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PCS or permanent Brain Damage?
Hi... My name is Sara, I am 38... On August 7th, I went down an alpine slide ride, had severe whiplash and also tore up my knee on the same ride. I was feeling much better but went under general anesthesia to repair my knee on Sept 17th and have not been the same since. My major struggles are dizziness/nausea and sensitivity to fluorescent lighting. Going into a Target or Best Buy makes me feel sick. I also feel like I am always off balance. I have no cognitive deficits...just all physical. I used to be an exercise instructor and am an attorney. Based on what I am feeling and getting NO improvement from day to day, I am assuming the general anesthesia caused permanent brain damage. I am on 20 mg of Amitriptyline because I was having trouble sleeping. The Amitriptyline also keeps headaches at bay. Because of all the nausea and dizziness I have lost about 20 pounds in 3 months. I honestly can not imagine living "sick" like this for the rest of my life. Does the nausea and dizziness ever end? I am in complete despair and break down every day. Before this happened, I was never a crier. I hope there is someone out there who can give me hope :(
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I'm just a month more into mine. I don't really notice too much healing day in and day out. But when I look back at my journal it's only then that I can see how much I have improved.
Others here will likely tell you that you're very early into your healing process and full recovery is still a huge possibility for you. |
Sara,
Indeed as Chris said above: "Others here will likely tell you that you're very early into your healing process and full recovery is still a huge possibility for you." Be gentle, kind and patient with yourself. And avoid any others around you are perhaps not so. Hoping for you an excellent recovery. Theta |
Sara,
Welcome to NeuroTalk. Sorry to hear you got hurt on such a fun ride. You likely have PCS with chemo brain from the anesthesia on top. Your brain needs a good detoxifying. I have a nutrition and supplement regimen I recommend in the thread titles Vitamin Supplements. Some people are very sensitive to the anesthesia chemicals. You might contact the anesthesiologist and see if he/she has any tips for you. Otherwise, are you getting quiet rest? You concussed brain needs it. Please tell us about your daily routine so we can recommend how to improve it to get quiet rest. As others said, you are early in your recovery. Chemo brain from anesthesia can take quite some time. I am sensitive to anesthesia and took about a year to get my brain clear after having knee surgery in 1987. My biggest problem was balance when first standing up from sitting. I had to learn to get up slower. Have you tried consuming ginger to help with the nausea? It is a proven help. With your weight loss, you could munch on ginger snap cookies. You can also grind fresh ginger root at add it to juices. Hope this help. Please let us know how you are doing. My best to you. |
I am very thankful to hear some response. This is where things get confusing.... In early Oct. about 2 weeks post surgery is when I was diagnosed with PCS by my neurologist at the Mayo Clinic.... they then referred me to the Brain Rehab group at Mayo. This group consists of OT, PT, biofeedback (how does this compare to neurofeedback)...anyways.... AND I see a neuro-psychiatrist. They recommended slowly stepping back into life.... pushing myself on days I do not feel well and holding back on days I feel well. I never feel well so I have never had to "hold myself back".... but after spending some time on the boards I think maybe I have been doing too much. They said because I was so long post accident that "rest" was not recommended but more of a light schedule where I try to add more in.
My days are usually as follows.... get kids off to school (I have 2 kids ages 10/7)... come home and try to do some light picking up/laundry etc. During that time I usually get so dizzy that I have to lay back down. I also have been trying to walk a mile a day in the neighborhood. In addition, all my doc appointments are almost like a full time job in and of themselves.... and walking around Mayo is EXERCISE.... At 3 I pick kids up and try to help with dinner/homework routine.... I get nauseous just reading the homework at times. I usually fall into bed around 10 near tears that I live a life of being SO ILL. I cannot even describe how ill I feel throughout the day.... I feel like I am tipping to the left at all times and the dizziness and nausea are constant. I only have headaches on occasion. They are always on the top of my head and also cause nausea. I honestly did not know someone could be this sick and not dying. On the weekends, I try to attend my daughters indoor soccer games and I go to church. Other than that I usually have to lay down and rest. Could I be facing a life of this? I know everyone is saying I am very early on in my recovery but each day feels like a month. I would rather have headaches than nausea.... ironically the few times I get headaches I am ON balance.... I do not get it. So... in addition to Amitrip. 20 mg, I have been taking fish oil, Vit B, E, and D. I am in total despair and feel like my life is over.... also, people want to come visit and sometimes drop off food (which is nice) BUT that is exhausting as well.... sometimes it is hard to converse with people. My husband is wonderful but very frustrated with me.... says I need a better attitude :(. I keep telling him he has no idea what it is like to live this way. I have to be honest that I am at a low LOW. I can't imagine ever recovering OR living like THIS. I am so thankful to all of you and definitely need support and HELP. By the way.... the Mayo clinic has not been helpful at all. I know people think "oh the Mayo Clinic".... well... let me tell you, they know nothing about TBI :(... Dr Staab my Psychiatrist is a leading expert (I guess) on dizziness in the WORLD and has written some books but HE is the one who tells me to keep upping my Amitrip... which I refuse to do (I have enough issues without drug side effects)..... and he says nothing about the dizziness I have constantly,... except to have my husband shake his head back and forth then try to do something so he can see what it's like. Has anyone else just wanted to DIE they have felt so awful? If God held out his hand to me I would accept it in a heartbeat. I NEVER thought I could ever write something like that with 2 kids etc. BUT it is the truth :( |
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-tingly throbbing on the back/sides of my head when I concentrate too long -upper neck / lower scull pain -hyperacusis (tinnitus in ears / plugged ears) -sleep issues -sensitive to noise -anxiety and depression Sorry but it doesn't sound like my days are as difficult to get through as yourself. I go to work. Try not to overstimulate for extended periods. Try to eat healthy with supplements. Try to get extra sleep. I too have 2 kids (3/4 and 3.5)... although they make it very hard to rest, they ensure that I keep on the right track. The only thing getting me through this is some of the knowledge that I've gathered along the way that makes me realize that I will get better. And I now have a much brighter outlook on life, I'm more willing to take risks, and I want to change myself into a better person. I had a few lifestyle problems before my accident, but now I am using this horrible experience as a catalyst to work toward something that I never would have considered before. BTW if death really sounds like an easier way then you need to get professional help immediately. Depression was the hardest thing for me at the beginning, but when I found out that anxiety/depression are symptoms of PCS I realized that these thoughts in my brain were working against me and that I couldn't control them. I try to remind myself every now and then that it's probably not as bad as my brain is telling me it is. |
Hi Sara,
I can completely understand what you are going thru. As my signature line briefly explains, I had a concussion in the summer of 2009, wrenched my neck forward quite forcefully trying to do flips into a swimming pool and did some damage along the neck muscles. December of 2009 I had major surgery and was put under with general anesthesia. It was about 6 weeks after surgery that my head starting to feel dizzy, and I was having big time loss of cognitive ability, and the headaches. They were fierce, and usually worsened by physical activity. A couple of neurologists later I was eventually brought on Nortriptyline (100mg) to help calm me down as I was out right frantic as my original concussion symptoms were very short lived, about a week. I was scared and couldn't get an answer to what was going on. My current neurologist said I basically have a sensitive brain and with both the concussion and later anesthesia on top of a concussed brain, it was too much for my brain. Now, almost 3 years later, I've improved much. Huge compared to that point in time, however, I'm still left with lingering things like exertional migraines which I manage with doing what exercise I can and remaining below my known threshold which causes headaches. Sounds like the Amytriptyline is a good med but when I started at 20mg it didn't help. It wasn't till they found the the amount which started to both calm me and keep headaches absent. They are planning to lower the dose soon. I'm 48 YO male, average weight. Find quiet when you can, learn to meditate, sounds crazy but it teaches the brain to focus on nothing, which is what a brain needs, quiet. Tell your hubby that this is a real injury, and search youTube for the videos titled: "You Look Great!" : Inside a TBI Have him watch them. Yes, get on a healthy nutrition and vitamin plan, the brain needs all the help it can get during this rough time. FYI - I'm now able to function well enought for work, well enough to now drive on the freeway during rush hour and take difficult courses online. As my first neurologist told me, "your brain is rebooting and it's going to take time." |
Sarah,
I'm sorry you are feeling so terrible. And yes, others have felt that they wanted to die, so you are not a freak. This is a very isolating illness. I recently saw the movie "I am" and the director had PCS and said that for the first couple of months he wanted to die-but then 6 months in it the PCS magically cleared up one day. Some people do have that experience; for me it has been a gradual recovery over 2.5 years. For me I found taking things one day at a time, meditating and doing less have been helpful. I find when I do things like church or indoor soccer, I feel much worse. A trip to the mall with my pre-teen daughter can wipe me out. Now I am much better then I was initially but I still have to plan for events like a trip to the mall. In fact, I have just asked a friend, who has been volunteering to help, to take my daughter to buy a dress. In terms of socializing, I can sometimes do one on one talking with a friend, but other times it is just too much effort. Please kee[ posting, we are here for you!! Concussed lawyer |
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Oh and after you do recover, please post a comment on this forum. Too many people just leave this forum after they've healed because they no longer need advice. |
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Hey Sarah,
Here's my story. In June of 2010 I was on vacation surfing with my kids at a beach in North Carolina and rode a wave into the shore and ended up smacking my nose on my son's surf board. I was 49 at the time, I knew it hurt and was a little dizzy but did not lose consciousness. I was more concerned about getting to a plastic surgeon to stitch up my face! I figured being a middled aged gal I could use the help! I didn't realize I had a concussion for several days and actually got bad advice from my family doc that I didn't have a concussion because I didn't lose consciousness! (Unbelievable). I ended up taking a week off work then going back to work in a semi-dazed state and actually took 4 cross country business trips. This ended up making me very, very sick. I finally found a good neurologist, was diagnosed with PCS, started a course of steriods and Amptriptylin (eventually 60 mg) and took 6 weeks off work. I should have taken more time off. I continue to improve-two steps forward one step back. Yes, for me PCS has been life altering and it took me a long time to wrap my head around that. Now I work on a reduced schedule, limit the lights and noise etc. But there are many improvements. For the first year I couldn't go to movies without intense pain, now I can. I can now use the computer for longer and watch tv. I still have a very hard time with noisy resturants and I can't go listen to music. I remind myself that what I have is not fatal. I've had friends with breast cancer etc. I know it is hard to put yourself first when the kids needs are so real, but see if you can set some limits that will speed your recovery. I need to run now, but I am happy to keep the dialog going. All my best Concussed lawyer |
From reading your posts you may very well be overdoing it. Pushing yourself is not good IMO. The neurologist I see recommended this which ended in a ER visit and one angry ER doctor. ER doctor told me my return to work was too early and was not happy with the nuero. BTW early in my recovery my employer pushed very aggressively to keep me at work. That ended with two ER visits and a three day hospital stay.
How is your safety net? Can your family and or friends help? While food is nice what you need is help with the running around, cleaning... Also trying to manage all the health care is too stressful. One thing I feel helped me most was the two months straight of my just seating in a recliner looking out my back window ALL DAY LONG. So lots of very low stimulation and no physical activity. Either my wife or father in law drove me around and was present for all visits. Even then there were times I was on the verge of breaking down. It is not uncommon to have a psychiatrist on your health care team for PCS. It is your brain that is injured and yet we try to rationalize with said injured organ. It is like running a marathon on a broken leg. Not a good idea. Hope you feel better soon:grouphug: We know and feel your pain:hug: |
Sara,
I believe one of the worst things someone with PCS can do is try to compare themselves with others or try to collect time lines of others recovery. As the saying goes, If you have seen one brain injury, you have seen ONE brain injury. Every brain injury is different. The only things that are the same are the needs for proper nutrition, quiet rest, and avoiding stress and over-stimulation. Recovery may take 6 weeks, 6 months or 3 years with what appears to be the exact same brain injury. Anxiety and stress are the worst things for brain recovery. You have not yet replied with your daily activity regimen. You may be doing too much. Women often struggle to recover because they have so many social contacts they are trying to maintain and other duties and activities they feel they must complete. The quiet rest is the most important issue to consider. Plus, there is no way to look at recovery from a day to day perspective. Recovery is better looked at as week to week trends. It is important to look back at activities the days before a bad day. One might get busy because they are having a good day and then the next day, they wake up a zombie. Relapse is almost always delayed by a day or so. Are you consuming caffeine, alcohol, MSG, diet sweeteners, ,etc? Taking any other stimulants like energy drinks, etc. These are all small parts of the big picture. And like I asked previously, what is your daily activity list like? We can help you with sound advice. Comparing yourself to others recovery is not sound. PCS Mikey took 3 years to recover to a functional level. I have never recovered the critical functions to live a normal life even after 12 years. My case may be extreme but I have learned tons over the past 40 years as I built up a history of head impacts. I can chart the recover from each and the functions that returned to less than full levels after each head injury. My best to you. |
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I am very thankful to hear some response. This is where things get confusing.... In early Oct. about 2 weeks post surgery is when I was diagnosed with PCS by my neurologist at the Mayo Clinic.... they then referred me to the Brain Rehab group at Mayo. This group consists of OT, PT, biofeedback (how does this compare to neurofeedback)...anyways.... AND I see a neuro-psychiatrist. They recommended slowly stepping back into life.... pushing myself on days I do not feel well and holding back on days I feel well. I never feel well so I have never had to "hold myself back".... but after spending some time on the boards I think maybe I have been doing too much. They said because I was so long post accident that "rest" was not recommended but more of a light schedule where I try to add more in. My days are usually as follows.... get kids off to school (I have 2 kids ages 10/7)... come home and try to do some light picking up/laundry etc. During that time I usually get so dizzy that I have to lay back down. I also have been trying to walk a mile a day in the neighborhood. In addition, all my doc appointments are almost like a full time job in and of themselves.... and walking around Mayo is EXERCISE.... At 3 I pick kids up and try to help with dinner/homework routine.... I get nauseous just reading the homework at times. I usually fall into bed around 10 near tears that I live a life of being SO ILL. I cannot even describe how ill I feel throughout the day.... I feel like I am tipping to the left at all times and the dizziness and nausea are constant. I only have headaches on occasion. They are always on the top of my head and also cause nausea. I honestly did not know someone could be this sick and not dying. On the weekends, I try to attend my daughters indoor soccer games and I go to church. Other than that I usually have to lay down and rest. Could I be facing a life of this? I know everyone is saying I am very early on in my recovery but each day feels like a month. I would rather have headaches than nausea.... ironically the few times I get headaches I am ON balance.... I do not get it. So... in addition to Amitrip. 20 mg, I have been taking fish oil, Vit B, E, and D. I am in total despair and feel like my life is over.... also, people want to come visit and sometimes drop off food (which is nice) BUT that is exhausting as well.... sometimes it is hard to converse with people. My husband is wonderful but very frustrated with me.... says I need a better attitude . I keep telling him he has no idea what it is like to live this way. I have to be honest that I am at a low LOW. I can't imagine ever recovering OR living like THIS. I am so thankful to all of you and definitely need support and HELP. By the way.... the Mayo clinic has not been helpful at all. I know people think "oh the Mayo Clinic".... well... let me tell you, they know nothing about TBI ... Dr Staab my Psychiatrist is a leading expert (I guess) on dizziness in the WORLD and has written some books but HE is the one who tells me to keep upping my Amitrip... which I refuse to do (I have enough issues without drug side effects)..... and he says nothing about the dizziness I have constantly,... except to have my husband shake his head back and forth then try to do something so he can see what it's like. Has anyone else just wanted to DIE they have felt so awful? If God held out his hand to me I would accept it in a heartbeat. I NEVER thought I could ever write something like that with 2 kids etc. BUT it is the truth |
Sara,
Thanks for your complete status. It helps. First, I recommend you watch with your husband, the 6 segment YouTube called "You Look Great." It is at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be It takes about an hour so you may need to spread it over a few sessions. It will be good for your husband to see it all. There is also a TBI Survivors Guide at www.tbiguide.com. It is 84 pages that you can print out. Read it as you have energy and highlight the issues that apply to you. I am not impressed with the online information about concussion that the Mayo clinic publishes. Very out of date. They tell you to "pushing myself on days I do not feel well and holding back on days I feel well." I and others wholeheartedly disagree. Dr Robert Cantu, one of the most respected neuros regarding concussions suggests quiet rest. That does not mean napping or such but instead a moderated day of low stress activities with just enough stimulation to keep a good blood flow in your brain. Trying to help with homework may be too much, especially late in the day. I tried the OT, and PT route at a neuro rehab facility and found it counter-productive. It is great for those who have been in a coma and such but not so good for those of us with PCS. Often, those recovering from a severe TBI with coma are trying to recover to a level similar to our PCS condition. I think they are looking for insurance billings more than patient improvement. The most important issue in my experience is for you to learn what works to allow you to make it through the day. The constant challenges from the Mayo people is just stirring your brain up. Keep in mind that when friends stop by, they need to understand your limits with conversations. Only one visitor at a time or if there are more, only one can talk. Making the brain switch between different peoples comments can be too stressful. If they talk over each other, it is disastrous. When I go to church, I can not go to service, just Sunday school. The sounds in the sanctuary are too much for my brain, too many echoes and too much sound volume. The concussed brain will hear echoes that very few people ever hear. It will also try to hear each individual voice around you during singing or responsive speaking. If I do go into service, I have to be wearing my foam ear plugs to reduce the sound. At your stage, I highly suggest using foam ear plugs when you are out in noisy areas. I bet the mall and Christmas shopping will be a stressful and challenging event for you this year. Grocery stores are usually more peaceful late at night. Avoid them on weekends. Noise in your home can be a problem just like too much visual stimulation from a TV constantly on or walls covered with pictures. Try to find a visually quiet place at home to do simple activities. Sewing, knitting, crocheting, arts and crafts and such that are manually oriented can be good stimulation without being stressful. The hands can not go faster than the concussed brain can tolerate, Peaceful melodic music is good for the brain. Hopefully, you can find some music that settles your brain so you can just 'coast' as you listen to it. Have you had your ears examined by an ENT or audiologist who works with balance issues? Sometimes there is a need for some Epley Maneuver treatments, especially if you feel like you are leaning to one side. Have to tried ginger yet? Ginger Snap cookies are the easy way or you can buy ginger tea or natural flavored ginger ale or ginger in capsule form. This should give you a good start. Please remember to have your husband watch the YouTube. It will open his eyes to what you are going through. If you ever feel like you want to comment to me privately, use the Private Message or Email link that drops down under my screen name when you left click on it. If you use the Post Reply button to the bottom left of posts, it will not quote the previous post. Hope you have a good day. For those interested in knowing what an Alpine Slide is, here is a link to an article about the Timber Twister and Alpine Slide. Looks like the Lutsen Mtn Alpine Slide is a wild and fast track. http://minnesota.publicradio.org/col...ne-slide.shtml My best to you. |
Hi,
I would like to add here if I may. I, for one, agree, with Mark on the 6 segment YouTube called "You Look Great." Nicely put together, and worth the look, listen and family watch. I also do not agree with Mayo's approach on pushing it. Its your body and brain - listen to it - do not overdo. I do not have the contracts for the child care, but over the past 2 1/2 years from my injury I had the contracts with self to deal with patient care, obligations for family responsibility to provide for them, and work, and provide for my supervising physician's patients' care in a hospital setting, both in the hospital rounding setting and in the surgical suite - surgical assisting. Pushing became a literal nightmare and symptoms became so bad that I was forced by my own responsibility to pull out of settings and limit myself to the point of being worthless to the patients, the physicians and the employing hospital - needless to say I was terminated. My Neurologist upped my meds repeatedly to no avail, and eventually, when out of work, and finally settling into not working and actually RESTING, new meds began working when we found the right dosing - headaches (daily) resolved to a much more tolerable level, other symptoms settled into a more tolerable level, only few cognitives remain and are being addressed. Please, continue your vitamin , mineral, herbal regimens; listen to your body; REST; back off to the point that your body is satisfied - even if its cutting back on what you are doing by greater than 50%. Find that restful music, that restful state, and let yourself have that time to begin the real healing process.............it will mean that your docs will have to listen to your schedule, that you set, including resetting your therapy schedule.........they don't get to push you, you set the pace. Be Good to yourself, and give your body the time it wants for healing. |
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Sara...
I can COMPLETELY identify with everything you are feeling. I am a 33yo mother of 3 kiddos 3, 5, and 6yo. As mothers we have no choice but to push through. Especially when there a low support system. June 26, 2012 is when I was at a red light and rear ended due to him not even seeing the intersection and hitting me at 50mph... I was looking over right shoulder into back seat upon impact. Diagnosed as whiplash...blah blah.. Close to 5 months later...I am not doing well at all. I have lost 18 lbs due to absolutely NO interest in food. My BA is in health and wellness and pre kids was a fitness instructor/trainer. I know how important it is to eat and I LOVE food... but the thought turns me off... Late in evening I have moments where I can eat...and choose something high fat (like ben and jerry's, hehe) to maintain. As I sit here typing this to you... the nausea is building..the head pressure is setting in and my ears are plugged adn aching... My headache is coming on.....on the really bad days..its all over head, all day.. Good days..just stays in right temple. My 3 yo keeps asking for snacks....and its is really setting me off...causing me ridiculous anxiety! All symptoms are hitting me hard right now. I wake up pretty decent in the morning...and have small windows of "feeling good".... As day progress and with certain stimulaiton or stress...I get hit hard with all the icky stuff. Ugh...I am super nauseated just thinking about it. I am so thankful to have found this group...and also the amazing PCS group on facebook. Are you a part of the group? Are you on FB? I can send you an invite if your not apart of it yet. (or anyone else interested). Feel free to email me. Its nice to be able to connect with others...to feel less alone and less crazy. big hugs to you! Sabrina Maine Mamarazzi |
Dear Sara,
Wow you are blessed here with so much help! People have taken a real liking to you. I am pleased we can all help each other. Firstly I feel for you I really do. I am so sorry you have been so "Low"! It must be awful for you to try and get your head around a whole new life pattern when you are clearly a talented woman in your own right. When I first came on this site I was told "recovery needs patience". The word patience conjours up horrible visions for me of waiting at the end of the queue for dinner in junior school when I'm hungry. No one likes to wait for something they need. You will be fine. You will!! You are alive, you are being a mum, you are a wife, you can see, you can type. But - You have lost an incredible amount, I can see that. I am so sorry for your loss. However you are the only one who can decide how you will choose to go on. You cannot go on for anyone else, not even for your two children. You must choose to go on for you. When someone gets cancer and they are having chemotherapy and their hair falls out, they get support, understanding and love. You have an invisible horrendous disorder. Do not underestimate how terrible this is to live with. But being invisible means you will not get support, understanding and love. This is your battle. You have this web site, you have the love of your husband and your children, but you must devise a plan in your mind and the plan must be this : I DO NOT KNOW WHAT TOMORROW HOLDS, I DO KNOW I GOT THROUGH TODAY AND I CHOOSE TO SURVIVE TOMORROW. I ACCEPT THIS IS MY NEW WAY OF LIFE FROM TODAY ONWARDS AND IT WILL GET EASIER. I did not say it will get better, because you do not know what tomorrow holds. It will and does get easier. Tell your husband that you are a hard working mother and he must accept that when you say you need quiet rest or time you MEAN it! Lots of love to you, keep in touch and good luck. |
Thankful
I am so thankful for all of your thoughts and uplifting words. It is so good to have all of you out there who KNOW what this is like! In a split second your life changes and it is devastating. Today I managed to go outside for a short time and put tree tops in my front pot..... amazing how in the past that would not be something I even thought twice about, and now it was an exhausting endeavor!!
I spent time at Mayo clinic again on Friday and met with someone I actually connected with.... and who was very understanding and had some good advice about how to structure my days. She was an OT who has been in the Brain Rehab group for over 20 years. I would love to hear more about each of you and look forward to connecting on a regular basis.... XOXO.... Have a great Sunday everyone! |
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