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MaryB

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Everything posted by MaryB

  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 doi
  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.
  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
  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 the
  6. I return to work too soon and did too much as well. My advice is to build up your stamina at home and if you can manage your home life with ease you can try adding a few hours a week. Good luck. Maryb
  7. 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 wer
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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 thi
  13. 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 ag
  14. 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?
  15. Win, That is wonderful news! You must be feeling so pleased! Good job Winnie! Maryb
  16. 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 so
  17. Oh so funny you should ask! I have had fibromyalgia for years and it is so affected by what I eat and how I live my life. I also was recently diagnose with Trigeminal Neuralgia Atypical ( as it shoots nerve pain though both side of my face but mostly right side and right eye). I have been treated for cluster headaches since SAH but about 9 months ago my head pain changed. I asked the neurologist at the last appointment if diet plays a big role in this nerve face pain thing as it does with the fibro ( I had much neuropathy in grip & falling about 15 years into it). I just assumed that if
  18. Hi, My 2 1/2 years out came with me greatly reducing my hours at work even more. I was told to apply for disability, I was told my damage and the effects from my neuro testing showed I have no attention span or short term memory. I realized last fall I was literally blacking out on my long days and not knowing what I was doing. I was completely exhausted and it was my own fault for thinking I could power through this. I was actually going backwards. I have never asked if I did permanent harm or not. I was told to slow down, quit my job and take it easy for the rest of my life. Mind you it is
  19. Lin, Poor girl! I hate the dentist more than anyone in fact just got back from there an hour ago! But I know many that have had their wisdom teeth out with not one issue! I had a molar out before my SAH and it was a breeze! I was thinking it was going to be awful as I have many root canals and crowns. I also by the way take a muscle relaxer and a pain pill before I go for a cleaning and I am as big of a dentist baby as they come. I would go as far as to say I would rather have a biopsy in my naughty bits without an anaesthetic than go for a cleaning!!! Good luck! Mary
  20. Good for you Susan, I am glad he was interested in you. I had my second appointment with my 3rd neurologist today. I liked her much better today than last time. I really was ready for a bad appointment. I have to say I took the bull by the horns this fall as I felt I was back sliding and having some blackout moments in the afternoon at work. I made an appointment with a Neuropsychologist and she order neuro psych testing and I did poorly in some crucial areas of memory and attention. She basically ordered me to stop working and said I was destroying my already damage brain. It was nice to h
  21. Welcome Simon, How are you feeling now? Hope you are getting along ok. Maryb
  22. Welcome Stuart! Sorry you had the need to google and find this wonderful place but glad you did. Maryb
  23. Hello, I am sorry you are going through this. I had thought I was suffering from cluster headaches for the past 2 years and apparently my GP, Neurosurgeon and new (3rd) Neurologist all say I have atypical trigeminal neuralgia. My biggest issue was my right eye, I just wanted to scoped it out of my head it hurt so badly. The wind, cold air or me touching it can add a horrible pain. Now it is also my ear - deep inside. My teeth and jaw have been an issue for some time. I am just wondering if maybe you should look it up and ask if this is a possibility? I today found that laying my head on the he
  24. Boy, I am 27 months post SAH so I am in the new reality of "OH this is how it is going to be". I have drastically cut my work hours, I am hoping to be able soon to have a routine at home and maybe have some sort of hobby. Darn it, can't recall what this thread was about. LOL. My neurosurgeon said to me yesterday that with any sort of brain injury just like the football players in the news right now one does not know how any of the injuries will affect our brain now or in the future. I liked his honestly. I am becoming better at getting that my life style will be drastically changed soon. The
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