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MaryB last won the day on August 26 2014

MaryB had the most liked content!


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About MaryB

  • Birthday 16/02/1959

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  • Location
    USA, Indiana
  • Occupation
    Vet Assistant
  • SAH/Stroke Date

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  1. Mrs M, I too had a Perimesencephalic SAH almost 6 years ago. I think overdoing it is a big issue. Had it not been for BTG I would not of know that you must be kind to yourself in recovery, not push getting well - as in not past your daily limits, drink lots of water and stay hydrated. I cannot recall what else I learned at the moment but I would say you your body may be telling you that you have over done it. I think you certainly should always follow up with doctor too. I know if I over do it my head kills me. I need to stop before I get to that point. Sometimes if I am doing computer work, working with people or business stuff I need to concentrate on I may only last 1 to 3 or 4 at the most. We all are different. But I do believe you should listen to your body, take it slower and tell your doctor. Pain pills also give rebound headaches........how unfair is that?? I really do best with resting. Good Luck, MaryB
  2. Hi, I have not been on here for a very long time. The scalp pain and tingling went away after awhile- I am almost 6 years post SAH and an unexpected vertebral artery dissection during a routine angiogram. I have had severe eye pain- most of my pain is right sided but my eye became so annoying and painful I felt I could gouge it out. Later I found out I had a form of trigeminal neuralgia. This was post SAH maybe 1 2/2 years? My surgeon was the one who DX me and I was given a drug Lyrica and within a week was feeling much better. NOT telling you that this is your issue at all. I am bothered by the cold, cool breeze, air conditioners / a fan blowing on my face etc, being tired, sunlight, ( I have some damage to my vision). I am still bothered but my pain is like a 2-3 not a 8-9 when I was hoping I had a tumor pressing on that nerve and they could just take the tumor out. If it is winter my pain will be worse. I agree with all Macca wrote above. I did see a 'neuro-opthalmologist' who told me I had lost vision in both eyes but it is not that bad. But it ruled out something that could of been missed. Good Luck. I hope it is just a healing process for you. MaryB
  3. Sorry Kel, This is not what you wanted to hear at all. I know it is so unfair on so many levels when they do straight shoot with you. I just do not understand. My surgeon who I love told me on my 3 or 4 month check up that I had a small brain tumor. No one mentioned it prior to that. It really makes me mad that they cannot give you all the facts. I now have all my scans printed and in a file. I had to switch family doctors recently and it is a nightmare of explaining what you have and how you became the way you are bla bla bla. Anyway GOOD LUCK!! Big hugs to you, maryb
  4. Casey R, I was switched from Ritalin to Adderall months back. I cannot function without it. I can take 2 to 4 a day. Most days 2 of the 5mgs at around 9:30 if I can remember another 5mg at 1:00. It keeps me awake and focused. I swear when I do not take it I literally can walk in circles in my house. I LOVE it, I wish I could focus without it but think I am not able to anymore. I can at least keep some normalcy to my life with it like balancing check book. It took awhile to adjust to dose. I had LOTS of company this week and took 2 and 2 later at 2:00 one day that we were out and I was able to be like a normal person that day. My day is over about 3:00 now. I make dinner and 3:00 and I am done. But I use my hands in evening most of the times knitting or something now. I have, was diagnosed with cluster headaches but really have trigeminal neuralgia type 2 so I have to be careful of stimulants. I only have coffee in am and no tea or sodas all day. Good luck Mary
  5. I find those drugs are not just for depression they also help pain and other issues. AND I agree with Iola. But I think one of the first doctors we should be set up is a neuropsychologist even if I had to pay it out of my pocket it would of been money best spent. I cannot express that enough. I wish they did an evaluation on all us ASAP, it only makes sense to have someone that understands us mentally & what our personality type is to help us in recovery. I also think we would stop thinking neurologist were suppose to be doing the therapist job! Boy once I got that neurologist aren't there to hold our hands and care about our daily coping life got much easier for me! The therapist is a God send as far as I am concerned and I did not think I was depressed but she DX me with it due to "medical condition". Good luck, mary
  6. Welcome Leanne, You already have some great advice offered here but I want to add for me I could easily of cut off the world and lived in my little place too. I had BTG but really had to push hard to not let the darkness and my need to be alone take over. I often do not like talking to people. I do not know why. I also do not cry and I think it has been maybe 5 or more years since I had more than a lump in my throat feeling. I am in therapy and it has been a God send although I do not think I am depressed ( she says I am depressed due to a medical condition but it would be more weird if I weren't) but therapy has really helped me just now be able to move forward with a different path now. I do not talk to my husband much it is weird. I just find it wears me out. We have our separate rooms for TV watching and since I am sound sensitive it works out great. I love him, he is great and all but I just cannot do all that chatter. I wish I could offer you some words of wisdom but do not shut the world out. You cannot push yourself either but you have to have fresh air and a life. I also have to mention the PTSD which can happen after such an event. Good Luck Maryb
  7. I had that test done many years ago and I passed it but before SAH like maybe 2008 I was tripping a lot and losing my grip which resulted in 3 black eyes one summer. I do have fibro for about 10 years and seemed to have problems in winter with Raynaud's with my feet turning almost translucent. I started Cymbalta for the fibro and it got much better. This was 2-3 years prior to the SAH and all that followed. I am now also on similar medications at much higher doses, I also am on a channel blocker since SAH. Good Luck, Sorry I wish I could help you more. Maryb
  8. Hi & welcome! I had my SAH 9/16/11 and I started a stabbing eye pain past summer to the point I saw my eye doctor several times and after my last mri in December I was told by Gp, Neurosurgeon and Neurologist it was something else so please continue getting it checked out. I wanted to just gouge my eye out for months, I found covering my eye when I am outside helps- with sunglasses that wrap a bit. Good luck Mary
  9. Hi John, I was just passing through and saw your message. I am sorry that this has happened to you. I too seem to have a rough October and had some neuro psychologist testing done and did not fair well on it at all. I was told it was time to apply for disability. I have to say I was rather shocked and upset by the bluntness & truth of it all but really the therapist has been a God send for me. She has really helped me refocus on what I need to be doing. It is a darn shame I could tell people what vaccinations their dogs needed but I could not plan a meal at home. I have had reduced my hours several times and right now work weekends when no one is there. If you want to pm me for what I have had to do to get my life in order please do so. It has taken a bit to unwind and decompress but finally feel like I am at least starting to have a life again. Well until noon everyday! I cannot seem to balance the taking care of myself as I needed to and having a job both. It was one or another and in the end I agreed my brain was more important. Take care, Maryb
  10. Same here Dawn. Now with the Trigeminal Neuralgia I seem to have this awful ear ache deep in my ears and noise has hit an all time annoying level. Noise sensitivity is not part of TN but maybe because I am having a episode it makes noise worse. I am back to the early stages with noise almost. Or maybe it makes them even more sensitive. Hum?? Thanks Dawn. Maryb
  11. I am so very happy my husband has never ever made me feel bad about my limits. There is a stage in your life when I think you just know you cannot do it all. I think medically we have seen and had our share of how lucky we are. I know it is harder for him to do more but at least now I feel I can just now carry my share with working so little hours per week. I think this is "In sickness and in health". I was never a lazy person and still do not feel I am. I just have to do less. And it is not as important as it use to be to have a perfectly cleaned house. I should say I am a little OCD so this has been big for me to let go......personally the sounds of my husband even emptying the dishwasher breaks my ears, someday when he walks upstairs and I can hear his footsteps it literally throws me over the edge. I wish he just sat in his chair with his I pad. I have to say that I worked my last 1/2 day today for the week with so many barking dogs I am mentally shot. I am just over the edge and finally now with working less I can wrap my head around having a meal with left overs for days like today. I totally lost cooking and it was difficult to cook, shop, plan a meal etc. The whole thing was just crazy for me and I did not get it. I am working on that now. But when I work I give myself permission to take the rest of the day off and if I can do something it is a bonus. I think if you were not lazy prior you won't be lazy now you are the one that over does it constantly! I would let that one go. Therapy has really help a great deal the testing to see my new IQ and where my deficits are. I learned if you are distracted and have no attention span you must rearrange how you do things. The therapist also has helped me let go of so much stuff that really was nonsense now looking at it. She kind of scares me. But she is right and will call me out on things that "are none of my concern" at work etc. she just draws a nice line for you on getting well first. Now I really for the first time think taking care of my brain is the most important thing I can do for my husband, family and myself. Maryb
  12. Love this "you don't crash into it - it comes up and stops you". Very good line. I may add I have been a on stimulant for about 10 months and I still crash by noon. If I do not take it I crash 2 hours after I am up in the morning. I hate taking it but literally was very interesting in the beginning how light bulbs were being turned on all of a sudden. I really look at the fatigue wall as you are just doing too much, I make time at noon no matter what that I am going to rest "before" the wall "STOPS" me. I am missing work and when I go there either I think I can push it like a crazy person again or I am just overwhelmed by noise and commotion I am always so surprise when I am in some office when it is so quiet- I think I could work in a quiet place but I do not have the attention span to start a new job.
  13. Hi All, Hope everyone is having some sunshine. My question is "Does anyone know the medical reason why noise bothers some of us so much?" I am so cringing with it again and I was wondering if it is that the lack of attention span it startles up and distracts us ( and I am very highly distracted) that it bothers us or is it more? I have been doing more home chores but Geeezzz the sound of dishes and pots and pans drives me insane. I cringe just as much as when my husband is putting dishes away. Or barking, and sounds in general have been really bothersome since SAH but do not medically why? I should say with the trigeminal neuralgia on both sides my ears often feel like I have ear aches which is the new normal but no one is bothered by the noise like from SAH that many of us suffer. What is that from....some wise one answer that for me. Good question for neurologist or neuropsychologist but do not have appointments coming up. Thanks, maryb
  14. Win, That is wonderful news! You must be feeling so pleased! Good job Winnie! Maryb
  15. The real interesting question is why do not they not send you home with that book of instructions that we do not get but if we did they should include what my Neuropsychologist said to me recently ( after 2 1/2 years). You must eat healthy, take time to rest your body everyday, and do some form of exercise and have joy in your life. Lucky I had the diet thing already pretty much down! But geez this is such good advice and so simple! Along with a good reference to a well balance whole food diet without all the additives etc..... I drink a soda and I know it for days! I would love to drink soda or "pop" is what we call it but it makes my nerves ending on fire. I drink ginger ale if my stomach is upset only.
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