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kpaggett last won the day on February 1 2016

kpaggett had the most liked content!

Community Reputation

215 Excellent

About kpaggett

  • Rank
    Established Member


  • Biography
    I am a warm eared, cool headed, and fast legged person.
  • Location
    MI, USA
  • Interests
    music, outdoors, solitare, puzzles
  • Occupation
    Music Therapist/Neuroscientist/Home maker
  • SAH/Stroke Date

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  1. I felt sick for moths. It was so hard to eat. I always described myself as 'turning', but I later found out I had all the types of dizziness put together: Vertego where the room is spinning 2. Dizziness where you feel you're turning 3. Light headedness when you get up too fast 4. Disequilibrium where I felt like my head was like a balloon attached to my body with just the string and my feet felt like I was walking on pillows. Now put it all together and try and walk up right....it just made me sick. I only have fleeting feelings of one of these every so often now after 5 years, so it really did improve over time for me. I hope it will for your dad as well. ~Kris
  2. Am I the only one who voted 1 out of ten????? It's been over 5 years, though for me. I am in really good shape physically. Emotionally I feel I have become adept in dealing with the new volatile emotional me. I'm confident in my ability to deal with the tears and anxiety now. This doesn't mean I LIKE them, but I deal with them effectively. I don't need a specialized doctor, just my regular GP once/year for a check-up. ~Kris
  3. I am over 5 years into recovery and have fewer times when I feel anxious, but when it comes on...it can still get bad. And then I go back to my happy self as if nothing happened. So it is evident that it isn't about how I really feel overall. I just try and remember that this too shall pass even if I'm really caught up in it at the moment. It always does. I've noticed for me, It is often associated with something new and once I actually do the thing, I am never anxious about it again. Also, I usually meditate daily and I do notice more incidents when I don't do it.
  4. Well, I think this is a misconception we all made when SAH entered into our lives...that, 'Surely, it should be over by now!' I've only met one person that felt like they were recovering fast and it was no big deal. THAT is unusual, not that you still feel awful. If you're measuring time in weeks, then there is almost no way that anyone would feel good at this point. We've all been there on BTG. We all thought we'd be OK when we got home. Some of us felt like we should be OK after we didn't have to go back to the neurologist/rehab doc/neurosurgeon anymore. Then it was after people who didn't live with us told us we looked and acted normal. There are stages to getting better and they do come, thank goodness! You will notice you feel generally better and better over the next weeks, months, and even years like for me. I kept a log of how I felt and what I was having difficulties with and that helped to put things in perspective as I'd occasionally look over the entries for the last week, month, or year whichever the time period was. I still do this on a broader scale and with the longer time frames to mark how I'm feeling a given time each year. Take heart, we are all with you as you work to figure out what this SAH means in your life. I really do hope you start to feel more stable if not better soon. Remember soon is just a relative term...don't pressure yourself into defining what that is too...soon Take Care, ~Kris
  5. When I was one year post SAH, I was still consumed with striving to get better. At some point that lifted and I actually started living my life again instead of trying to either bend my new brain to my old life, or bending the present to my brain injury. I was beginning to recognize that things were going to be different and starting the thought process of being really good with that. At first, there is no way I felt in anyway good about my situation...people would tell me things like, 'you are so lucky to be alive' or 'you've really had a good recovery', but those statements and others like them just left me feeling like I was projecting something other than the way things actually were. Slowly, I did begin to be able to hear those things and know that they were true. It was only after several years, though. Working all day, thinking fast, being physically agile, etc. are not all there to being a good person. I actually love going slow, now; I like taking it leisurely; and I laugh when I try and look graceful. There certainly is pain sometimes, both mentally and physically, but it isn't caused by going hard or long anymore. The things that are often ingrained in our society, that I used to take for granted, suddenly open up for actual examination after SAH. My gosh, I really don't have to do all this stuff anymore because it isn't at all important or what life is about! How many people get to make these realizations? In this way, we are lucky...not in the way other's think we are lucky. They'll never know. I hope you find that restful place in your recovery as well...sooner than I was able to even. I hope everyone here does. I really value the support and I don't think I could have progressed psychologically as well as I have without all the BTGers! Good luck! ~Kris
  6. The fatigue for me was unlike any other fatigue or sleepiness I had ever experienced. It lifted in stages over the years. Now I only have it when I do something out of the ordinary, either physically or mentally challenging. It is really hard to navigate it at first because you don't really know what will cause your fatigue. It could be anything and what you think it is going to be turns out not to be. Becoming aware of your personal energy patterns is the first step, so you are on the right track. Figuring how to accommodate them is the second. This one can be inconvenient and frustrating. You can't just plough through it like you would have done before and expect to get better. Sometimes all you need is 5 minutes in a dark room to refresh a bit, but sometimes it takes more than that. Figuring out what works is hard and how to implement it into the day is challenging. Good luck, ~Kris
  7. I started seeing a neuropsychologist after a few months because of the new anxiety I felt. I too noticed racing thoughts and so I started to meditate with a teacher. Both things really helped me as well as yoga. I had never done this before either and it was a really calming way to move the body without all the 'no pain, no gain' mentality. Even now 5yrs after, I still have the heightened sense of fear and anxiety, but now I've learned new skills to deal with it when it gets intense. I am able to be quiet with my thoughts and they can be either slowed or watched and not experienced so directly. My attention is way better. Take care, ~Kris
  8. From what I understood, if on your brain scans they found un-ruptured aneurysms, then you'd have to be monitored. Next, if you had other things that may have contributed to the bleed like smoking, hi blood pressure, alcohol consumption, that these could increase your risk, but if they couldn't even find what caused it (as in my case), and I had a healthy lifestyle and no family history. Then the likelihood of it happening again was as Macca said, was more likely in a different random person than me. You see, we had our brains scanned. Most average people don't so they could be walking around with a vessel waiting to burst. The doctors would have seen this on our scans if this were the case and warned us. For example, my mother in law heard a funny sound in her ear and finally an intern ordered a MRI and they found a giant un-burst aneurysm. She had it clipped and never had a bleed, but she has to be monitored for others. Most people just find out when they have a bleed that they have extra un-burst aneurysms. The doctors can see them on an MRI or an angiogram. However, this feeling you have, we have ALL had it. Time really is your friend, in this case. Just keep on coming on the site for reassurance. We've all felt that painful unknowingness. This is what is so hard for humans to live with...we want to be sure of all things, to know. When we realize we can't know everything, it throws us off because we thought we really did, at least in our own bodies. Now that seems like it was taken from us and leaves us feeling like a tetherball without the rope or pole. Then one day the rope appears, I have the pole for some things and not for others. It is a process of finding center again and it takes lots of time. Take care, ~Kris
  9. I had the neuropsych. testing done too early. If you need it to evaluate returning to work, that is one thing, but if it is just for your curiosity, I suggest you wait until 18-24 monthss. post SAH. Otherwise it can be really upsetting. We already know that we have deficits. You can feel them right now. The IQ score was crazy for me early on...it was like I was boarder line developmentally disabled. Now I am not, but at the time, it seemed devastating to get that kind of news. The other reason to go to a neuropsychologist is for brain therapy. That is so worth your time at any point. I really benefited from that right away. Have a good recovery. ~Kris
  10. Hi there, I am almost 5 years post 'Blip'. My memory was really bad for a bit and then it improved with work. It was strange to me since my bleed had been in a brain location not associated with memory. Yet, there it was. Now it is generally good with unpredictable moments of horridness. I wish I could tell when it was going to fail, but I can't so I try and just take steps to have a back up like notes or husband, etc. I used to have an above average memory, so there you go. Don't get me started with spelling! I was always a bad speller, but now I'm like back in grade school with my spelling. I have no idea why I reverted to my initial ways, but it really is like I'm a kid again trying to figure out which words break the rules, etc. I also leave out letters of one word only to put them into the next, so I have a lot of editing to do now. Things started to get better when I recognized them, did something proactive, and then let it go. Your body/mind can only do what it can. You can train it all you want, but in the end, it decides what it wants to do and you can't really control that one. Hope you find some ways to work on those acrobatics. ~Kris
  11. My HR was odd after my SAH for a bit. Then it evened out. Then I started having premature ventricle beets. It was never anything to be alarmed about. Keep a watchful eye on that dizziness though, no one wants to have a concussion on top of SAH already! You do know that the brainstem is where your brain regulates the heart, so that may be why it seems different after a SAH in that location. If you are walking around and running, I'm with you...watch and wait for a bit. ~Kris
  12. My aunt had knee replacement and it did take her longer. Also, for me, anything is way heightened so my pain is bigger, my allergies are longer, I am more sensitive to everything. I also just get depleted way sooner than everyone else. I wonder if this has anything to do with your recovery? Do you get worn out faster on a day to day basis now? ~Kris
  13. Sometimes professionals just can't find the exact casual location of a bleed when it is diffuse or large. Blood often causes the ventricles to enlarge, the CSF contains blood, and the blood may or may not be confined to a given space like the Subarachnoid. That's why there is all these specialized terms that doctors use to describe the best they can where it all happened. Because we want to know, the professionals try and find out what happened for us patients. In some cases, mine included, there isn't the specificity to figure it out precisely. In any case, the recovery is similar. Good luck recovering from the bleed. ~Kris
  14. I had two and I was awake for both. I only had a local at the groin site. The bleeding was crazy for the second one because I was on blood thinners. If you are not on these, as I was not on them for the first one, the bleeding at the insertion site stops fairly fast. You have a right to be concerned about the procedure, it is brain surgery after all and there are always risks. However, you do need clearance to get your spine surgery because they don't want you to have an aneurysm burst on the table during that procedure. It can also give you peace of mind that your brain looks good so you don't have to worry about that at this point. Let us know how it goes! ~Kris
  15. Julian, I had what the doctors called a diffuse SAH confined mostly to the perimesensephalic region. They all told me I'd me I'd be fine. It took me 3 years, but now feel fine most of the time. However, there are still occasions when it is obvious that I am not my normal self even though anyone would consider me 'normal'. For example, I used to play my husband at chess and other games of strategy and win every single time. Now, he mostly wins and I only do occasionally. Does this impact my life? No, but it is a reminder that my brain isn't as analytical as it once was. I get distracted easily, yet I am aware of it and it humors me as I don't have any control over it. I am more impulsive and am truly grateful that my husband keeps the books now. I can do the math, but the stress... Things stress me out easier and I am more sensitive to stuff and feel emotions deeply where as before they were controlled and intellectualized. What I have found here is that everyone is working on recovering in a different way. I don't need extra water AT ALL, for example, yet many do. Each of us learns to listen to the signs our body/brain but not mind tell us and this takes time and fine tuning. At some point, you get into a rhythm you never knew existed within yourself and it is a REALLY good place. If I had a do over, I'd take the SAH again, it has sought me so much about myself, suffering in general, and giving support to others in need. Good luck on your recovery road! ~Kris
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