Sandi K

These are all things that many of us struggle with post SAH. Concentrating and focus are tough for me. Filtering noise is really hard. Decision making on small stuff can be hard if I'm tired or distracted. It all seems easier as time goes on though. I think it's a combination of recovery and learning to cope. You learn that doing one thing at a time works best so you just start performing tasks that way. I know I can't engage properly in a conversation in a noisy environment so I just tell people now. I say things like 'this is an important conversation, is there a quieter place we can talk?'. Or 'can we wait to discuss this later when there are fewer distractions?'. Today, I needed to focus on some contract stuff and just said 'I have a brain injury, is there an office we can move to because I can't filter out noise'. As soon as I said that the agent was very accommodating. you will still have skills to offer at work. You may find that you need to work differently. Learning to pace yourself is especially important so you don't become fatigued. Sandi K.

Welcome and great question! Most often I say brain hemorrhage (spelling is different in Canada) but sometimes I say brain bleed. When they ask further I say 'a blood vessel in my brain blew up'. I hold up my hand with fingers and thumb spread and explain that my fingers and thumb are the blood vesselsl. I explain that an aneurysm is a bubble or balloon on a vessel that bursts. In my case I hide one finger and say the vessel blew up. People usually say 'oh! I get it'. I don't know if that's the absolute correct way to describe it but it's close enough for me. Sandi K.

I'm almost 2 years post NASAH. A year ago I would have said I want my life back. Meaning, I want to be back to work full time with the routine from before my head event. Making that regular paycheque, succeeding in my career, feeling like I had the world by the tail. Up at 5am everyday, like a racehorse at the gate. Organized, excited, enthusiastic, full of energy and interested in everything. 6 months ago I would have said I just want to feel well. I just want enough energy to pry myself to a standing position on my off time. I was only working part time and all my energy was spent just getting through those hours. It was bleak and I felt hopeless. There was no fun. Now that I've been off for 4 months healing I'm spending my prescious energy learning how to conserve and pace. Learning what uses up my energy and brings on the symptoms of fatigue. I'm learning how to fit tasks into the day without overdoing it. I've got some medication to help rev me up and I'm learning how to best use that. I would say I want everything out of life. I want balance between work and family and fun (risking sounding like a cliche!). I want to feel productive and successful and part of of team. I want to be close to family and able to spend time with them and not worry about how much energy I'm using with them. I want time to spend with friends so we can laugh and learn from each other. I want to 'just know' how much energy I have and not have to think so much about how to conserve so I don't knock myself over. Sandi K.

I had my follow up appt with my GP today. She doesn't know how the blood vessel swelling is related to the fatigue but she doesn't dispute that it's related. She's not worried about the meds becoming habit forming for me because I've not had the problem in the past and we will continue to monitor my usage. It's been so successful to this point and the goal is to slowly extend my day. Right now I'm good for about 3-5 hours. My dosage will now be 1/2 a pill in the morning and the other half 1 hour and 30 minutes later for a total of 5mg I think it is. The medication peaks so this will give me two peak periods and extend the energy for more hours. Sandi K.

Hi Phinella, welcome to BTG! Lots of warm people here with good advice and feedback. Sandi K.

Hi Vanessa and welcome to BTG! I'm another pmnasah. Mine was almost 2 years ago. Everyone recovers at different rates so some bounce back quickly while others are never the same again. It's very early days for you. Focus on rest, drink lots of water, and don't worry about anything. Save your energy for healing. Sandi K.

Carl, good for you! It sounds like things at work are going well. Sandi K.

I can't say I'm unforgiving with people and I am able to hold my tongue and smile at their bull * but I'm much more aware and sensitive to it. I pick up on it much more easily. I just remove myself from the conversation by changing the subject to something 'safer' or physically moving away. Jill Bolte Taylor has a great quote 'take responsibility for the energy you bring into this space'. Don't waste your prescious energy on bull *. Sandi K. Xoxox

Dawn, I'm so angry after reading your experience at work. It's such a massive mountain to climb as it is and it's almost like your manager doesn't like your climbing boots! Geeeez, if you need earplugs to do your job what is the problem? At least you are doing the job and not gossiping with coworkers. If you need to talk about work stuff I'm sure you would remove the earplugs immediately if anyone indicated they need you to. I like the suggestion of writing all of it down. You are showing initiative and great effort in making your return to work successful. Your manager is knocking things down before they even happen. She's almost bullying you. She should be supporting you. What kind of manager only focuses on the negative? It's the positive that needs to be promoted in order to motivate people. She should be enthusiastic about your creative ways to make your work environment work for you. You are doing so well Dawn and it is early days. When meeting with your manager maybe ask her to point out the positive things she sees as well. Maybe that will help her see your determination and strong work ethic. Sandi K.

Karen, I haven't seen Rampmama on BTG since that time and I think it was over a year ago. That's the only contact I've had with her. My GP told me 'there is no science to back up' what we are doing but she thought it was worth a try because the amphetamine I'm on is also prescribed for narcolepsy (narcolepsy is falling asleep all the time). I don't fall asleep all the time but the thinking was if it fights narcolepsy then it must work for fatigue. Sally, my GP explained there are 2 paths for ADHD meds. The Ritalin path and the amphetamine path. I can't remember how she explained the differences but in my specific situation she thought amphetamines were the best option. It would be different for everyone based on their health and other meds they are taking. Sandi K. Xoxox

Week 3 is going well. I took a proper 1/2 sized pill yesterday and was a busy bee for 5 hours. It's so easy to remember my chores list and easy to organize the tasks in order to get everything done. I know I have a window of time so I work within that time frame and zoom around. It feels really good to feel the energy and be so productive! When it wears off that's it. Back to feeling dragged down, heavy, and tired. Cloudy brain. My follow up appt with doctor was changed for Sept 11 to the 20th. So next week I think we will upping the dosage. Sandi K.

Kris, some people are obnoxiously ignorant! How rude of her to be so presumptuous! All you can do in that situation is exactly what you did. Try and explain it as best you can and hope the person has an ounce of understanding. In this case she didn't! Sandi K.

I've experienced this before and after my NASAH and I never have a follow up migraine headache. I'm left feeling drained but otherwise ok. My husband has had it a couple of times too and he hasn't had a brain bleed so I'm not sure if it's related. Sandi K.

Dawn you are doing really well! It's really hard for our brains to learn new software. We tire ourselves out just getting through a comfortable routine and then when new things are added it can be quite overwhelming. I went through the same thing when I was returning to work. I made huge mistakes in budget forecasts and presentation material with new Excel. I was struggling just to get throug the day and anything like those mistakes made me feel like a total failure and incompetent. Truth is, even healthy brains have a learning curve and feel frustrated with new software but it is harder for us because we are healing and learning at the same time and it really saps our energy and then the emotions come out. I just felt there wasn't enough energy for both healing and learning but I didn't pace myself well at all. Your spirit will get you through tomorrow! Remember to take breaks and rest your brain. Your colleagues and boss want you to be successful too so they shouldn't mind if you need to pull back for a few minutes here and there. Sandi K. Xoxox

I am hopeful that the meds will help get me back to work. I feel a lot like the old me on them, similar energy level and clarity of mind. We don't have the dosage right yet though and because we need to adjust it there may be side effects so it will take some time. But I'm feeling positive about it so far. I have questions for my GP such as what long term use may look like considering this drug is habit forming. I'm also wondering if it's expected I would be on this for a short term or long term and how do we know when to try weaning me off down the road? I want to know more about the swollen blood vessels too. If that's the problem then maybe there is something else I can take? I was shopping on Friday and while the med was active I was like my old self. Energy to try on clothes and move through stores. When the pill wore off my head went tight instantly, the crowds bothered me, the lights were annoying, and I just wanted to go to bed. So we called it quits and I napped for a couple of hours. That type of on/off energy (almost like turning in and off a light switch) wouldn't work well for return to work. Sandi K.

Hi Daffodil and welcome to BTG. I love your name, 'Daffodil'. I don't have a shunt but just wanted to say that I agree with you about BTG cheering a person up. Even though we often share frightening experiences and are anxious about our feelings and what's happening to us it really makes a positive difference to come here and 'talk' with others who have been there. Sandi K. Xoxox

Carl, this is a great thread. You've got me thinking. Sandi K. Xoxoxo

Because I'm taking such a low dose to start I have to cut the pill in half with a knife. Even though there is a line running along the top of the pill it doesn't always break into nice even halves. Yesterday I took the smaller 'half' of a pill. It only lasted 3 hours and I was hit with a bit more than the usual fatigue symptoms afterward. Heavy legs and arms, tight head, and absolutely no motivation to do anything. I couldn't muster up the energy to do anything besides lie on the lounger outside in the sun. I don't think I was more tired than I would have been had I not started the meds. Without the meds I was hit with unpredictable amounts of fatigue at times. It's hard to know if I would have felt this way with and without the meds for sure. Today I woke up feeling ok, took the bigger 'half' and now have none of the fatigue symptoms. Sandi K.

It's week 2 now. Interestingly I noticed yesterday that my legs hurt in the morning. My legs always hurt when I'm tired, it's one of the 'weirdo' neurological symptoms I get when I'm fatigued. I took the ADHD med and as it was kicking in the leg pain went away. Later in the day when it was wearing off the leg pain returned. I read online that this med was initially developed as a decongestant. I think it works by removing the swelling in blood vessels. Sorry, I'm struggling for words here. The opposite of inflammation is what Im trying to say. When your vessels are swollen you feel stuffed up. When the swelling goes down your sinuses clear. That happens to me every time I take the pill. My sinuses clear. I'm wondering if the leg pain is also caused from swollen blood vessels? Will ask my GP next week. I definitely notice that I'm much more energetic and focused while the pills are in effect. During that 4 or 5 hours in the day I'm getting so much more done and feeling good. I realize that it's been over 2 years since I felt this way because I wasn't feeling well leading up to the brain bleed. During that 4 hours a day my head is clear and I'm motivated. It's still early days but so far so good. Sandi K.

Dawn and Mary I get that weird sensation too, everyday. As Jess says about her dizziness though, I'm getting used to it. It's not a dizzy feeling (I get that too sometimes) but a feeling like the object, room, planet are moving. Sometimes it's just an object like a piece of furniture out of place, sometimes I feel like the whole room moved. I fell down once when feeling like the room moved. It's very difficult to explain so I usually just say I'm dizzy as that's what most people understand. It's embarrassing when I go to put something on the table or counter and I misjudge where the surface is and either slam the plate down or let go too soon (did the table move?)! It happens more often if there is a pattern on the table top. Sandi K.

Karen thank you for merging the two threads. It will be easier for people searching for info to have it all in one place. Today will be day 4. So far it's been like this: Day 1 I felt 'high'. I felt GREAT! Which is probably not the best thing really. I mean, the idea is not to feel drugged up I would think. The world was a good place and everything 'red' in color popped out at me. I felt joy, energy, and danced around the kitchen listening to music. All was grand. Lots of energy and motivated. Day 2 the reds didn't pop out and the euphoria wasn't there. It was more normal. I had rehab for 2 hours which means 2 hours of concentrating so maybe that had something to do with it. I still found myself distracted though. I had to turn off the dryer so the noise wouldn't distract me. My attention was pulled away easily by a hummingbird at the window and my dog walking into the room. I did however feel energetic and able to organize. Day 3 was the best so far. I was able get through a list of stuff that would have taken me days before. I also spent a full 1.5 hours fully concentrating on a sit down task which is amazing. I didn't feel 'high', just more energy. After approximately 4 or 5 hours I feel the normal tiredness I've been feeling in my recovery. No extra fatigue from the extra things I've been doing with the 'synthetic' energy. Sandi K.

Michelle, it would have been very hard not to feel left behind after that conversation with your friend. When I was doing my return to work the last time around there were lots of changes happening. People retiring and peers being promoted in various departments. Many people I've worked with for years were moving up the ladder ahead of me. I knew I couldn't take on the extra responsibility, my health wasn't allowing me to do the job I had as it was. But I was sad that I wasn't keeping pace. I know that feeling of being left behind and it's not nice. Somehow we have to think about being on our own jouney and forget what's happening to everyone else. Somehow we have to stop comparing. Volunteering is great step toward going back to work. My rehab therapist explains that through volunteering (when I'm ready) I'll be able to start building up my hours ahead of doing paid work. It makes it easier for both an employer and I if I already know I can do a certain amount of hours a week. It will also help me figure out what type of work environment I need to be in so I can be most productive. I can also practice taking breaks so it becomes habit and not something I have to think about. It's a positive step Michelle! Sandi K. Xoxox

Great idea Carl! After receiving my reports it was months before I was able to start figuring them out. Google was my friend! I found it so helpful when trying to understand the medical terminolgy. Knowing where my bleed was and where the blood pooled helped explain to me why I have deficits now. There are some really good images of the brain on the Internet too. My neuropsych testing took a day and a half and I think 3 weeks for the results to be compiled. A 50 page report was put together. Again, very technical and difficult to read but the 1 hour debriefing session with the neuropsych explained it all. Awareness and validation go a long way to helping me feel better about myself. Reading and hearing about what happened to me and why I have trouble with certain stuff just makes me think 'oh that's why it doesn't work!'. Good luck Carl! Sandi K.

Karen, thank you for providing the link to the previous thread. That's who messaged me a year ago. and thank you for pointing out the rules so we don't forget. I want to clarify my intent for this thread for anyone reading it. I'm not recommending anything. There are all sorts of reasons a doctor wouldn't prescribe these meds to a patient. One example is amphetamines don't mix well with high blood pressure. Another is they can be habit forming. It really is necessary to follow your doctor's advice and work with your doctor when you try anything new. My intent is only to share my experience. Partly so I can re-read later to follow my progress, partly in hopes that if medical types are peeking in they will see what's happening with SAH recovery around the world, and partly so everyone else is aware of all avenues of help available (remembering that we are all individuals and shouldn't do anything without our doctor). I have similar concerns as Mary and GG. I'm stepping tentatively into this and I see my doctor again in 2 weeks. Sandi K.

I'm not sure if this is the right place to post this thread. I had a look at the 'advice' area but saw that it's meant for tips on natural things. Dear moderators, if this is in the wrong place I'm sorry for causing work. A year ago, maybe a bit longer, a Canadian BTG member sent me a pm suggesting I speak with my doctor about ADHD meds. She explained it was just about the best thing to happen for her recovery. It was too early in my recovery for that. I needed more time to see if my brain would bounce back on its own. I'm almost at 2 years post-SAH now (21 months) and my GP suggested trying ADHD medication to combat my fatigue and help me focus for longer periods of time without bringing on the neurological symptoms such as blurry vision, headache, sore arms and legs, hoarse voice, dizzyness and so on. GP explained there are 2 paths to ADHD meds. Ritalin and Amphetamines. Sounds scary. She explained there is no science to back up the choice to use these meds for brain injury and it would be trial and error to see if it works for me. She has prescribed a very low dosage of Dexedrine which is an amphetamine. Today will be day 3. The dosage is so low that the pill only lasts 4-5 hours. During that time so far, I feel energetic! What a strange but wonderful feeling! Suddenly I'm able to organize and get several tasks from my "to do" list done. I feel motivated and capable. When it wears off I go back to feeling how I normally do post-SAH, no worse. I wonder if that will continue, I wonder if I would feel more fatigued because I have energy to get more done? We will see, it's only day 3. Sandi K.