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Everything posted by Colleen

  1. Good morning, My SAH was caused by a ruptured aneurysm, so a bit different, but overall the brain does not like being bathed in blood. It takes a very good while to recover from that and you are experiencing the typical aftermath. Fatigue can go on for quite awhile and the one good day followed by a crash is not unusual. Regarding caffeine, I do recall my neuro telling me if I was used to having it the withdrawal could aggravate the headaches, so limited amounts could actually help. That said, I mainly kept to decaf and herbal teas. You should consult your physician to be sure. Regarding exercise, I was instructed to limit weight bearing, pushing, and pulling, but walking was ok. I personally would not have wanted anything that caused pounding or jarring for quite a long time. Each case is individually its own, so you really need to feel what you are up to and heed your physician's cautions. Best wishes on the journey, Colleen
  2. Hello Claudette, My heart goes out to you as you navigate this new set of challenges. I had my rupture 13 years ago and aneurysms (2) ultimately were clipped, so they're supposed to be fixed forever and I'm not even monitored any more. Does that mean I never have a moment of worry or anxiety about it? NOPE. So first you know that you are completely normal and entitled to all the feelings you are having now. All at BTG feel that, respect that, and support you, especially in light of all the other occurrences and obstacles you have to face. Honestly, I believe that Kathy has expressed that support so eloquently that I don't know what to add. All I can say is whenever I find myself spiraling downward I think of all the reasons to keep pushing on, especially those who really need me. And I lean on my faith, which really developed well after the SAH. I won't lie, it's a struggle sometimes, but it definitely helps to have a trusted family member or friend to reach out to and to seek professional care if it all becomes too much to do alone. You've already miraculously survived TWO ruptured aneurysms, so you obviously are a strong lady. YOU CAN DO THIS and we will be here to buoy you up! Love, Colleen (Texas, USA)
  3. Good morning, First, let me say I am not an expert in the area of disability. Whenever I had my SAH, I was working for a government agency and had sufficient sick leave and vacation time accumulated to cover the time I was off work. Do you have disability insurance through your work or privately? If not, I believe the only other option is Social Security disability, which I understand is a long and complicated process. Various people I know have resorted to using agents to submit claims and advocate for them as approval can be difficult to attain. I do hope you are feeling better at this time and that your scan showed healing. Being a vet tech is surely physically demanding at times, with lots of stooping and bending and lifting (I have several pets and am in my vet's office often). As stated, fully healing from an SAH is a long process. Questions are best addressed by your neurologist. Best wishes, Colleen
  4. Same here. Like Tina I have random pains from the craniotomy. These are first places to hurt when I'm getting a headache or when it's cold outside. I have also had numbness in my face, which a neurologist suggested could be aggravated by too much caffeine. And as Jess suggested, other medical issues (for example, spinal) can confuse the cause. If it is extremely bothersome, best to consult a neurologist. Best wishes for feeling better, Colleen
  5. Hi Jean, I can totally relate and commiserate to your problem here. I have chronic back pain from serious degenerative arthritis. My lower back is so messed up that my balance has gone off and I often walk crooked. Recently I visited a Pain Management dr in my neuro group and went through steroid injections in 4 levels my lower back. That worked great for a couple months, but pain is coming back. I also had a compressed nerve in my neck that was making my hands numb. It took 6 months to get surgery to relieve the compression and now my spine is fused from C2 to T4. Following that 10 hour surgery, in the hospital they were giving me a strong anti inflammatory and Tylenol! Are you kidding me? I had to beg for better pain relief meds, Apparently the US assumes we all will turn into opioid zombies. Anyway, prior to all this ibuprofen was - and still is - my go to for back pain. Tylenol just doesn't cut the inflammation. I have tried prescription strength anti inflammatory (prescribed by a neuro doc) but it bothers my stomach. I have asked about the aneurysms and bleed risk, but my annis are clipped so there is more concern for bleeding ulcers than SAH. Bottom line is that all of us have our own issues and you should consult all your docs before self-medicating. Maybe see a pain management specialist, it can't hurt any more than you already are! Best of luck! (and BTW, my left hand is still numb, dang it. I'm learning to type with one hand) Colleen
  6. Welcome to the site. I'm also in the States and cannot imagine what you had to endure due to the COVID. During my time (12 yrs ago), my husband was constantly present except in ambulance and life flight. Doctors kept him constantly apprised of what was happening. These days I pray to not hurt myself or have any other reason to go to Emergency, the stories are so scary. I hate being a bearer of negative news, but recovering from SAH is not like getting over a cold or even a migraine. It takes time for the brain to settle down, heal, and feel better. As you've no doubt discovered, pushing too hard delays the process. i tried doing too much and ended up breaking a bone in my foot from tripping due to fatigue. So take good care and take it slow. Your long term health is more important to your loved ones than you think. Best wishes, Colleen
  7. Hi Debbie, Welcome to this terrific site. You will find much of value here to support you as you recover. One thing to remember is that the brain does not care to be bathed in blood; it is irritating to tissues and it really has no where to go. The way it also seem to stress more easily. However< WE ALL ARE Different and your was explained to me is that it creates sort of a bruise. Anyway, the headaches do go on for awhile. I had a ruptured aneurysm and even after 12 years, stress will cause me a headache. I also seem to stress more easily and no doubt we all have a bit of PTSD, although it fades with time. However, we all are different and your symptoms are likely tied to your unique level of damage. As Tina said, address your concerns with your neuro team and don't be afraid to seek second opinion if it continues to be troublesome. Sometimes neuro specialists see the blood dissipated and no further issue, so tell you to go live your life, but there are many levels of specialists. Best wishes with your recovery and be kind to yourself, Colleen
  8. Hello Phi;, I can't type much now due to some neurological issues (unrelated to SAH) but if you chase down these links I think you'll feel better: https://med.virginia.edu/radiology/2017/05/26/living-well-after-surviving-a-subarachnoid-hemorrhage/ https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0181006 YOU'LL FIND YOU ARE NOT ALONE FOR SURE!
  9. Hi Sallios, Your post caught my eye because we are also caring for an elderly parent (97) who displays mild dementia. She has been with us going on 3 years and with COVID we gave up hired aides and took on full time caregiving. Challenging under the best circumstances. Because I am science oriented, I couldn't help but search for peer-reviewed research on the dementia question. Like most things these days, studies have been done. One conducted using data on Danish stroke patients suggests slightly increased risk, but risk seems to decrease as years post-SAH increase. I would suggest doing our best to take care of ourselves as we would to avoid heart disease, high blood pressure, etc etc and enjoy the days given us as best we can.
  10. I am going on 12 years out from the SAH and still have some nights where I am so fidgety I can barely tolerate myself. I really can’t say it is or isn’t related to the SAH, or some other neurological issue ( I have some pretty serious spinal arthritis). I agree with Tina that often it is related to being overtired. I use an herbal tea with Passion flower that helps. Colleen
  11. Congrats Andrea (late as usual). No pics of me in the hospital bed thank goodness, but there is a rather gruesome one taken post craniotomy. I'd much rather see your pics of the lovely scenery around your home. Rock on! Colleen
  12. Hello Vicky, So good that you found this site. Explore all the topics and you will see how many of us share similar issues and how, by sharing, we've helped each other. By all means don't wait to get counselling because PTSD and anxiety are common. Explain to loved ones that reliving the event causes massive anxiety and discomfort. Eat healthy. Drink lots of water. Be kind to yourself. Come here often to learn, to vent, to laugh, to cry. We're all in this together. Colleen
  13. Hi Iola, it is so nice to hear from you again, though I certainly wish for you to feel better. I do understand the quandary overly work. I am 11+ years on from my SAH and have been one of the incredibly blessed given the nature of the ruptured aneurysm. I was able to return to full time work, even changed jobs eventually and took more challenges. For the past year I've "planned" to retire about every other day. We took on my husbands elderly mother a couple years ago, have a menagerie of pets, and two houses to take care of. Sometimes it's just all too much. Maybe be your neuro psych closed for the pandemic. I know my primary care dr was still not seeing patients last week, though he was doing phone consults. ( yeah, that was weird). Hopefully your Doc will be back on line soon. Keep in touch, Colleen
  14. Dearest Sarah, i had not been on in a bit and this is the first thread I came upon. I am so shocked and saddened for the loss to BTG but know it is nothing compared to what you and your family is enduring. Win has been such a bright light to us all, always ready with encouragement and so good at teaching us to laugh at and accept ourselves. She will be so sorely missed. Prayers of comfort for you and your family, including Tilly. It was so clear how very much she loved you all. Colleen
  15. Dearest Gem, it it is with such a heavy heart that I've read of your losses - first the tripping from SAH and then the final blow from this dread virus. Your poor dad an innocent victim unable to shield himself. There are just not enough words in my vocabulary to tell you how sorry I am. I so so hope you find solace in the poem Daff has shared and in good memories. I pray you will find comfort and that we all will move past these terrible times we are in. again my condolences to you and your family. With love, Colleen
  16. Thank you Daffodil. That was lovely, honest inspiration..and congrats on the eight years!, Colleen
  17. Hi Sarah, I can't imagine what you've been going through. I do not think I could be that patient waiting either. I truly hope you get the answers you need when you go in Monday and fully agree with Macca; do not let them have an inch! You are owed a full explanation of what is going on and all the options in full detail. I will keep you in prayers (belated Happy Birthday also, sorry to miss your day) Colleen
  18. I'm also in the USA. Following my SAH due to a ruptured aneurysm in 2008, I had a cerebral angiogram prior to release from the hospital. This procedure was repeated at years 1 and 2. After that, I had annual CTA scans for the next three years. I continued consultations with a neurologist until a few years ago, but had no more imaging. Colleen
  19. Dear Sunflower, Welcome to this wonderful forum. As has been said, you will find a wealth of information here. You do not mention whether your SAH was due to ruptured aneurysm or other cause. Regardless, two months out is very early in the healing process. It takes time for the blood to break down within the confines of the brain and that could be a source of discomfort. It's also not unusual to be scared and worried over ever small sensation. Best to check with your neurologist regarding all the possible short and long term impacts from the SAH and chances of a repeat. In any case, you should be taking care not to stress or strain yourself to give your brain time to heal. Is help with the babies possible? If so, ask; people don't realize the impacts of SAH because you can't see them. As for being alone with the babies, is it because you're afraid you'll collapse or something? Perhaps a medical alert device would lend more confidence until you feel stronger. I know I felt scared sometimes being alone after my ruptured aneurysm, but I didnt have children to care for. I hope your family is there to lean on and that information you can glean from this site helps. Prayers for your recovery, Colleen
  20. Hi Lori, i went through a ruptured aneurysm 11 years ago. For me, it came on after a morning shower; no exertion and no history of high blood pressure, though I had been under stress at the time. MasterCard, I also had serious anxiety. I found herbal teas helpful, just the process of making them and sipping them. Some have calming herbs as well - chamomile comes to mind. I also had a sweet dog that would lay against me and keep me company when my husband was at work. I remember being pretty limited at the time regarding exercise and reading gave me wicked headaches, so it was tea, tv, and the pets. It just takes time to heal. If the anxiety is extreme, speak with your Drs. PTSD is not uncommon in SAH survivors. Best wishes, Colleen
  21. Congratulations on the five years of progress as every year gives us a bit more comfort and advancement. Super congrats on the retirement and volunteering! Colleen
  22. Congratulations on this milestone Anni-versary Louise. And I also thank you for your thoughts today and for all you have shared over the years. I can appreciate your gratefulness for Ronnie as I too have a supportive husband who has helped me get through when I needed encouragement. May you and Ronnie be blessed with many more years! Love, Colleen
  23. Hi Carolyn, Congratulations on the progress you have made, never underestimate the significance of smallest achievements. In addition to Subs explanation I would suggest that following SAH our brains may have trouble adjusting to too much stimulation. I recall after my time in the hospital experiencing similar anxiety on the ride home. In my case it was cars and buildings streaming by as we were in a city. It's almost like a bit of phobia after being kept in semi- confinement. To this day (11 yrs now) I will become anxious in the grocery store when I am very tired because of the visual overload - too many colors, shapes, labels and the other shoppers. then there is the fact that may of us has a degree of PTSD following the trauma, and rightly so. You may feel safer at home. Or , the SAH may have damaged a potion of the brain that controls fear.. You are still early on in recovery and will find things get better as you go. But, If these symptoms continue to bother you, speak with your neurologist. I waited way too long and could have alleviated much of my anxiety sooner. Best wishes, Colleen
  24. Good morning all, hard to believe, but it's been 11 years to the day of my ruptured aneurysm. BTG has been such a blessing during this time. So, I get to go out and celebrate by having a troublesome tooth pulled. I debated the appointment date but there were no other options for the tooth and I need to feel better! Have a good day all! Love, Colleen
  25. Congrats on the fourth year and here's to many more years going forward! Colleen
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