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kpaggett

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Everything posted by kpaggett

  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. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. I wanted to say that not everyone can get to this stage for a variety of reasons. I'm glad you are on your way! I've come to the point where if I had a do over, I'd gladly have the SAH again because it has taught me so much about life, suffering, gratitude, death, striving, failure, success, just living. I embrace my new found emotional compass even though I look silly sometimes crying over stuff. I love how my body moves coming from complete paralysis into being able to do stuff most people my age can't. I see how my past studies in music therapy and neuroscience both prepared me for the moment where I could implement that knowledge on myself. It has been quite a miracle as far as I am concerned that I was so prepared for it down to studying the exact brain area where I had my SAH in graduate school! Crazy. Keep on looking for more gratitude to come! ~Kris
  14. I can only comment about the mystery autoimmune disorder. I too had strange wide spread pains and sensations as well as fatigue. I wondered if it was the SAH or something else. I've discovered for me that it was the SAH because I am not taking anything and it is improving as are my other symptoms of SAH. I never had this before and it started right after so that's why I thought they might be linked. It is easy for a doctor to prescribe pills, but it is hard to tell if you really need them. For me, I experiment until I find the right answer and if the pills may be causing an extra stress on you by making you gain weight, it might be worth exploring with your doctor. Good luck! ~Kris
  15. I sensed that my fear response was way out of whack towards many things. My feelings had changed after NASAH. I sought professional help when I started to feel panicky and that just wasn't who I was at all. It was one of the best decisions I made and it really helped. You shouldn't be able to handle this alone, it isn't a character flaw, and for me, I really didn't want to put my husband through my worries every day. By having an impartial person who is giving you new information on how to deal with fears, it improves a whole lot of other things as well. As you can see, many of us have had this exact experience. I went so far as to get my medical records and look at my scans over and over in case the doctors had missed something even though I had never been trained in reading films! I googled everything, I read research papers to make sure they were giving me more than just the standard of care. I didn't trust the professionals knew what they were doing in my particular case. All of this worry. I dealt with it when I got the tools from someone who works on this professionally. If I were to just keep to my own devices, I'd get the same result every day because I didn't know what else I could have been doing differently. Once you learn, then you can work it out when it comes up. You don't have to do it all by yourself. Take it easy, ~Kris
  16. Moving your legs on a run does take brain power even if it puts your mind into a flow state. Also, doing something new puts stress on the brain...this can be good stress, but it is stress. Whenever I do something new, I back off on my regular routine or just rest up and then I'm ready again. It's like a recharge or refueling that we need sometimes that the general population can get away with not doing. It is, however bad for them as well and often shows up in other ways. Really, when people say listen to your body, it isn't saying listen to what you are telling yourself...your mind isn't always your best guide after NASAH. This takes experience too. A year isn't enough. At some point, you will know what will throw you off and what you can handle and be able to take steps most of the time. Even now 41/2 years post, there are somethings that just throw me that I don't expect to do so. However, they are rare. Look at this incident as a learning experiment. You can expect some of this when you begin a new job as well. Watch for signs, ~Kris
  17. I too had a warm tingly sensation with the dye in my angiogram. It scared me, but then it went away. Have you noticed any functional differences in your abilities to think and move since then? That would be what I'd go with. If not then the discomfort probably will subside. We are hypersensitive to head sensations after the SAH, at least I am. Any headache, pressure, change, the shower, a neck move, etc. I seem to notice it and it freaks me out a bit. I'm glad you're asking questions of your doctor. If you are being monitored, then if there is an issue, you will be treated quickly with the most information they have gathered. Hope for the best while you keep the pressure on the professionals. Take care, ~Kris
  18. I also went to a neuropsychologist. They specialize in neurological conditions that induce psychological symptoms. It was the best thing I did, but the hardest to decide to go. I too had financial issues because on top of my medical bills, my husband lost his job that year. In a normal situation, I could have found a job and covered the bills, but with SAH...no way! I also felt dumb all the time. I felt like I was only thinking dumb thoughts like 'breakfast' when I had to sit down crying for 10min to decide whether I wanted coffee or not that morning. It was slow going, and I didn't take any medications for it since I wanted my brain to heal back to the way it was. It was so sad what I had lost...my wonderful smarts and body functioning. It is the worst loss and so personal. I looked at it like a grieving period. It lasted about as long as a grieving period too. Now, I am usually free of it, but just like grief, it comes on every so often with a trigger. I can morn for a bit and then put it away. I sense that this will be with me for the rest of my life just like any other grief. Be sure you are just as compassionate to yourself as you would be towards anyone who has suffered a great loss. I am sorry for your loss. I really do know how it feels. I've been there/am there. At BTG, we all know this feeling. ~Kris
  19. Each year we keep on keeping on. I actually had a normal feeling about my birthday this year. The last 4 years, I have felt like I had a new birthdate, the day of my hemorrhage. This year, I forgot the anniversary of my SAH until someone reminded me. I didn't however, remember how old I was turning on my birthday....48 or 49. I think I can't get my mind to understand that I really missed a few years of me during my recovery. I forever hope that I will live and feel like I am back to 44 when the bleed happened. So far, not quite there yet, but almost! I see how each year, I can look back and find something that has improved! That is cool. I'm going with that. ~Kris
  20. You need to consult someone that specializes in addiction. You don't want to go down the road of enabling when you have other family responsibilities. It is a terrible condition that often occurs in conjunction with other issues; in his case SAH. He should be treated for all his issues what ever they are. Take them all seriously. Take yourself seriously. You are right to be concerned. Find a resource or another way to take action. You've been so good at acting so far when you thought you were helping him recover from SAH. He still deserves your help in whatever form that takes to keep you and your family safe from mental/physical/emotional/spiritual harm. It is all equally important. I'm glad you posted this here as many others may also become addicted to alcohol, prescribed meds, or other substances after SAH to not deal with it all. ~Kris
  21. Hi all, So I found in my own recovery that it is not a steady upward slope. It has progression and retreat. My brain decides on its own with no input from me what gets the improvement and it isn't always in the areas where I want to see improvement. Stress is a big issue and it isn't what I think stress looks like, it is what my brain decides is stressful. This always throws me off and sets me back when I don't identify what is happening and try to resit. Resting isn't always the answer, but it really was at first...for the first couple of years, I'd say. Now, it is often different, but none-the-less, it is what my body/brain need instead of what I want to do or not do. When one of us talks about listening to your body, it takes on a whole new meaning after something like SAH occurs and sometimes we have been cultured to NOT listen to ourselves and put others first instead and that is the virtue. In our case learning a new virtue of self-care is really important and actually, the people around us are dealing with stuff too and could use a lesson in this as well...so we are actually lucky that we get this lesson. Take care, ~Kris
  22. I realized that if I just say, "I don't remember you telling me that. What is it again?" works a lot better for all of us instead of, "You never told me that." I know you might FEEL in the moment like they never told you something, but this might not be the truth. It was hard for me to make that shift since I had always been the one in our family that remembered EVERYTHING. Now, I don't...but it is still hard to convince myself of that sometimes and yet, when I'm not in the moment, I do realize that my memory is not what it used to be. Hope this helps. ~Kris
  23. Most people have infundibula. They just don't have their brain scanned to find out. It is just a different shaped vessel. It is neither good nor bad. It is anatomy. ~Kris
  24. Mistina, I have PTSD as well. I have gotten so that I can manage it and no one knows that I have it unless I tell them, but the lack of sleep, the hyper-vigilance in all things, the preparatory anxiety of doing new things, the thoughts of the event. I can say that the thoughts are not 24/7 anymore and my startle response, while still super strong, initiates after fewer and fewer things. I haven't been able to orgasm since and it's been over 4 years. For me, the event didn't happen in conjunction to any association with sex, but you really have to let go of all control over yourself to orgasm and I just can't do that, apparently. I really do think it is part of the PTSD instead of the hemorrhage. It is all psychological, but still so real. I have come to enjoy other parts of intimacy as much...but it is different. I too am a musician and had tinnitus that came and went later. I was actually getting it right before the hemorrhage often and then it totally disappeared right afterwards. Then a different tinnitus started up and it kept changing and then it all went away. I also had a period of perfect pitch which was so annoying! The piano sounded like Honky-tonk and the guitar sounded so out of tune. Strings were OK to listen to I think because string players tune each note as they play. The more I talk to people, the more I find out that many of us have symptoms that come and go depending on what other things are happening around us or within us. A cold, a new schedule, pregnancy, husband leaving on a trip for work, etc. Sometimes, you get symptoms without any identifiable explanation, but at some point, you recognize what you have to do to combat them in the moment when they arise and other ones, you just have to ride out and accept they are there that day. That feeling of fearing another bleed. We have ALL had that. Time really helps. As you see yourself day after day not having this happen again, you'll feel more and more confident. Also, it helped me to read statistics at first...and they're just like your doctor said for NASAH survivors. The last thing is crying about things. I still do that, although it isn't nearly as much anymore (I used to cry 6/day for about 48min each time...my husband started timing them to reassure me that it wasn't psychological, but rather physiological and not under my control). I do think it is normal to feel sad when something like this happens as well. I also found that I am super sensitive to poignant stuff...kind of like that 'Warriors heart' thing. I don't know if it is from the hemorrhage or from the PTSD, but it is hard to deal with as it has nothing, in my case, to do with depression. I hope this will lesson over time. I mostly have issues in private now and only for about 5min each time. Keep hopeful, ~Kris
  25. There is a phenomenon called pseudo bulbar affect (BPA) that happens sometimes when SAH has occurred. It leads to crying and sometimes laughing easily at things. I definitely have this. It has gotten much better, but it is still a part of my life years afterward. Usually, it clears up, I was told. It was really hard to deal with at first as I just cried over everything...it was sad...it was touching...it was so beautiful...it was so unexpected...it was scary...etc. This makes it hard to get through the day sometimes and it is exhausting. There are some drugs on the market, but I opted to just live through it and experience it fully. I am happy to say that I've learned the signs and am able to be compassionate with myself for not being able to control it when it happens occasionally now. Hope you find a moments peace. ~Kris
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