happened along the way and slowly my files started finding their way back. It takes time, hard work, a lot of crying, and it takes hope. The folks on this site helped me tremendously to see there was and is hope. I sit here today 10 years later to tell the “newbies” to have hope. One week leads to one month, which leads to three months, six months, one year, and the next thing you know you are sitting in my spot 10 years later hoping for another 10 years. Xoxo iola
  2. Hi, i had mine almost 9 years ago and I remember it like it was yesterday. I wanted to get back to life and I pushed and I found that with a head injury it’s different than mending a broken arm. Sometimes the more you do the more you head says forget it. I remember being at the beach about 2 mos after mine and walking down the beach overcome with fatigue. I honestly did not know if I was gonna make it back and did not tell anyone just how exhausted I was but the next day I was so tired and my head hurt and was very heavy headed. I had done too much. My dr told me to make no mistake that I’d had a life changing event and would be a changed person because of it and it would take 18 mos to 2 yrs to feel some kinda normal. He was right. I have learned with a head injury you can jump three steps forward and four steps back and it’s infuriating but you learn to press on. Today, I am active and do just about everything I did before except roller coasters. I can’t do that. It’s a long walk back but you will get there but remember your brain is the motor trying to repair itself so it can take care of the body. The brain needs stimulation but it also needs rest. Be be kind to yourself. iola
  3. Hi everyone, It has been quite awhile since i visited and always glad to see familiar faces/names and everyone always helping the other. It will be 9 years for me in Apr and I can hardly believe it. I do have setbacks and I still have the heaviness and headaches but I deal with it. What always knocks me back are the head swooshes i get out of the blue. Just sitting there minding my own business and I get this sensation like I got up and whirled around really fast. It lasts only a second and really does not hurt but it sets me back and ole anxiety creeps in. I get my yearly MRIs so from what the drs can tell my brain is fine but it is so scary and frustrating. Does anyone else ever get them out of the blue? They go away for a long time and then I get one. Hate’m. iola aka... “i”
  4. Hi, I read your initial entry and it was like reading my own. I get really dizzy when I'm tired, have not eaten all day, or stressed. Excercise tends to kick in the endorphins and I feel good when doing physical activity. Only thing is I feel like crud after. I never feel 100% anymore. I accept that but it really stinks. I've learned a lot too but what a way to get an education! I am a bit over four years from mine and I wish a lot of things but lucky I can still do what I do.. Iola
  5. Um, I still have meltdowns and I'm 4.5 years post brain pop. It's so frustrating knowing what you could do and now what your brain says you cannot do, right now. You look in the mirror and maybe you see the same face and body and that's what everyone else sees. So, look a little deeper and then look again. This truly life changing, pretty awful, event did happen to you. Yes, it did and there is nothing you can do about it other than let your brain heal. I have tried everything. Walking, yoga, Botox (although it was nice they also put it where my two wrinkles are between my eyes!), acupuncture, those terrible shots in the back of your head, chiropractor, blah, blah, blah. None of it worked. Thought it did in the beginning but there are just those times when nothing helps and you just deal. Unsatisfactory, but there it is at least for me. I just keep pushing forward. There is no miracle cure I am aware. Don't worry about your meltdowns, it's okay to meltdown some times. ? iola
  6. Hi, When I was down I tried so hard to get back to my place. I went back to work too soon, I started walking too soon, and I had incredible fatigue, dizzy spells , and headaches. Take your time. You are not a sloth, your brain is hurt and it does not heal like a broken arm. People cannot see inside your brain so do not pay attention to those that think they know more than you because they don't. Only you feel what you feel. iola
  7. Hi, I'm in Maryland but was I Philadelphia on travel for work when it happened. Talk about never expecting your life to change in a single second! Oh, yes, it did. The surgeons are great at doing what they do but counseling is not one of them. I did go back six months later to see mine to ask very pointed questions and he said to give yourself 18 months to two years to just feel decent again. People heal at different paces so it could be sooner for you. I am not the same, although, I get up every morning and go to work and push myself but the brain is a funny thing and it tells me when it's had enough. I had a terrible dizzy spell at work a few weeks ago and I had not eaten all day and was under a great deal of pressure. Brain was tired and just gave me a warning to stop and eat and get up and dis-engage for a little while. As as for information about a NASAH, I read everything I could find online until some things became repetitive. Dr. told me to get off the internet but I didn't and continued until one day I just became tired of reading. You will get there. Iola
  8. Hi, I'm in the states, as well, and had the same as you. Had the third angiogram a couple months after my brain pop. I do remember, after my second angiogram, my headache was horrible and so much so they took me back down for another CT scan. Pumped me with all kind if meds that did not work. The only thing that did was liquid Tylenol they put directly in my IV. It was awesome!, I had terrible anxiety after coming home along with terrible headaches and all sorts of wierdness in my brain. I am four plus years after mine and it is slowly getting better but headaches, not as severe, are there and randome dizzy spells occur that scare the heck out of me. Lack of sleep and if a skip a meal will make my dizziness and temperament pretty awful. You will be fine just give time a chance to heal you. iola
  9. Hi, First and foremost its your brain and your head that hurt and people that have never gone through this have no clue what pain is. I like to compare it to a bat being slammed against your head. Makes me so frustrated when I read stories like yours and Drs. do nothing about it. Thank goodness they did the CT scan to properly diagnose you. Step off soapbox. Are you on any meds right now? I was on all sorts of crazy meds and seizure meds (preventative measure). I had wild out if this world dreams and I still swear to this day an angel spoke to me. Was as real as someone sitting right beside me but could not see anyone. Did not recognize the voice but whomever it was said it would be a long hard haul but I would be okay. Nothing elaborate or music filled. Pretty simple. . Sometimes simple is best. Weirdness comes and goes and your brain is trying to fix itself right now and may be tapping into subconscious thoughts. Find and rely on a good neurologist to help you. They can be tough to find that specialize in your unique bleed. Most will be surprised you are alive and sitting across from them telling your story. Iola
  10. Hi, I had had mine almost four years ago and I know where you are right now. Mine was non aneursymal, which I've learned simply means there were no aneurysms found on the major arteries. Still a bleed from some where, which the doctors believe was venus/weakened vessel. Still hurt like hell, and, to this day I still get what I call the, "here and there days" when out if the blue my head feels pressurized and heavy or i get this smack of dizzy that scares the socks off of me. I returned to work four months after mine and I can tell you that was too soon. I still work but it's not the same, I am not the same, you are not the same. Give yourself a minute to heal. With your responsibilities you need to heal if you want to take care of others. It's so darn hard. I'm in the states too. Where were you? I was in Jefferson in PA and I had a wonderful dr and team. There were two nurses I do not miss but the majority were wonderful. I am sorry your experience was bad. People sometimes lose their humanity. However, many of us were let loose to live a "normal" life. Whatever that means.. iola
  11. Hi, Like the rest of us here we all understand where you are. Mine was 3-1/2 yrs ago and I still have odd sensations from time to time and at two years you are just making your way to the next step. Not all steps are forward though. Those steps back make you angry and frustrated and maybe cry and that's okay. But, you get up and push forward again and on many occasions you do it alone. Funny thing is most people have no clue of your health or mental state because you look normal to them. And, many times your victories are also in silence but they are yours and will strengthen your desire to push through your hardships. I've tried, since my bleed happened on Apr 2013, to work my way back to who I used to be and as I work I realize I remember that person but want something different now. We are ever evolving. I hope you did have a wonderful holiday and do look forward to more, they are there for you, iola
  12. Hi,. I had three angiograms and two CTs after my NASAH. I also have one MRI per year and I'm 3-1/2 years out. There is always risk with scans but I'm willing to take it for peace of mind. I remember at six months thinking I thought I'd be better by now. At six months I went back to my surgeon and asked a lot of questions and the best response was it would take a year or more to feel better and not the better prior to the bleed but the better now. What I'm trying to say is you cannot compare yourself to before, it's impossible. It will take more time than you think or they tell you. It's a very slow healing process.
  13. I am so sorry you and your husband are going through this. Mine was non aneurysmal. I am 3-1/2 years out and I still have headaches and heavy head. I do what I want and there are times I pay the price for it. I was so incredibly scared when I got home from the hospital. The neurosurgeon saved my life and did his job and told me I would be fine but my neuro was very honest and said it may take 18 months to 2 years to feel better. Not better like before but better now. You are never the same. The anxiety will subside in time. It was terrible with me too. My heart raced because of the medicine I was on at the time and I would get these feelings of pure doom. It's so hard to accept what has happened and to know you really have no control of what happened. I am in the U.S. and have the ability to go to a neurologist any time I like and still have an MRI yearly. It settles me for awhile. My neurologist is not my surgeon but he is good and tries to understand. Really, they never do and kinda look at you in awe. Give it time because it does get better. iola
  14. Wow, was your bleed non aneursymal? Both times? You should be in the many studies I've read. Anxiety is an awful thing and I suffered from it my first year. It would come out of nowhere and I'd get a rushed heart and sweaty hands and feel like I was on the outside of myself looking in. I do hope the Drs. have you monitored more closely now. It's a terrible thing to be frightened. iola
  15. Hi Everyone. I am over three years and have some of the same symptoms. Never feel quite right, always the heavy head, and God forbid it rains . I hate the rain, it hurts my head. I work every day but am so tired when I get home but do not rest. I lose words all the time. When I do sleep it is not soundly. I am up several times per night. It is what it is and I push forward and hopeful the next year will be better. i
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