Sandi K Posted April 28, 2012 Posted April 28, 2012 Yesterday I walked 20 minutes and today I walked 25 minutes despite having sore legs. Yesterday afternoon I was almost dragging my feet through the store we went to later in the afternoon. It's mid day here now and after my walk I also cleaned three bathrooms and now have a load of errands to run this afternoon. My head is a bit tight but not too bad, legs are no more sore than before. Definitely felt the 'feel good' hormones while I was walking. Sandi K. Quote
janicegrewe Posted April 28, 2012 Posted April 28, 2012 hi,i have been functioning in a fog with out much focus,talked to my primary care dr. she said i have "post trumactic brain injury syndrome" , she is treating me for this grante more meds,but i now feel amazing,lots of energy,more focus,no more mindless eating, enjoying things that i liked to do in the past but once the brain bleed happened i lost the interest,i now enjoy again!........it is so much better for me now.jan grewe Quote
Sandi K Posted April 29, 2012 Posted April 29, 2012 Very interesting, I'd never heard 'post traumatic brain injury syndrome' before so I'm googling. Thank you! Sandi K. Quote
janicegrewe Posted April 29, 2012 Posted April 29, 2012 i never had either,but what ever,since ihave been on this med,things are a lot clearer and the big thing i "feel" better!!!janp.s. i did not even bother to google it,that is the name she told me,so far it sure is doing a good thing!! Quote
janicegrewe Posted April 29, 2012 Posted April 29, 2012 yes, i just googled it too,and it pretty much summed my behavior up!!jan Quote
amexdm Posted April 29, 2012 Posted April 29, 2012 Hello, Is there a medication that you say has helped you with your fatigue Janice? Sure would like to know what it is. been in bed all weekend with fatigue and my feet feel like bones. Hope to back contributing next week. David Quote
janicegrewe Posted April 29, 2012 Posted April 29, 2012 hi david,i have no idea if what was perscibed for me would work for you,but talk to your primary care dr. and see what they say. i am on a generic drug for wellbutrin, which is an anti depressant, she felt that this would work for me ,since it has fewer side effects than other medicines,and if iam depress(anything is possible,but iam an optimistic person usually)and it was causing all these issues,well then atleast i am feeling and doing much bettter.she felt it would work connecting the nuerons,kind of like dot to dot,and she also said it would be a couple weeks for it to do the most good!i was not so tired that i would stay in bed,but i certainly did not have the energy i used to have.when i googled "post trumatic brain injury sydrome",it had all of my issues! i knew things were not right,and i was tired of being like that!i am so glad she is the type of dr. that listens!!and researches answers for me!!i was concerned about dementia,so i had to do an evaluation,which i did great on,so far i do not have to worry about that.i certainly hope this helps you,i really dislike the fog that i felt i was in all day,my focus was really bad.now it is way better.good luck,jan Quote
janicegrewe Posted April 29, 2012 Posted April 29, 2012 david, i just realized that you are in royal oak!!i was at royal oak baumont. granted i live about an hour from there,but it seems like you are just around the corner!good luck with your recovery!i go to dr.friedman in bigham farms,i really like him,but he told me that i did not have to see him for a year,which will make it next march.jan Quote
MaryB Posted April 29, 2012 Posted April 29, 2012 Here I go beating my dead fibromylsia horse again but............ the drugs used to treat that disease are some of the same for PTSD ( which is common in SAH patients or anyone that has gone through a life threating situation) and fatigue, depression, sore muscles. Cymbalta also treats diabetic and just general neuropathy ( which I had a really bad problem prior to going on Cymbalta). I have been on Elevil, Lexapro, Gabepentin and now Cymbalta. I love my Cymbalta. It kind of takes care of many of the issues but I am suppose to be double my dose and I have not yet done that. I will repeat myself this class of drugs are what my neurologist would of put me on if I were not already on them. SO now I want everyone to run to your physican and ask for some kind of anti depressant even if you don't think your depressed it helps with your serotonin in your brain. Duloxetine (Cymbalta) is used to treat depression and generalized anxiety disorder (GAD; excessive worry and tension that disrupts daily life and lasts for 6 months or longer). Duloxetine is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes) and fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Duloxetine is also used to treat ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time). Duloxetine is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amounts of serotonin and norepinephrine, natural substances in the brain that help maintain mental balance and stop the movement of pain signals in the brain. Quote
Sandi K Posted April 29, 2012 Posted April 29, 2012 (edited) Lots of great information on this thread. Mary, I'm wondering how long you've been taking it if you don't mind telling us? I've been googling Post Traumatic Brain Injury Syndrome and it's different than PTSD. The Brain Injury Network (BIN) in the US has a good website and they are wanting our symptoms to be recognized under the umbrella name of PTBIS. I hope I've got all that right. I think it's great that the doctor in Michigan is using the term. It would certainly help with things like after care, medical benefits, studies, and funding if there were a name for the weirdo symptoms some of us experience temporarily or long term. I'm pretty sure my GP hasn't heard the acronym or the syndrome so I don't think the info has made it to Canada yet. I will talk to her about it though once we rule everything else out that might be causing my fatigue. I walked 30 minutes today and done some light housework. Rest of day has been resting for tomorrows work day. Sandi K. Edited April 29, 2012 by Sandi K Quote
janicegrewe Posted April 29, 2012 Posted April 29, 2012 yes maryb ,my dr told me that most people who have had a brain injury or stoke usually suffers some type of depression,so yes i hope every checks withtheir drs. hopefully the drs. can help!!jan Quote
MaryB Posted April 29, 2012 Posted April 29, 2012 (edited) Michelle, (HAHAHAAHa- I mean Sandy!) A couple of years. I was first diagnoised with Fibro about 16 years ago, although I suffered and Dr.s just thougth it was all in my head for YEARS!!!!!!!!!. One of the worst problems aside from pain and feeling awful was the bottom of my feet hurt so bad to walk in the morning I could barely walk it was like someone beat htem all night with a rod.. Anyway....I have gone through many assorted meds usually an anti depressant and something for sleep. When I saw Neurolgist one day he said he woudl like to put me on Gabepentin but I said ( as he did not look at my chart) already on Cymbalta and I did not do well on Gabepentin. Rainign cats and dogs... I am soaked.........I just got back from work AGAIN!!!!!!!! and I need to bath so I can watch my show soon. The Good Wife and Mad Men Sandy have you or I gotten anything done today? http://www.doctoroz.com/videos/fibromyalgia-real-illness-pt-2 Edited April 30, 2012 by MaryB Quote
mshawx_head Posted May 3, 2012 Author Posted May 3, 2012 Hi everyone! I've commented before about my confusion regarding exercise. When in the Pitt of fatigue is it good to push through and exercise anyway or does it only serve to knock you down further? I miss my workouts. In the last couple of months I've really squeezed all activity besides work out of my life because I just have no energy. My GP brought it up during my check up appt today. She explained that no matter what, in her opinion I need 30 minutes of exercise every day. She said it keeps the seratonin levels up and keeps the blood flowing. By limiting myself to work activity only I'm mentally fatigued and she said I need to balance it out with physical fatigue and overall I will feel better. She said there are loads of studies that prove it. She wants me to start immediately despite me feeling exhausted right now. There is other stuff we are looking at regarding my fatigue and she doesn't blame my fatigue on not exercising but she insists it will help. So I walked 20 minutes today as a start. Sandi K. This is really interesting. Over the last few weeks my work commitments have increased and I have not done the exercise I had been doing. I'm feeling increasingly fatigued - and exactly as suggested by Sandi K's posting, I feel like my mental fatigue isn't balanced by equivalent physical fatigue - and I feel grotty ! I'm trying to take a strong hold of myself and force myself back to getting that exercise in, so I can manage this fatigue better. Inevtably doing somne exercise means that I give my head a break, and stop pushing myself to keep on at it, work wise. Which can only be good. Don't know about anyone else reading this, but I have noticed that increased fatigue also results in more negative feelings and too many questions about whether I am coping, whether I'll be able to cope more (or less) in the furure and just really putting lots of stuff about my capability into question, which erodes my confidence about planning for the future - especially from a work perspective - and I find myself less willing to commit because I'm afraid I won't be able to do stuff in time, or completely enough, etc Damn the fatigue !!! Mags Quote
janicegrewe Posted May 3, 2012 Posted May 3, 2012 i am amazed that you people are so energetic so quickly!!i do walk a mile a day and do zumba,we live on a farm and i have 2 horses to feed and clean dailey, but the first year or two after my brain bleed i did not do anything and my family pushed me to keep going.i am glad i did,i feel much more in control of things,i still get tired, but nothing like before!it has been 2 1/2 years since my brain bleed.good luck ,keep going!jan,the new meds have helped to get rid of the foggy feeling! Quote
Epaul1967 Posted May 4, 2012 Posted May 4, 2012 What a blessing to find this Thread. I've been in the dark since mine happened, but this has really helped me. Everything sounds the same..... I was in the middle of a 30 mile bike ride and the pain came out of nowhere. I kept riding because I was scared I would pass out if I stopped. I rode 3 more miles till my girl friends house. She called 911 and off to the ER I went. The first CT showed the SAH. I was sent to a bigger hospitals ICU. Tomorrow will be 1 month. The MRI and Angiogram were clear. Other than being a little wobbly now and then......and a slight headache once in a while I feel normal. I was cleared to return to work next week. I've did a little walking a few times but haven't even thought about riding again. The memory of what happened is to fresh. I guess inside I'm scared of it happening all over again. Quote
AnnieT Posted May 6, 2012 Posted May 6, 2012 EPaul1967 Totally get your anxieties - I was circuit training when I had my SAH on January 5th 2012. Went back to my first circuit training session 3 weeks ago. Was I anxious? A little. But I know that it was unfounded anxiety as I had no aneurism and non known cause for my SAH. Feel so much better getting back into exercise (especially as I have put on around half a stone since coming out of hospital!). It takes time though and it is so tiring - but you know as I do that tired feeling after exercise is a good tired feeling and makes you feel good about yourself. Go for it - just don't expect the same levels of fitness as you had pre-SAH to come back straight away. I think it's probably going to take me a while to be as fit as I was. But hey, life could be worse?! Take it easy Annie Quote
Epaul1967 Posted May 6, 2012 Posted May 6, 2012 Annie.... Do you have any headaches or the foggy feeling? Some times I feel perfect, but 3 hrs later I might have a headache or have the concussion feelings. One day I can eat anything and the next everything makes me nauseated. I'm not on any meds. Ep Quote
kpaggett Posted May 6, 2012 Posted May 6, 2012 Hi Mags,Two things to read if you haven't already are a letter from your brain and the spoon theory. Of course there is all the great Recovery Advice and other information on SAH available at the Southampton site. One site that I found very useful for getting to know the new version of my brain is the Traumatic Brain Injury Guide. While I don't technically have a traumatic brain injury, I do have an acquired brain injury. Thanks so much for the reading suggestions, they really helped. ~Kris Quote
kpaggett Posted May 6, 2012 Posted May 6, 2012 Sorry that last quote thing didn't work right, but o'well Hey, for all of you that were really active before and yet had a large devastating SAH...that was me. I really overdid things for about 6months post SAH (under the guidance of a physical therapist, I might add). Then I realized that slow and steady wins the race. I'm not jumping around the room, biking all day, or working out on the machines anymore. It's OK to take it slow and learn that exercise can be different yet effective in a new way. I love my Yoga class, now and am really good at it...one thing that really can boost my overall self-concept too. If you were like me, learn to take it way slower than you even thought possible and then you'll notice the well-being that comes with being fit again. Patience is where it's at, Kris Quote
AnnieT Posted May 7, 2012 Posted May 7, 2012 Hiya Ep Yep I do still get headaches but not too often. And the grogginess has stayed, especially if I have too much or too little sleep. My specialist nurse said to expect it to take around a year before I'm feeling 'normal' again. You are very soon after your SAH - I am around 4 months post SAH so probably a little more able to do stuff than you are at the moment. I am rubbish at following my own advice, but if you don't feel like doing anything, don't do it as you will suffer with real tiredness if you push yourself. As for the food thing, I haven't really noticed any major changes regarding what I do and don't like, but I know some people do. Best wishes - hang in there I'm sure you will start to feel better soon. Annie Quote
Guest Posted May 7, 2012 Posted May 7, 2012 I'm four months out from my NA-SAH and I can't tell that it's even happened - very surreal. It didn't seem that way starting out, but around 6-8 weeks out, I seemed to recover very rapidly and shortly after that, I would say that I was fully recovered. I am back to most activities that I used to partake in, with the exception of returning to the gym. My only restriction is no heavy weightlifting for one year. I don't normally lift heavy weights, I do light weights or circuit training. I am finishing off a month of cancer treatments today and tomorrow. I have not suffered the radiation fatigue that is a common side effect. I try to maintain at least 30 minutes minimum exercise per day which is usually walking or walk/run on treatment days, then 15 km bike rides at home on the weekends. I have done two 8 km hikes, one which was fairly steep and challenging. I notice that my cardio could stand to improve. In all fairness to those that have had to return to work full time or part time, I have not done that yet, due to my cancer treatment. I will rest up and recover from the skin damage, then ease back to work in June. I credit my recovery from both illnesses to my positive attitude and I never believed for a moment that I wouldn't recover fully 100%. The weather here on the west coast of Canada has finally taken a turn for the better. I must don my warrior gear and get out there to seize the day, radiation zaps and all. Hang in there everyone... the mind is a powerful tool for recovery. Sue X Quote
kpaggett Posted May 7, 2012 Posted May 7, 2012 Happy for you, Sue! I'm not sure I'll recover !00% though. I was told yes, but I'm 8 months and so far...no. This depresses the heck out of me. I wish I knew what I am striving for because if it's not 100% then I don't even know what it is. Because I'm not back to normal, I morn the loss all day long repeatedly because everything I do (since I do it differently) is there as a reminder that I'm not the old me. I so wish I was like you. I wish I knew what a reasonable goal for me was. I wish I was better at handling this. I see a neuropsycologist this week...maybe he'll help? ~Kri ______s Quote
Guest Posted May 8, 2012 Posted May 8, 2012 Happy for you, Sue! I'm not sure I'll recover !00% though. I was told yes, but I'm 8 months and so far...no. This depresses the heck out of me. I wish I knew what I am striving for because if it's not 100% then I don't even know what it is. Because I'm not back to normal, I morn the loss all day long repeatedly because everything I do (since I do it differently) is there as a reminder that I'm not the old me. I so wish I was like you. I wish I knew what a reasonable goal for me was. I wish I was better at handling this. I see a neuropsycologist this week...maybe he'll help?~Kri ______s Don't get discouraged Kris, everyone is on their own healing path. I was scared and discouraged initially, but with the support of my family, friends and co-workers, I pulled through and out the other side. You'll get there. Counseling helps and keeping positive goes a long way. Normal? I'm back, but with a different perspective on life. Sue X Quote
amexdm Posted May 8, 2012 Posted May 8, 2012 Hello, I'll have to start my own thread. FAT and active people who have had an SAH. I am active but a little overweight and being fatigued all the time certainly doesnt help. All I can do is work and go home and die in my bed. I hope someday to be better. Until then, keeping my job and income will be most important. Kris, let us know how the neuro psych went I am considering going myself. Thanks, David Quote
Winb143 Posted May 8, 2012 Posted May 8, 2012 (edited) Kris, You can get thru this..never give up....when down...sing or do whatever makes you happy (in my case I sing) ...whatever makes you happy then do it Blow what anyone else thinks....while you are getting better...you need to be happy....even if you go for coffee .. You can do it Kris.....keep going onwards Kris......I have faith in you xx We are all survivors...Yeahhh and we can remain that way x. Now Smile even when down if poss ...anything is possible...passing faith over to Kris xx Joining Davids slimming club 1st member is free??? Love WinB143 xx Edited May 8, 2012 by Winb143 Quote
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