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Xmartz

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Everything posted by Xmartz

  1. Thank you so much for your positive words of support. It feels great to be able to talk to others to totally understand what you're going through
  2. Hi Friends, Just need a bit of some uplifting words I think. I had been doing so well and for some reason this week hit like a wall and I can't seem to get through it without crying. I think I grieve sometimes just over when I have lost, half of my brain, any kind of job, which is pretty much any kind of social activity most of the time, my driving. I know I'm not supposed to describe myself this way but I just feel like such an idiot half of the time or more. It sucks when it takes three hours to make dinner because I miss placed something every five minutes and it takes me 15 more minutes to find it. This was not me before, I was so much different. I was so more put together. Don't get me wrong, I am very grateful to be A miracle after a 6 cm bleedand to be here right now, and people love to remind you ,"well, you are still here!" But they don't understand that being here still is such a struggle from day to day. I apologize for being negative, I am not usually a Why me sort of person, but for some reason I seem to be stuck in a rut in the past week or so and I just can't seem to get passed it. Maybe it is the fact that I am alone with my thoughts and feelings too much? I used to have days like these, but not weeks. I am just having such a hard time holding it together. I feel like I could cry continuously for some reason. It's like I am so emotionally hurt that my heart actually aches physically. Does anyone else have weeks like this?
  3. Vermont girl, I struggled for six months after my bleed with severe headaches only to find out that the narcotics I was taking were giving me what they call"rebound headaches". The drug helps at first but then I would get a worse headache Later in the day. I cut back on the narcotics and my doc gave me a combo of Benadryl and a nausea med,(either compazine or phenergran). Basically makes me very tired and I sleep off the bad headache. This worked out much better for me. Good luck finding your solution! prayers! Mandie
  4. If you don't mind, could you share with us what your Neuro docs say about this? Thank you!
  5. You may want to sit down and look at your finances/budget and see if there may be a way for you to cut back to working part time. I don't know if you're from the U S but I was put on social security disability to help supplement our income. l can't for the life of me understand why your Neuro docs would think you could go back to your normal routine so fast! As said above, CHECKING OUT IS NOT AN OPTION! We have all been given a second chance and there is a reason for us to be here or the Lord wouldn't have helped us thus far. Your family and friends need you! You can always find someone to talk to. I don't know if we can send private messages on this forum but I'd be glad to be here for you any time you need an ear! Hang in there and don't give up on those patient advocates. Let your family help. They need to know that you are still in the early stages of recovery as well and that you need help. Hugs?And prayers ? Mandie
  6. My situation was weird. Only symptom was vomiting about every half for four days straight. I was actually in the ER two days prior for it but there were so many others there for the same reason that they assumed I had the same bug that was going around. Two days later my husband came home from work to find me on the floor. I was barely conscious and very altered/confused making no sense.
  7. Vermont girl, Hi! I hope you are not going back to work too soon after such an injury. I am more than two years out and have been placed on permanent disability. I'm lucky to have a husband to support my family; even if we are barely squeaking by. Be kind to yourself! Expect that you will have days like this. It is out of your control! As for the anti-inflammatory drug, I was told by my docs to NEVER take them again. However, I am on blood thinners so that may make a huge difference. feel better and don't beat yourself up about the moods. Find things that are therapeutic for you. For me it's painting and listening to music. I also love nature. Feel better and God bless! Mandie
  8. Hi! I was wondering if anyone else had any extreme itching of their craniotomy site scars? Its over two years since my craniotomy and just less than two years since my cranioplasty and the itching almost seems to be getting worse. Some days it seems like the entire bone flap itches! I scratch sometimes until I almost scratch it open! Is this normal? I have a question in to my surgeon but may be awhile before I hear back. Thanks! Mandie
  9. I've been posting in the SAH forum n ot realizing that there was a forum for those who have had non aneurysm SAH. I suppose you are all as puzzled as I am about where your SAH came from. Has anyone else ever heard of PRES? Posterier reversible encephalopathy syndrome;Neuro team was wondering if that was what may have caused my SAH. PRES Is a rare syndrome that not much is known about right now.
  10. Don't know if you have to wear a helmet. I did after my craniotomy, but that's gone when you're put back together. I didn't have a plate, they froze my skull for four months then put it back together with metal plates. Going back in the hospital is always scary, but they know what they are doing. Take care!?
  11. By the way, I'm not ALWAYS this positive. There will be ups and downs for sure. Just expect that! God bless!
  12. Fortunately I had a right side bleed and did not have a whole lot of mobility issues. I just forget things and lose things all day. I also lose my words a lot or have trouble finding words then I want to use. My personality has changed a bit, I tell it more like it is rather than letting people walk over me. My Family had to get used to that. But I am extremely blessed to be able to walk and talk very well since the incident. My faith is something else that has help me through. Without my faith I'm not sure where I would be
  13. Just a positive post on a good day. Two years ago I had a massive SAH. I included a pic. The doctors call me a miracle. I was flown to a closer facility where they did six hours of surgery which included removing damaged brain tissue and half of my skull because of the swelling. Afterwards, I remained on life-support for a week . Because of lying so still I developed blood clots in my legs. after a few weeks in acute care I was transferred to a rehab hospital. After three weeks in the rehab hospital, the day before I was to leave for home I developed a massive pulmonary embolism him. I was back in ICU again. After another few weeks in the hospital, 53 straight days in all, I returned home to my children, then ages 12 and 14. Six months later I had a subdural bleed due to blood thinners and was back in the hospital. After which, I developed little seizures. I went through 18 months of physical, occupational and speech therapy. Then I went through six months of Vision Therapy. Although I can no longer work as an EMT, I have fallen back on my Art degree and I am doing drawings and paintings again, which is very therapeutic. I am still working on getting back to driving, but I feel very real ready and know that it will come someday. just thought I would post something positive for a change. An image of my brain scan! There is always hope, keep the faith ! Mandie
  14. Never hurts to get checked out. Everyone's symptoms are different. My only symptom was vomiting for three days straight prior. Of course which caused which I don't know. The vomiting could've caused the bleed or vice versa keep us updated
  15. Most people with a gcs of three would be unconscious. I was in a coma following my SAH and had a GCS OF 5
  16. As an EMT, I can tell you that 15 is perfect so you are doing pretty well! God Bless!
  17. Clare, i had the same issue and I have very high cholesterol. My neurologist thought statins could have contributed to my SAH. They thought I may have had something rare called PRES,( posterior reversible encephalopathy syndrome), and that statins were not a good mix with it. After over two years they finally feel it's safe enough for me to take. Sure hope so! Haven't started yet! i wish you luck in balancing it all out, Mandie
  18. I get a lot of leg cramps and my doc told me to try a magnesium supplement which helped me a great deal, doesn't mean it will help you as well. As for tremors, sometimes medications can cause these. My seizure meds do this to me sometimes. I would check with your GP. God Bless, Mandie
  19. Jan, i feel almost exactly the same sometimes. It's been over two years for me and I had a very large right frontal lobe bleed, which affects personality. my husband and I fight a lot too...just feel like the passion is gone. NO ONE, except a few here who have actually been through it, can EVER understand how you feel so don't expect that they will. I will say a pray for you. Hang in there Jan! Mandie
  20. I have not been allowed to drive for two years now. I was told I could drive after six months past my cranioplasty. Then I was told on that very day that I now had a subdural bleed due to blood thinners. After that bleed, I started having little seizures so I was told another six months of no driving. Then after 18 months of physical, occupational and speech therapy I was told I needed vision therapy to drive. Now that I'm done with four or five months of Vision Therapy I am told that my reflexes are not fast enough for me to drive yet.i feel like a shutin! Going crazy! All the while finding rides to all these therapies! Anyone else have these issues? Sorry, my second vent for the day.
  21. Thank you so much for your reply and support. Unfortunately I was an EMT in the past which I loved but takes a huge amount of multitasking skills and now I have a hard time cooking and talking at the same time. I do, though, have an art degree to fall back on and I am trying to do some paintings. No guaranteed income with that, only disability. if only it would help my brain more!
  22. It's been over two years and I've accepted that I will no longer be the person I used to be, but I am reminded of my faults everyday as I walk around looking for misplaced items, throw away things gone bad left outofthe fridge and just don't have the energy I used to. Does it ever get better than this? Mandie massive (6 cm) right frontal spontaneous subarachnoid bleed April 2015
  23. Carolyn, What is government disability? I have social security disabity, same thing? My husband received abig pay cut so we are now literally drowning in debt. I am so overwhelmed!
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