MaryB

Congrats on your one year annivesary. The next one still has some good healing as I have learned. I am amazed when I "get' something back I thought was lost now. I hope you have continued good health. I saw an eye specialist a few months after the SAH & Stroke. I have vision loss at like 10:00 left eye & 2:00 in right eye. I have adjusted to it but still think I am going to knock my head on something that is not there or do walk into a branch. I decided this summer to wear my big sun glasses over my glasses as they have side protection and a big straw hat so I can go into the yard again without poking my eyes out!! At least maybe not so jumpy about it anyway. LOL It gets brighter everyday, I told my dr the other day it is so amazing the brain, it fasicnates me when I get a light bulb moment. It reminds me of watching my kids grow up and seeing them "get that connection" on something new. I was secretly worried that if I did not have it back by 1 year that was it but I must say I am surprised at some of my lightbulb moments lately. Kind Regards, maryb

I just emptied the dishwasher myself and it was still awful!

That is wonderful at this stage Vanessa. Although I work for a veterinarian for the past 17 years I find recalling patience and clients very hard. I also to save my soul cannot recall the color of the animal. I refer to kidney failure, bladder stones, ate a rug....etc I went to see a therapist yesterday for the first time. I am working about 35 hours a week and it is mind blowing noisy and the sensory over load in beyond belief. A few weeks back I knew I could not go to the convention but many did. I was left with no staff being 3 short a day out of 4 or 5 people. It ended up well as it soooo very much calmer and the noise was next to nothing. So the next week I took the bull by the horns as the old Mary once did. So AGAIN the assistant staying with Dr. and the techs do their own job as we are often doing 1/2 or more while they answer phone questions all day. My frustration is so much better I hope this last, I would come home fuming by the unorganized chaos. In my world now it is working better and for the doctor. It is unfortunate that we do not have an office manager & my boss can be quite passive not wanting to hurt feelings. I do not think my therapist really gets brain injury but he was helpful with me going back to the Zen and trying to keep it. I need to work on keeping the other stressors. While it is expensive I think a few sessions will point me in the right direction. I worked a 5 hour ½ day today and felt like I was hit by a truck. It was a busy day and the plan stayed in place for me at least I only did maybe 4 tech appointments. But the noise and busyness of it all is still going to be something to tackle. I knew I was not getting my point across yesterday when I had said I had sensory overload and noise seems to be louder than it is. He said in his completely quiet little office it is like when the dump truck comes to empty the dumpster it seems really loud. I said no, that is not it at all. LOL . It is like when my husband puts the dishes away I cannot stand the noise as he may well be smashing them on the floor. But I cannot even speak up as it would crack my head open if I did- Ijust shutter. I work with barking dogs all day, with phones ringing , radio on ( ??), intercoms and 5 or 6 conversations at one time in a 12 x 12 room. It is never ever quite except at night and the weekends. So when I am next to someone tapping a credit card on the counter it is like bullets being shot next to me by the end of the day. But it beats beign dead I guess!! And I do see improvements all the time. I think I would be better if not working but I thnk work has also maybe made me have to think more and that has made me heal that brain in a way? Or "my Brian" as I often say!

Bless you Amy! I am in the States, I did have my own nurse but for me I was in a daze most of the time and never fully understood the magnitude of any of this until months if not a close to a year later. I still cannot tell you exactly where my bleed was as my neurosurgeon found it on the scan in "a rare part of the brain". I really for months was not even fully prepared for how long this was going to take. I also have copies of most of my scans. I have learned more from reading. I think them taking a brain diagram and circling the areas etc is what I needed most as I am visual and we are all forgetful with memory issues now as well. A page or book of sort explaining the areas that things happened. I had a stroke and was misdiagnosed as well at first. Never did anyone say it would be months and months before returning to work, that I was lucky to be alive, or could I comprehend at my 3 month MRI that I had a mengimoma tumor as well. I knew they had to do the flap dissection and it would take 3 months to heal as if I had brain surgery and I heard them make the mistake and felt the horrible pain during the angiogram that cause me to have the dissection done. But they knocked me out when I started screaming. I heard the mistake clearly and the conversations going on and later my surgeon who I love:) explained it to me. I think after you leave the hospital you need follow up phone calls and some direction. I just at 15 months can tell how fast a car is going before I pull out. I of course would wait until all the cars were gone first. But the healing process is long. I feel as if we are ignored as no one knows the answers. I had no hand out on brain injury etc… I knew it took me 15 minutes to look at all my white socks before I could pick out a pair for months. I could not process cooking a meal for almost a year until I was put on Ritalin. I sought out my doctors and went through a few neurologists and now I am seeking some therapy to pull the last of it together but when I talk about noise sensitivity he compared it to the garbage truck coming and dumping the dumpster. AND I had to correct him it is an over load of sensory and I feel like all noise is so much louder than it is. I have a tender head and no one can answer that, it seems as if even to say “Yes, that is something people have experienced in the past but we do not know why”. Would be better than us thinking we are crazy for mentioning it. This is my input. Maryb

Tony - Check out the thead about holiday drinks.........I can handle 5 guiness or corona's but hard stuff scares me. I knwo that is my limit but I do not even feel they affect of drinking. And it is on rare occasions I do. Also I was a bit depressed at the 1 year mark as I read and thought that is as good as I will become but that is not true. I told my dr the other day it is fascianating with the brain when the connections light up. I am repeating myself as I said this to Fern last night. But things like I can tell how fast a car is coming now- sounds scary I did not know that b4 I had sense but always waited but it is working again. Still when fatiqued I am done for the day. Work is like 1000 x's the stress and noise I can handle but you know what I am not alone with that others are not working so hot under those conditions either. I am not the ONLY person going home at the end of the day unable to even talk to their spouse. Check out the green room! How was fishing? maryb

I use to work with the lowest and highest children in school 5-6 years olds as an aide. I loved it when that light bulb moment would hit them and they grasp something new. I feel that way now; I look at in amazement when I suddenly can do something that I could not figure out before- like cooking took a year. It is very interesting how the brain works and feeling those light bulb moments. You want to share it with people the whole experience and it is really cool that there is a video of Jill Taylor Bolte describing her event. I do find this whole thing fascinating sometimes when I am not so tired I could sleep for a week! Maryb

Welcome! Glad you found this treasure of a site. Good thing you knew about that Jill Taylor Bolte lady! I had never heard of a SAH or NASAH before but I knew something was terribly wrong and I needed help. I happened to get the same ER Dr. 3 times and the 3rd times after I was released from a 2 day stay I was back and he had Neuro in a bigger city studing my Scans and transfer me to a wonderful neurosurgeon who met me at the door at a bigger hospital. I had daily headaches for 5-6 months than they stopped and returned when I returned back to work- go figure. Rest & drink plenty of water. Keep that brain hydrated well. I wish I would of taken a walk daily outside. But than again I had broken my foot shortly after the head thing and it was winter as well. But that is the only thing I wished I would of done differently. I think we may all have some PTSD - for me it was a traumatic thing where I cannot stand to see football or cringe at things that make you hit your head. I am not sure if I suffer worse than that or not. I would have a really hard time if my boys were younger and in sports still. Memory has improved but there are many 3 steps forward 4 back. I noticed the other day I was able to finally tell how fast a car is coming before I pull out. I normally just wait until the road is empty. I live in a small town. Do you have any fatique? That is one of the issues that many of us suffer from. I still am fatiqued often needing to totally be alone and sleep. Noise? Super sonic hearing? Welcome and feel free to ask away! The Green Room is for daily what you are up to & you know how to post a question already ( good for you it still takes me forever to recall how to do that!) Maryb

That is wonderful Mel! I went back to work at 5 or 6 months phase back and this Tuesday I start seeing a therapist for me not dealing well at work! I wish I could afford to quit and give up my health insurance plan but that can't happen yet. I cannot expect people to understand that tapping a pen on a desk is more than just annoying to me it is more like I want to and have grabbed it out of there hand. I know these are things i need to work on. Running - I admire anyone that jogs. I think that is just great you have found something that gives you endorphines (SP) and confidence you needed. I swim twice weekly and I feel like a child when I am in the pool. I wish I could do it everday. Continue good luck! Mary

Hello all, Silly question maybe but since I have not googled "annis" and coiling & read everything ever written about them because I did not have an anni and coiling. I Google other things and save them all in favorites to review over and over. Because I cannot always remember everything I read. Is it easier to have coiling surgery with much less side effects/ affects (sorry have to look up which one is proper every time I use that word) than one burst and have surgery? I know surgery is always a risk but is it a lot better? GOD knows no one would want it to burst but I am ignorant on this subject. If you have surgery IF / before something happened is recovery much better or about the same? Or is it all depends on whom, where it is etc....? I understand them watching the size etc. I think I understand that "watch it" anxiety as I have what they think is a non cancerous tumor slightly pushing into my cerebellum. That we are "watching" as well. Surgery freaks me out but it freaks me out if it grows and I loose function as well. Thanks in advance for any insight you could give me or your own expeiences. maryb

Hi Carty, Nice to meet you, sorry about the leg! I broke my foot the first month or 2nd month of my recovery! It really was perfect timing as I had no where to go in that boot! Hope you heal soon and are able to walk the dogs again soon! mary

My daily headaches stopped at around 6 months I believe but overwhelming fatique was still there. I had a return of headaches almost daily from over doing but they are like a 4. My neurologist started me on ritalin at 13 months to see if I could stay awake in the afternoon. It was incredible at first and literally switched on the part of my brain that made it possible for me to make a meal again. It was amzing when that happened as the whole kitchen thing was so confusing and overwhelming I could not jsut go in there and make a pot of soup and wrap my head around the any of that. I also was suffering that awful fatigue for 6-9 months prior to SAH and I never had that BAM head exploded moment but more like did not feel right, went home ealry from work, went bcak to dentist to see if it was the tooth I just had worked on, to emergency room for medication for nasusa, home to bed, up with vomiting and awful lightening headache. I suffered a stroke as well and that is what they found first. I guess I do not recall how and when I got to the bathroom floor though so maybe I did have a BAM moment but do not know about it. I however have had occular issues with migraine auras getting worse for a year, I had only one true migraine in my life 20 years ago but suffered from occular auras since. I still have those often. Almost contast floater in my right eye when tired or try to use the microscope at work. My neurosurgon thinks I possibly have/ had come down with Chronic fatigue Symdome b4 SAH and that is what caused my extreme fatique. That is possible as it goes along with the fibro and makes sense but ???

Ok Donna~I know you are most likely really sick of seeing my name next to a post but I found this pamplet that was given to me by maybe Keith??........I look at it often and I do many things sitting down- sorting I love to sort and organize now. I should go work in a silent factory somewhere. Anyway I hope this is a help. http://www.gloshospitals.org.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI1016.pdf maryb

http://www.gloshospitals.org.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI1016.pdf Brain injury pamplet we should all get when we leave the hospital.

Welcome Tony! Yes, it seems there is a shortage of medical information for us but this place is a gold mine. I was not diagnoised after spending a few days in hospital and returning home to find I was not really much better once they took my heavy duty pain meds away. I had a NASAH - unknown reason and when I went back to hospital I was lucky that it was the 3rd time that that same emeregency room Doctor saw me. I was transferred to a bigger better hospital and my bleed was in a rare deep spot and not found until my surgeon studied my scans. I hope you start to improve soon and you find much helpful information on this site. This has been the one constant thing in my recovery that has held me together knowing that this is all normal. Neurologsit and Neurosurgeon do not say much at all. Thank GOD I love my GP and he gets it and understands me. Drinking a lot of water helps much to keep your brain hydrated along with sleep. I would say a healthy bout of fresh air helps as well. Maryb

Danny, No I do no hard cardio I think my head would explode - really it makes me instantly ill. I do swim aerobics as it puts not pressure on my joints and muscles,. I have fibro so any repeated motion is not really good on me. I work as a veterinary asst. at a small animal clinic. Although the oldest person there I am one of the most physical with getting on that that tile floor all day. I try NOT to lift the big dogs but I wrestle alot! I think at work I have adapted to an easy ZEN like way of working with my big animals as I can get the blood draw with owner just holding the collar so if possible I try to read my situtution and if it is not going to be a rodeo I am ok or i call in a few young people and walk away now! I normally have no energy left by the time i get home. I am done for the day but 7:30 to 5:00 with barking dogs, phones ringing, people talking in a fast paced enviroment does trash me daily. I woudl glady work less hours if it were not for the insurance right now. It leaves little left for my evenings.

T, I just returned from swimming and it always helps!! Anyway I had several of those nasty bugs in a row this winter and it was down right rotten. No do not with it on anyone. I was drivnig home from the pool tonight and was thinking about certain often confusing items at work and how to be sure not to make a mistake I would leave the item out to show someone. I do not need to do that or if someone wants me to get something it clicks what it is now as well. NOT 100% of the time but even better than a few months ago.

Flying itself did not bother me but the crowds, noise and movement did and I was very off balanced for a few days. Now I look back and I think it was we did too much. I should of rested the next day more etc.. I was shocked that I was not as well off as I was at home in my normal rountine. I cannot fit another thing in my life either. I have a GP appt tomorrow as I have given up trying to exercise on my own I cannot do that with working. And i know myself well enough that I need to be in a class suz at least I am competitive (they say). I have had high cholestesol forever and cannnot take the medications as it makes my muscle hurt,. BUT now they have newer meds out. Since i have already had a stroke and some damage, along with up adn down all over the place blood pressure I fear eating right is not enough for me and do not want to press it! I am giving in to the meds. Back to having children at home....When my children were younger and in school our parents were all dying one by one. I was doign the raising kids and taking care of parents at the same time and none lived closer than an hour away. I felt liek a horrible mother for not beigng present in my childrens life with school events etc... you see those parents that dont work and never miss anything - i was not that kind of mom and I felt guilty for beign spread so thin. It felt unfair. What I found out now that my kids are in their late 2o's is that they learned much from their parents being stretched thin and stuggling with crisis and all that. WE made our wills when the boys were young. I had a plan. We both had big life insuracne policies so if somethign happened to one of us the other could afford proper care for the kids. I wanted a grandma nanny to replace me when Dave was working, someone that helped with meals, homework etc... I felt so much better having a plan. I think in life we all need a plan. Sometimes a back up plan to leave an abusive sitution or a plan for a torando or some kind of back up plan for life where we are. It helped me with knowing my kids woudl be OK with or without one of us. Because we planned and did not sit and wring our hands about making hard decisons. I knwo have an end of life plan I had updated this summer of the conditions I will not or will be kept alive if something happened. For me after handlings estates of parents etc I think it is the least thing I could do was not to leave the tough decisions to my hsuband when he may be thinking with his heart and not his head. I am sure none of all my planning will ever come into use but it just felt better to have things covered just in case so I did not have to worry about oe more thing. On that happy note I will not reply to any more BTG post today! Sorry for being so straight forward - you know us Americans....

Welcome Danny! Glad to hear you are doing so well. My SAH stopped bleeding on it's own as well but after a few days of being treated for the stroke I suffered from the high blood pressure I am sure. I understand you did not have any anni's so it was a NASAH? And will probably never happen again. Life is so much different the time wasted on nonsence is gone or on people who love a life of drama. Life is for us living and to make the most of it. I had moments of great peacefulness that was looking very pleasant while laying on my bathroom floor or I could keep that lighteing striking me in my head everytime I took a breathe let alone moved, along with vomiting at each movement I would come back and say I need to get help so I army crawled to wake up my husband. A lesson for me was it was my second time at the ER that night, and I was a bit embarassed to go back. I thought it was just the worst headache ever or a bug or something. I think back about it and it is ok to be embarassed, I am thankful the doctor recalled I was in earlier. I think for weeks I held my head in my hands to keep my head from moving. Did you have to return back to work? How is your vision now? I lost some in the 10:00 area of left eye and the 2:00 of right eye. Sunshine hurts my eyes and give me a headache or migraine now. I spent no time outside last summer as it was hot and sunny every stinkign day! But now I have a "plan" to wear my old lady sunglasses over my eyeglasses and a brimmed hat so I don't run into things like branches etc in the yard. Either I am running my face into something or I think I see something that is not there and jump like an idiot. That is my plan to NOT POKE MY EYE OUT!

PS about the MRI- the first time my head was stuck in one I said I was not clastrophobic (SP)! I did not know!!! I was freaked out. But I learned to breathe, keep my eyes close or have a towel on them- they should just DO that anyway! I know this is not proper to write here but I think about my brother in law former fire chief trapped in a burning car with his great granddaugter in the carseat in the back seat - he was paralzyed from waist down at the accident and his window was only 1/2 open and he managed to drag himself to safety. The weird thing was he accessed the situtaion and knew what he had to do while in shock but the bystanders ( pile up accident) helped no one which was so unreal and he had never seen that in all his years of rescue. I see this as unfair to this man. I see this as why does HE knew that nightmare?? My point is when he panics in the MRI or CT machine I get it and say I am so glad I am not Tedd trapped etc and having THAT nighmare of a panic attack. I can talk my slef down adn stay calm saying " I can do THIS". Also one of my dear friends lost a child and she said the saddest thing was the only time she was not stuck so deep in her own grief was when someone had a worse story about losing their child. I knwo that sounds awful but it is so true in life. I use this "method" to snap out of it at times. Sometimes those handful of life changing events are there and we need to learn a lesson from them. I sat and listen to a few in my life that were markers of how and when my life changed. I am no way trying to make you feel bad or take away anyones right for grief or frustations of where we are at personally or medically but this is how I cope. I do not think this PIA head thing is anywhere near the pain and suffering some of my family & friends have gone through. Even though they say I am their hero, I am only coping well though knowing how much suffering others have had. I did not or will not forget the lessons of courage from them. I am terrified of the angiogram so that is where I would need sedation and some real help so I have my own fears but I can find a way to cope now.

Donna Darling, I feel so bad for you. I can only say what works for me ~ Old and wise ya know?? I have had to learn coping skills 20 years ago as I am a chronic pain sufferer. No one believed me when I had fibro prior to being diagnosed and even after some look like I fake it. But I have a wonderful GP and that is helpful as he knows it is real- all the stuff with head as well now. I have adapted my life style the way I do things and such forever. I am even amazed at work when someone needs 2 or 3 people to take a dogs temperature as I have always worked weekends alone I have learned how to adapt and come up with ways to make my life easier. I will not allow my mind to be consumed with WHAT IF’S in my life as I have a dear friend who has wasted so much of her life with that and made her family all with whom have medical issues just miserable. Life is for the living – RIGHT NOW. I do not listen to that voice in my head. I really do not anymore. I used it to quit smoking in a good way 100 years ago but I won’t let it say negative things or fill my mind with worry. IT EXHAUSTS me like nothing else can. So there are ways to shut that voice up. Couple of things I try not to concentrate on it too much. I do more than I like as when I walk I have blind spots and almost poke my eye out on a branch or something OR I THINK I am running into something that is not there. I discovered I can sit and look around now but when I walk in grocery store or my worst nightmare- I notice if I stand still and graze the items and not walk I can handle it better. I cannot handle noise and that I am not so good with at work I want to just hide somewhere quiet. I came home last night after buying a frozen pizza for dinner and I do not know if I said anything to my husband – not even thank you when he brought me my plate. I completely need to be alone. Not even energy to talk. I only have clothing that fits in my closets and dressers so I do not have a hassle picking something out as I cannot make decisions. I like task like sorting my spice cabinets – everything neat and organized helps me so much and I can focus on these little task that give me great pleasure when done. Sounds silly but I can be very happy in the basement sorting and what not forever. It sounds like busy work but I get great pleasure and satisfaction with completing task that organize my life. I still have many issues and questions left unanswered and I am frustrated by that but I know they have no answers for me. The thought of having my tumor removed scares me to death but I do not think about it. I have to let it go and worry about that when the time comes. It is work but I cannot let it drive me crazy. I need to be thankful for the good and sometimes I have a hard time seeing the good. Like an inspirational poster makes me want to slash it!!!! It is like yea, easier said than done! I work hard to daily do my best but I tend to overdo it and pay for it but I know that is how I am and that is still a work in progress. Good luck, mary

You are one lucky guy with that plan!!! Thank you, I think I need an insurance counselor!! That is a great new career for someone to tell you what you need and how to get it. Instead of trial and errors.

Welcome Bluecat1, How lucky you are to have been taken care of before a burst! I do not have anni's and I cannot imagine what that is like for some people with them and knowing they are there. But I may be even, as I have a brain tumor next to my brain stem!! That is a big deal about insurance in the USA. People that have not had a major medical expense ( husband had kidney cancer) do not understand it is impossible to get it unless your employer offers it. My husbands employer does not offer it for the 10 people in his company so I am having to hang on to my job just to keep it. He was denied 3 times when we tried on our own prior to me having to take our companies policy out. Along with the $8,000 out of my pay check or more a year we have a $5,000. each deductable. So you remain insurance poor. I am grateful as we racked up almost $200,000 my SAH & Stroke year as well as my husband had a heart procedure done but ......I really have no choice on leaving my job at this point which feels like it takes days off my life everyday I work. No more ranting on that subject as I am bitter and angry that I am working so hard as I feel it REALLY is not good for my health and feel trapped by the system. Maryb!

Congrats Teecher, Sorry you are sick but it is nice to have that first year under our belts! Continue to keep your bright and happy outlook. Maryb

PS. I cannot cope with any outside of necessary activies - I go to water aerobics and that is it. WE go to dinner about once weekly I realize I cannot belong to any commitees and ever go shopping like I once did but once again with working or children at home it does not leave much room. Heck a trip to the market is like working 6 hours for me. I just realized I cannot look at stuff while walking so grocery shopping is a high level activity foe me!! I know we are all at different levels of recovery and had different 'damage" etc. so my HATS OFF to those of you doing both! PS Going for a massage is one of my favorite gifts to myself.

I often once again wonder about the pain and the fatigue we suffer being similar to Fibro? I cannot stress enough how when I hear your stories it makes me go back to not having a name for my "pains and exhaustion". NOW after the SAH and stroke I am still that way but I believe the medication for my Fibro with it nerve blocking abilities help my overall body pain. My head/ mind are another story. But the pain you all describe is what my fibro pain was like. My legs were so painful or so heavy I felt like I was walking in quick sand. They just ached and I felt like I wanted to wrap them really tight or punch the pain out of them. My feet hurt so bad it took a good ½ an hour in morning to walk correctly. Sometimes I need to soak in a hot bath with epson salts. Sometimes walking up the stairs I felt so weak that I may have a heart attack. If I over use a muscle it was killer pain like bursitis not muscle pain. It hurt to poke me in the arm – like with your finger. My diet and sleep also have a giant impact on my pain. I feel so much better if I eat whole foods, fruits and veggies. Anything processed is awful for me as well as soda/pop/cokes, fats etc…. I ache so much more from messing up my diet than I thought possible. I too take narcolepsy drug I started in Sept at my one year mark as I could not stay awake past noon everyday and it was a 4 hour nap. I take Ritalin and it helped a great deal in the beginning but now even at a higher dose I still am tired by mid day but most days I can stay awake. I wish I could function without medications and maybe I could if I did not have to work and life was a bowl of cherries!! I cannot imagine working and having a family to take care of at home. That would be asking too much for my body. I worked a long shift and today I was so glad it was my last day as my head was over loaded, I could not read I was just trashed from doing too much. The noise was extra loud, nothing was working well. There is a point I feel like I need everyone to be quite and get out of the room so I can finish my thought or get into balance of what I am even doing. Good luck, I say over doing it does not pay. I seem to be an “expert” at pushing myself but I am learning slowly. Maryb