Sandi K

Hi Amy, welcome to BTG. I'm in Canada but there is a common theme with most BTG members regardless of where we are from. Once we leave hospital there is really no support. We are left to search the Internet if we are capable and then once we find BTG we finally learn about what is happening to us. More will come on with more details. Good luck to you, I think this is a very worthwhile objective you have. Sandi K.

Hi Tony! Welcome to BTG. It could be me writing your post except I was in a meeting at work when the smack on the back of the neck occurred. We all recover at different rates. However, many of us are told that we can get back to work and resume normal activity levels in 3 - 6 months. Because we are all told the same thing (or pretty close to the same thing) I thought there was something really wrong when I still wasn't all better at 3 months, then 6 months, then 8 months, and so on. None of us can tell you when the headache will stop and your fatigue will go away. We are all different. There are commonalities in the symptoms we experience though. Most common seems to be the fatigue, and it seems to hang around the longest. We all get head sensations, some are headaches of varying severity, some are feelings of a tight elastic band around our heads, or some get a tender to the touch head, and some have sore sinuses. Some of us get all of the above! The doctors seem unable to explain it. My GP says there just isn't enough research. The neurologists and neurosurgeons have done what they can with us so they discharge us and we are left to figure out what's happening. I've found great support here at BTG, there is a lot of information here and people who can answer some of your questions or support you through the experience. Is there a local brain injury support group near you? Many have found that to be educational and helpful. Sandi K.

Hi Danny, it's been 2 years and 2 months since my NASAH. I am back on the treadmill, doing some minor weights, and on the exercise bike. I was told to wait a year before lifting weights. I'm not running marathons but managing to get the endorphins going and the heart pumping and it feels good. It took me a long time to get into a routine where working out didn't end up being the only thing I could accomplish in a day! I'm not working now. I went on sick leave in May after trying to go back to work twice. When I was working I had no energy to do anything else. The doc wanted me to do 30 minutes of exercise a day but I spent all my energy at work. It's been a slow climb but I'm feeling better and doing some volunteering now. Hoping to get back to work in the next couple of months. We will see if I can keep the work outs going then. Take your time with cardio and the gym, you'll get back to where you want to be but there's no hurry. Your brain needs rest. Sandi K.

Hi Danny, welcome to BTG! Lots of warm and caring people here who understand what it's like. Sandi K.

Hi Jane, welcome to BTG! Lots of support here from people who know what it feels like. I went back to work twice only to end up on sick leave both times. I went back too early. All of us have different recovery times so it's hard to know when is the right time to try working again. How are you doing being at home? I'm not sure what pleurisy is but will google. I hope you are beginning to feel better and getting lots of rest. Sandi K.

Happy Anni-versary Teech! It's been a roller coaster year and you are doing really great! Sandi K.

Hello everyone! Wem that computer stuff and the concentration required really does take it out of you. I did 2 days in a row last week (volunteering) and didn't make it to the end before symptoms started creeping back. Tight head, sore arms and legs. I had been in excel the second day and went about 45 minutes before lifting my head. Felt awful that afternoon. They are only 3 hour shifts. Did it again this week but the excel was on the first day and not as long. The second day I worked in a filing cabinet the whole time. Then I went to the dentist afterward. The tight head didn't start until I was done at the dentist. I felt fine after a rest at home and I feel great today! So hopefully this is progress. One day at a time. Will try again next week. Sandi K.

Hi RBR I've been wondering how you are. It's been a long time. Are you working full time? I'm one of the people David wrote about. I'm taking Dexadrine which in Canada is normally prescribed for narcolepsy (sleeping all the time) and ADHD (to help with focusing attention). I've been taking a low dosage since September. It has definitely helped me. It gives me an extra boost and I'm more productive during the day with fewer neurological symptoms and less fatigue. I can't say it has completely taken it all away though. I can still overdo it and I still feel the effects of overdoing it - but at least I can do more than I could without the Dexadrine. Sandi K.

The leaf blower is my biggest thorn. Also don't like loud TVs and shows where the music drowns out the voices. The noise of the scanner/photocopier is like nails on a chalkboard. There are all sorts of noises that bug me that I never used to notice. Sandi K.

I have the same problem with what I call 'bionic hearing'. My ears are sensitive, I hear everything and too much noise brings on the fatigue. I've put my hand on other people's when they are clicking or tapping pens. I give the evil eye to people who are crinkling paper during conversation. I can't stand noisy fidgeting. At tables with multiple conversations I have to say I'm sorry, I can't hear unless its one conversation at a time. When I'm in a situation where I've been 'assaulted' by noise it's a massive and instant relief to be in the quiet. I use earplugs in restaurants and although not perfect it does help to buffer some of the noise around the table. I like Dawn's suggestion of an iPod in a work environment. I had neurocognitive testing done and my report said that this is likely a long term effect from my SAH. The neuro psych explained to me that it takes so much brain power for me to concentrate and filter noise that it drains my energy quickly and brings on the fatigue faster. So hence the relief when it's quiet. I can do more for longer in quieter environments. Sandi K.

I like the snow globe comparison Along the same lines of "Rome wasn't built in a day" a longtime member of the Brain Injury Society I volunteer at said to me yesterday "getting back to work is like eating an elephant. Yes you can eat an elephant. Over a long period of time, one bite at a time". Sandi K.

Hi there, I can relate to your post. Sounds very much like me. Your brain is telling you to slow down, it needs more time for healing still. I found it really difficult to give up any 'ground' I'd gained, I'm not sure if that's how you're feeling? Truth is, you are recovering from a brain injury and it's not failing if you have to scale back for a bit longer. Remember that you were 'trying' to add more hours. Well, you've tried and found that its still too early. It's not a failure and you aren't letting anyone down. By scaling back your hours for a bit longer you will be allowing yourself to continue to be productive at work. If you continue on the path of doing too much you may get to a point where nothing gets done at work or in your personal life. Believe me, that feels awful! Keep in mind that you have a accomplished quite a bit since your SAH. Take pride in that and hold onto your successes. You will get to your goal, give yourself time. Listen to your brain. Don't worry or be afraid. You just need more rest for longer. Have a read of the 'back to work' thread. There is a mix of stuff in there that may help you to see that we all go at different paces and you must follow your brain's pace. You really are doing very well. Sandi K. Xoxoxo

Welcome to BTG I'm two years on. I started with a very gentle yoga a few months after SAH. Took me a long time to build up from there and I'm still not jogging the way I did pre-SAH. Fatigue is a big issue so it's important to find the right balance of exercise without bringing on fatigue and all the neuro symptoms that come with it. Go very slowly. What you are able to do one day may make you awful the next day. Pay close attention to how you feel. Your brain will tell you if it needs rest. It does get easier, just takes a long time. Sandi K. Xoxox

H Loretta, I've always been impatient but since SAH it's harder for me to hide it. At the same time i recognize more easily when people are struggling and I'm more sympathetic (empathetic maybe). I speak up more often when I'm unhappy with something now. I seem to see through people when they are saying something but mean something else. Life is short and I don't want to waste my time on stuff that doesn't matter or isn't true or real. I have also lost my temper very loudly with family members which is something new since SAH. My priorities have changed and it's become clear what is really important, when it's important to me I'll say it. I'm trying to remember to talk about things before I get angry. Sometimes though when I'm feeling so tired and head hurts and the fatigue takes over it's just too hard to think about the right way to say something diplomatically. So out it comes. It's those times when it's all I can do to get a few words out. Short sentences with just enough words but often lots of feeling packed behind the words. It's because I feel so awful and wham, the person standing there isn't just hearing the answer to their question, they are hearing the answer packed with all the emotion of how I'm feeling in that moment. It's frustration for not having enough energy to express myself appropriately too. For not being able to think and participate in a conversation because I feel so awful. I'm 2 years along in recovery now and the overwhelming fatigue is happening less often but it's not gone away. When I'm feeling it my husband and I know that I need 'quiet time' and we have to defer our conversation until my brain is ready again. Sandi K.

Bev I felt unease and anxious (downright frightened) of some things for months after my SAH. I was overly afraid of things and I look back now and think how odd it is that I didn't really see it at the time. Even though people were posting about anxiety and even PTSD here on BTG I didn't relate. I was mostly afraid to take my dog out around our 1 acre garden. I was certain that the neighbors dogs were going to come running after us. I was always on the 'look out'. I would make sure all the doors of the house were unlocked so I could pick up the dog and run back inside if I had too. I was also worried that a cougar might attack us. I was always looking and listening. I've been thinking about this lately because my dog has a disease that makes him pee all the time so there are trips outside all day and all night. Now I go out, in my pyjamas, in the dark, in the middle of the night, and I don't think twice. I don't look and listen and worry. It's a huge difference from just over a year ago. Now I walk my dog all over the garden and I don't think about the neighbors dogs. If they did come I would tell them to go home. It's odd how my brain turned my anxiety over what happened to me into being afraid of being outside in my yard. That's not where my SAH happened. I was at work when it happened. Sandi K.

Love this idea!!

Meditation and yoga have both helped me too. Yoga when I was having loads of problems with balance and coordination and dizziness. Yoga helped me feel steady on my feet again. Connected to the ground and solid. I've recently begun meditation classes as I've tried meditating on my own and although it's ok I wanted a class to really dig in. It's wonderful to calm the mind, to have stillness and quiet. My energy boosting meds help loads too. David I hope you pull out of the slump and that this year is much better than last. Sandi K.

I think it was this thread I had trouble answering last year? Can't remember. Last year at this time I was working. I was exhausted. I was making mistakes and taking on work to 'prove' I was ok when I really wasn't. I feel a lot better a year later. I'm not sure if that's because I'm not working or because it's a year later. Probably a combination of the two. I've had a well needed rest but fatigue is still just around every corner peeking back at me. A big part of feeling better is definitely in accepting what happened to me and adjusting my expectations. I still have a ways to go on this journey and I definitely don't have all the answers. I feel way more positive about things and less anxious. I struggle with putting a number on it. Oh- Mary that was billiant! Good job adding the link. Sandi K.

Alison welcome to BTG. You have great spirit and it shows in how well you are doing! It's important to talk about what happened and you've found the right place to do it. We can all relate. Sandi K.

Wem, good luck starting back this week! I'm looking forward to reading how it goes. I'm no expert but take your time, take breaks, and 'pace yourself' as they say. I was a lot like Jen in that I really didn't understand my own limitations. Pay attention to yourself, if you are feeling unwell take a break. In the beginning you may need lots of breaks. Jen, your post is so encouraging! To read that your job is helping your recovery is wonderful. What a great perspective. I began volunteering a month ago but due to the Christmas season and an unusual snowfall (I'm in Canada but we don't get much snow where I am) I've only done a few shifts so far. Already I feel it building my confidence again. I'm looking forward to going back tomorrow. Slowly but surely onward and upward! Sandi K.

Hi Inez, it's very early days for you. Go slowly and drink lots of water. Rest as much as you can and if your brain wants sleep then sleep. Welcome to BTG, lots of information here and people who understand. Sandi K. Xoxox

I like that word! Sandi K.

I've flown a few times after SAH, first time was only 4 months later. Flying is fine. I'm in Canada and was surprised to learn that my extended health insurance covers me without extra charge after SAH. Would be different had I had a heart attack but brain attack was ok. Different story for mortgage insurance, they said no way! Some BTG members find that hot climates bother their heads. I'm the opposite, sun on my face and a beautiful quiet beach move my recovery up by leaps and bounds. Sandi K.

We get so many strange symptoms, our brain telling us to slow down, that it needs rest. I don't know if that's what is happening to you - I would suggest going to GP as you have done. Our weird symptoms are often things we've never had before and I find it difficult to explain to my GP what I'm feeling. I've had a chronic sore throat off and on since October. It's not a cold and and I don't think it's allergies. It's more in the muscle and of course I wonder if its something to do with my carotid artery. It's hard not to think the worst and its easier to go there when scary things are all over the Internet. My doc suggested it might be a blocked saliva gland. I think the best we can do for ourselves is keep going back to doctor when we don't feel right. Sandi K.

Lynne, I use that wine glass trick too!