Sandi K

Mary I'm so sorry these crazy symptoms are with you everyday. When I was working I struggled like this too but it's not nearly as hard for me now. The symptoms have eased signigicantly because m able to rest as I need to. I remember you mentioning the issue with sunlight prior to the Ritalin. I remember you were working outside and the sunlight bothered you a lot. I don't push myself very often anymore but when I do I pay the price. The symptoms for me increase with fatigue. The more tired I am the worse they are. The Dexedrine helps to give me a boost and luckily it's not giving me headaches. Sandi K.

Mary I have some permanent damage to my right eye but I don't always notice it anymore. I guess my brain is figuring out how to compensate? As with any of my stuff it depends how tired I am. The more tired I am the worse my symptoms are. Vision is one of the this that gets messed up, not just my right eye damage but my ability to generally see clearly. Things get fuzzy and blurry. I haven't had double vision for awhile but since I've been off work I've not been so fatigued that it would get that bad. I read on an iPad. It helps because I can change the font with my fingers and adjust the brightness easily in settings. I still use those cheap drugstore glasses almost all the time now though. Some days I don't need them but more and more often I do. I never go anywhere without sunglasses. I drive in the rain with sunglasses on. Sandi K.

Teechur, that's how I've described myself too, like the dog in 'Up'. Distracted by everything. Vanessa, don't worry if you get down again. This recovery thing really is hills and valleys. Thankfully we've got BTG to share our experiences. Sandi K.

This article offers some interesting commentary on 'smart drugs'. It was posted on the Best Brain Possible's Facebook page. http://www.thebestbrainpossible.com/are-smart-drugs-smart Sandi K.

I've often felt uncomfortable with my head in that sink, long before I knew anything about brain bleeds! I can't remember how close my appointments were to the 'event'. My doc now thinks I had a 'leak' prior to the big event though so it becomes complicated trying to figure out when it all started. Sandi K.

I didn't have whooping cough and I wasn't vaccinated. It's an interesting theory though, perhaps there is something to it. Sandi K. Xoxox

Mary, I'm sorry I didn't see this thread until now. You have so much to contend with. The SAH is huge on its own. But then you have other huge things, the stroke, brain tumour, and fibro. All of them by themselves would have knocked others down long ago. Anything else like your hurt foot and headaches, even blisters would be so hard to deal with because really, there comes a time when a person stops grinning and bearing it. I think you are one of the most courageous people I know. Your ability to laugh and make others laugh when you are suffering so much is such a gift. So many times you've brought me up when I've been down. It must take so much determination and willpower to get out of bed every day and keep that 'to do' list going. But you do it. Somehow you find a way and off you go. You come back here and tell us what you are doing and it helps me to think "ok, pull up those socks and get outside and move!". Hugs Sandi K.

H Vanessa, I've been there and felt the same way. I've felt like 'what's the point' and the dreaded word 'hopeless'. Recovery is very slow and it's extremely difficult for people to understand that we are ill. We don't have a bandage on our heads with a sign that says 'broken brain-healing in progress'. Hey, maybe we should have some buttons made that we can attach to hats?! During the healing process our bodies take us through all sorts of neurological symptoms. Our emotions go along for the ride and the whole thing is a roller coaster of ups and downs. How far along are you now? I think I was at the 3 or 4 month mark when I would cry at just about everything. Tears were constantly on the verge of eruption. This is a common thing that many of us go through. I would set dates for when I would feel better. I'd say at the three month mark, then 6 months, then 9, then a year. Each time a date would come up I would get so down. The thing is, I really do feel better. Better than I did at the beginning. I'm still healing and almost at 2 years. The timing is different for everyone and you just have to let your brain heal. It's your only priority right now. Sandi K. Xoxoxo

I'm thinking the standard of care differs depending on where you are and what type of bleed you had. I also had a PM NASAH and only had one angio, 2 days after the ct scan showed the bleed. I'm in Canada. I've not had a follow up with neurosurgeon since 4 weeks after the bleed and neurologist was 4 months after. I see my GP regularly though. I still feel rubbish some days but it does get better Bev. It's a slow process hon. If my docs were advising me to have a follow up I would do it. Sandi K.

Dawn, I'm sorry you have the dreaded fatigue. It took a lot of courage for you to talk to management about taking a different role. I admire your ability to see it and acknowledge it and do something about it so quickly. I hope they come back with an opportunity that works better for you soon. Sandi K. Xoxo

David, it's true. Your brain just wants rest and the more we push on the more it pushes back. You've been doing 40 hour weeks for sometime now, is it getting easier as time goes on? I had lunch with my boss last week and I'm hoping to start back gradually with a small project in the new year. I get reassessed by Rehab and Psychologist so it will take a few weeks once that begins. Sandi K.

Vanessa, it's wonderful to have you here to explain some of this stuff. Bev, I've reconciled the whole thing in my mind by believing that a blood vessel 'blew up' and when they went in (angiogram) to look for the aneurysm they found no cause and nothing to fix because the vessel ruptured and was no longer there. My bleeding stopped either on its own or more likely with the drugs I was given. Sandi K.

It's been 2 weeks now since I began the slow release Dexadrine. It's double the dosage of the regular Dexadrine I started on. The slow release formula is a bit different in its chemical make up and it's supposed to give me a longer day. The expectation is 12 hours. Unfortunately it doesn't work AT ALL. I may as well not even take it. The doctor suggested giving it a couple of weeks to kick in but it has not kicked in. My fatigue and neurological symptoms are back. I go back for the follow up appt on Thursday. There are other slow release formulas such as Vyvanse and what Mary is taking- Ritalin. I'm willing to try them but I'm also open to going back to the original which didn't give me many hours but during the time it worked I felt great and was so productive. Sandi K.

Hi Donna, our brains work in mysterious ways don't they. I wouldn't worry, perhaps your brain is protecting itself from the pain of why your family has gathered together. It would also be normal to be happy that everyone is together, even though your grans illness is the reason everyone is there. We bring comfort to one another. Sandi K Xoxox

Welcome to BTG Steve. Our stories are very similar. Take your time and get lots of rest. Drink lots of water, it helps with the headaches. At this stage don't expect too much of yourself. Your brain is frantically trying to rebuild neurotransmitters while still being in shock. It takes a lot of energy to do that. Sandi K. Xoxoxo

Dawn, I don't blame you for feeling bullied. It sounds very much like the school grounds where it's been decided you are different so you are being picked on. It's very immature and unprofessional. I don't what your laws are in regards to human rights but in my country your manager would be expected to be supportive in your return to work. It sounds like your manager is very unsupportive. Daffodil is offering some good advice and like the others and I'm wondering if you can have someone advocate for you? Sandi K.

Oh Mary, I do think about that. Falling into old routines is easy to do. It's what we know and old habits are hard to break. I'm hoping I can create new habits in a different position at work but it won't be easy. Sandi K.

Hi everyone, How is it going for you? Carl, Dawn, Cath, Mary, Macca, David and everyone else? I went to visit my team yesterday. First time in 5 months. I was so nervous. I was trying to figure out what I had to be nervous about. I wasn't returning to work, I hadn't told anyone I was coming, there was no pressure to go there. I loved my job and I had a great team. When I thought it through later I think I was nervous because of how sick I was when I left 5 months ago. All that yucky feeling came back. It was really good to see everyone. Lots of hugs and smiling faces. I really did have a great team of hard workers, creative minds, and good support for one another. I miss them. I peeked into the acting manager's office. For those that don't know, I was the manager and had to give it up. It was very difficult and there were lots of tears, months of tears. A good psychologist and occupational therapist along with all of you have helped me through. The amazing thing is, I looked in the door of my old office and saw it with someone else's stuff in it and it didn't bother me. Not even a little bit. Unfortunately he was out, I would have liked to have said hello. I'm amazed I had no twinge of sadness or -- anything really. I felt nothing, it was just someone else's office. I 'lived' in there for 5 years. This must be a good sign. This must mean I'm thinking about new opportunities and feeling excited about what's coming next! I will still work for the same organization when I go back in the new year but it will be in a different job. Not sure what yet. I'm so pleased with myself for how far I've come with acceptance. Sandi K.

Hi Daffodil, I have a hot tub and its fine. Neuro told me to stay out of hottub and hot baths for the first month post SAH but after that it was ok. Sandi K.

Stephanie I feel so badly for you right now. Of all the people to question how you feel, the last should be your immediate family who you need to lean on. You need your son's support. I'm wondering if he's young and doesn't have any experience to help him understand what's happening. Or perhaps he's pining for his mom from before the SAH and he's hoping his harsh words will bring her back sooner. He needs you to help him understand. You've had a life threatening injury that can take a very long time to heal. Honestly, if you could be living the life you had pre-SAH would you instead be relying on your son to move the laundry from the washer to the dryer? You aren't this way out of laziness. Despite all that, what's wrong with him doing laundry anyway? Stephanie, talk to him. Teach him about what's happening to you and reassure him that you are still 'mom'. Hugs to you, Sandi K. Xoxoxo

Hi everyone, time for another update on the effects of the amphetamine, Dexadrine. 2 weeks ago my dosage was doubled. It's still a very small dose. 2.5mg first thing in the morning and 2.5 one hour and a half later. For the first week my heart felt racy and my head zoomed. I had so many things 'to do' in my head that it was hard to keep it straight. A week into it though everything levelled out. About 9 days in I began telling everyone how wonderful I feel!! Happy and capable and dare I say it.... 'Normal'!!!! I still get tired in the afternoon and need some quiet time but I don't have the pain or weirdo neurological symptoms every time I'm tired. I'm so grateful for feeling like this. I haven't felt this good in over 2 years. I had my follow up appointment with my doctor on Thursday last week. She is astounded that this is working so well. The word she used was 'profound'. We talked about how there aren't any studies (or very many studies or research) on this. I explained that I thought all the money went into heart disease and cancer because they effect more of the population. She explained that the pharmaceutical companies pay for a lot of the research so they pay for studies where they know they can make money - the study proves their medication works. I'm only one person but I'm thinking those drug companies are missing out on a whole demographic by not paying attention to us SAHers! Next week my dose doubles again to a slow release formula that should give me a longer day. I must add that the medication has not 'cured' me. I went out to see a comedian last night in a packed arena. Had a great time! But the loud noise, the laughter, and the crowd brought on dizziness last night and a whopper of a headache this morning. It's worth it though. Sandi K. Xoxox

Hi Jimble, I had that too. It was very painful and I could only lie down for a short while and then have to walk slowly through my house to try and ease the pain. The pain was at the very bottom of my spine and I understand that it was the blood from my brain bleed dissipating. I would alternate ice packs and hot water bottle and that helped. It lasted a couple of weeks, maybe 3. I hope it eases up for you soon. Sandi K. Xoxox

Ditto what Penny says. Thank goodness you've got someone who will take this on for you so you can use your energy for caring for your husband. It's shameful how those staff are behaving. Sandi K.

Hi Karen, I don't think I've welcomed you yet so welcome to BTG! My brother-in-law had a severe stroke about 4 years ago. It impacted his ability to walk, move his arms, and his speech. He said 'no' everytime he tried to talk. This went on for the first couple of years regularly. It's less often now but he still starts many conversations with 'no' and then he will shake his head because he didn't mean to say 'no' but that's what came out. He can always say 'no' easily but has to think and concentrate before 'yes' comes out without a 'no' first. I can see that this frustrates him to no end. You've got your hands full but from what I can see you are doing a great job. He needs you to advocate for him and you are doing it well. You will need support too and hopefully there are some services available to both of you as Michelle suggests. Sandi K. Xoxoxo

David, you've done it!! 40 hours has been your goal and here you are!! Reading your post reminds me of watching an athlete run a marathon. At the finish line they fall over exhausted and have a horrible look of pain on their face mixed with a look of joy! They need rest and refueling before the next marathon. I'm very interested to see how your body continues to react to the 40 hours. You've worked so hard David! Congratulations!!! You won't have to add anymore hours. You are at the plateau. What an inspiration you are. Sandi K. Xoxoox