:(
 

Hi PCS Friends....

I have been off of here for about a month.... trying to avoid computers etc. I am now at 6 months of PCS without a moment of feeling normal. I am still constantly dizzy, have nausea that a sea-man has probably never experienced, and the worst is the feeling of being off balance and the need to correct my gait. I am miserable. I am worried because when I read other posts they talk about feeling normal until they do too much etc. I never feel normal.... even when I am sitting perfectly still I have the nausea. I will be seeing a new Doc. at HCMC in Minneapolis on Feb. 5th. Praying they may have some words of wisdom for me. I was on here today just reading some of the new posts/members. For those of you who do not know me I got whiplash on an alpine slide on August 7th, 2012 (also tore up my knee on same ride)..... I used to be a spinning instructor and am an attorney. Praying some of you may be recovering....

If it gives you any hope.... I'm at just about 7 months and I didn't have any "normal" moments either until around the 6 month mark. You can and will still improve! I don't have a lot of normal moments but its a step in the right direction!!

I haven't had the nausea for a while though but my dizziness is still one of my biggest complaints. Have you tried ginger or gravol or ginger gravol for the nausea? Supposedly works well for dizziness too. I've been meaning to pick up some ginger gravol to try. Normal gravol makes me sleep for like 24 hours straight!

How are you spending your day? Are you working? Perhaps you're doing too much all the time and haven't got to the point of some times of normal.

I know for me I can feel ok until I do too much but doing too much is basically doing anything i.e. shower, make dinner, make a phone call etc.

I hope you get some answers at your appt in February! Is it with a neurologist?

I hope tomorrow is a better day for you.

CC

Cycle Crash...
How do you spend your days.... can you give me a "basic day" for you? I probably am trying to do too much. I have two kids and have to keep moving for them (doing homework, picking them up from school.... and I often attend their events... basketball, soccer).

Hoping I can look at how you structure a day and get some ideas. I am honestly miserable and pray to die..... even though I am a person who loves life and loves her family more than anything. I frankly did not know a person could feel this horrible without being in the process of dying. I am seeing a Brain Rehab group in Minneapolis which consists of a team... neurologists, OT, PT etc.

The only thing that I have gotten back so to speak is sleep.... I am now sleeping well after suffering from insomnia around month 3/4.

It is good to hear you are seeing improvements....do you work/work out etc. yet.?

See there's my point exactly! You are doing way more than I am, perhaps out of necessity, but if I was doing those things I know I would lose any good moments I've had. My son is 18 (I'm 39) and so I do not have any young kids to take care of. My heart goes out to all you parents with young ones out there. I don't know how you do it!

I haven't been able to drive since the accident because of dizziness and blurred vision. My cognitive problems, concentration, memory etc, would make it unsafe also.
I haven't been able to work (accounting) in 7 months either.

My day consists of eating, an hour or so on the computer looking at the news headlines online and reading this forum, paying bills, lumosity, etc. ,doing the dishes, 15 minute stationary bike ride, 20 minutes of meditating, 2-3 hours of tv spread out over the whole day (only certain shows), sometimes a brief nap, and that leaves a couple hours for "jobs" for the day but only if I'm having a good day.

I can only do so much in a day so jobs that take my limited resources are: showering, making dinner (this can take 2-3 hours), mental tasks (forms, etc), doctors appts, groceries, laundry, phone conversations, etc. I can usually only choose 2 of these max in a day and have to plan accordingly.

I cannot have any noise in the house so unless I'm watching tv or talking to my family it is totally quiet. No radio or tv on for background noise. I think this is the most helpful.

I am desperately trying to get back to working, running, visiting with friends and just living so for now I'm trying not to do anything that makes my symptoms worse. Pretty much everything makes my symptoms worse! But I can finally say that I sometimes have moments that are pretty much symptom free if I've been not overdoing it.

Does that help at all or make things worse? I'm just trying to figure out how to add things back in slowly without getting back to square one. Its tough. Do you have a psychologist in your fabulous sounding medical team? They might help you not feel so mentally overwhelmed.

I hope you find some relief somehow. Perhaps just venting to us will help!

CC

You sound like me...and how I was a while ago. I saw the Hennipin brain trauma centre at 6 months post, or so. Some good people, and most of them get it. See if you cane get referred to Dr Marian Rubenfeld, neuro-opthamologist in Minneapolis and area. heaven sent.
hang in there. My son (11) said to me the other day that he thinks I am getting much better (16 months on) and when I asked him why, he said it was because he rarely hears me crying at night. Yikes! I actually tried not to cry too much because it hurts a lot and leaves me with a massive three day headache. How ironic that when we need to cry and should cry, we can't!!

Hang in there for your kids. It will get better,

Mokey... can you remind be about your accident and symptoms? Where do you live in MN? I have connected with another PCS person who is at the 22 month mark and is finally symptom free. She also went to HCMC at the 6 month mark AND saw Dr. Rubensfeld. I also have an 11 yr old daughter who hears me crying :(. In fact, last night she sent me an email from her room..."mom I know you are miserable.... I hear you crying.... you need to stop and pray to God." It is hard to explain to anyone the misery of this chronic illness.... how you wake up to it and it is with you every second of the day. Mokey... what are the symptoms that remain for you? Do you see life coming back?

After Reading what you had to say, CC, I know I am doing FAR FAR too much. I just sorta plow through a day in absolute agony.... and honestly barf throughout the city. Time to slow way down. Mokey... I am seeing Sarah Rock something or other at the program. Did you feel they were helpful to you?

Much love to both of you..... THANKS for the tips.

Hi Sara,

I too am a mom and have had to tone my schedule way down. It breaks my heart....I have always been a very active person with them and now I feel as though it's all I can do to get through the basics. I'm 5 weeks into my 2nd concussion and praying for strength.

Glad to see you on our board - take care of yourself!

Sara,

Attending athletic events are way too much stimulation for PCS recovery. I can understand why you are so miserable. Your kids need you more as a steady mom at home than they need you at their games. You can have someone else take them to games. When they get home, give them some one on one time is a quiet room to tell you about the game. The multiple voices, screams, etc. is far more than your brain can handle.

Same goes with neuro rehab clinics. They often overload you with treatments and tasks. There is a big difference between waking a brain that was comatose (lots of frequent therapy) and gently helping a post concussion brain sort things out.

I honestly do not agree with therapies OT, ST, for PCS. My limit to therapies is to learn the limits and work-arounds for dealing with current symptoms. Each symptom needs to be addressed individually.

Trying to push through rarely, if ever works. I don't know of anybody who has successfully pushed through to recovery.

Your daughter sounds like she can be good support. Ask her to help you slow down and keep things quiet. Bless her heart. She sounds like she can become your rock.

Have her check out the links at the bottom of my Vitamins and Nutrition thread/post.

My best to you.

Sara
 

So glad to see you followed your path to this place. I have tended to post primarily on the SCS board as it is what ultimately helped me with nerve pain matters which overwhelmed.

Aside from a memory clean slate on may fronts after concussion, I found I had persistent unrelenting headache [I forgot to metion that when writing on the welcome board] which stayed for months following the wreck. Interestingly, acupuncture seemed to finally be the ticket for overcoming the headache as meds did not touch it.

I hope all will begin to come together for you in your continuing recovery,
and soon,
Mark56:hug:

Hit the 3 month "fail" mark
 

My 3 month mark was yesterday. I cried a lot. I try to cry in the shower so my son doesn't hear/see. I try not to cry at all because yes it usually means worse pain, but sometimes a person just has to break to heal.

I cried because I remember hoping it would take a maximum 3 months to heal.

I'm not trying to hijack your post but instead just to tell you how I relate. :hug: it's good to "meet" you, and something about how genuine you seem in your posts makes me feel like I can be very real with you about my journey, in the hopes it's therapeutic.

Granted I'm halfway to your 6 month mark but I haven't had one day of normal either. In fact I'm beginning to truly fear what kind of miserable life is left for me now. The longer it drags the more I feel like there's no hope it will change. I think that's probably a pretty normal response. I also think that this should be a place where we can really let our real, valid feelings out. I'm really tired of looking for a rainbow, all for the comfort of other people.

I could sure use some kind of anti depressant before I make a horrible mistake one day in sheer desperation to make the pain stop... but the problem is, no help is coming. Long story there, and it's all about WCB and the worst first world healthcare system ever, in Canada. I live far, far away from any resources that would help me.

My son is my sunshine that reminds me that life has to march on. Life doesn't resemble my life pre-injury, at all. I've missed many sporting events. I barely leave the house, I don't drive.

But life has developed its quieter moments that are rich and worthwhile. I baked cookies twice with my son and have played games with him... I've never been that kind of mom! It was always career, school, sports, go go go! Now it's shhh, quiet, sit with me, let's talk, and we really connect.

I can't read aloud to him anymore, that bothers me. He reads to me instead. I can't follow the story but it's comforting to hear his voice.

My husband has been immeasurably patient and kind, so I ALSO owe it to him to crawl out of the pity pit, and plod on.

I do find I'm jealous lately of other posts, where people are prescribed therapies or medications. I've got nothing. WCB keeps it that way because if they allowed me to receive help, it would validate my injury. Their interest is to get me back to work at the expense of my health.

It actually comforts me when Mark in Idaho is skeptical of therapies because it helps me believe I won't be left behind in healing, since I'm not receiving ANY care, beyond his diligent reminders to have quiet rest, ice the neck... and take supplements. Lol... I've received better advice here than anywhere and I'm very, very grateful.

Point is, don't feel guilty for grieving, and know that you're not alone in your dismay at how this PCS-life turned out so far... And there are shoulders here, connected to heads that really "get it".

Lamenting
 

State run health care, the friends in UK, and elsewhere who cried out wondering aloud WHY the U.S. would fall into the pit of impossibly impotent state run health care. Lobbied against it with our "leaders" in the U.S. all of whom were marching to a drum beat by some gal from San Francisco.

We never learn from world history, only by expeience....

I feel for you MsRriO. Caring.

ARGHHHHH........
Mark56:grouphug:

MsRrio,

Your son is so fortunate. He will blossom under this new style of relationship with his mom. It's like what happens when a child is homeschooled.

Just beautiful.

Go ahead. Grieve the past you but celebrate your new opportunities.

btw, Most of the meds have a mess of side-effects. Doctors prescribe them to pacify their patients, not to help them get better. They also are usually taking 'shots in the dark' with the meds. Try this and see if it helps........

The biggest help is oriented toward helping us learn work-arounds and accommodations so we can try to move forward. As we learn these, we lower our stress levels which enhances our brain's opportunity to heal.

Hang in there. It may come slow but improvements will come.

Give you some a big hug for me.

My best to you.

More Ick
 

Hey guys... thanks so much for all the support. Today at Vestibular PT, the PT had my head back and when I sat up, I blacked out and vomited ..... she then felt so bad that she said she has never seen a patient like me so sick so far out from an accident and said there was nothing she could do for me anymore.... :(.

I hear this often.... I am scared I am forever stuck dizzy and sicker than sick. Any words of advice my dear neuro friends? I do not understand what has happened to my brain.... I constantly feel like I just got off a carnival ride and am so so miserable..... My old life feels like it is slipping away into oblivion.

Omg that is awful
 

I feel so badly for you. I know you likely hear that often enough but I just do. :(

I also don't understand how your PT can determine there's nothing they can do for you anymore... surely there is something that can help.

Please forgive me I can't remember if you've seen a neurologist yet?

Haven't been in your shoes, so thinking the only thing I can offer is a hug of support. I hope someone here or on your care team can offer something! I'm so sorry this is happening to you.

Oh Sarah how horrible :( I can only assume you were hopeful that the physio would help and it must be crushing that it didn't. I have just started vestibular therapy (9 days now) and I haven't had any bad moments like yours. I thought I was going to vomit a few times but I didn't. I also do not have any dizziness unless I'm moving. Mine is more of a disequilibrium which I believe to largely be because of my eyes.

I'm sorry but I don't remember if you've seen an ENT? It sounds like your kind of dizziness might be something they could help with? I don't know if this will make you feel any better but... from what I've read... dizziness is a symptom that usually indicates a longer recovery time.. the reason I'm saying this is because I don't want you to think you aren't going to get any better, it's just going to take a little longer unfortunately. I'm in the same boat but I'm trying to be patient and optimistic. (neither which come naturally to me!)

Again, not sure if this will make you feel better or not, my physiotherapist said, after a little prodding, that this type of treatment is not successful very often. It's worth a shot and you'll know by 6-8 weeks if it's working or not but the success rate is not very high. I decided I had nothing better to do for 6-8 weeks :rolleyes: so might as well give it a shot but I'm not getting my hopes up.

Have you been able to quiet your life down some? I can't see how you'll ever recover if you keep going the way you are. I hope you're feeling better now from your physio. I just finished mine and everything's moving! Time to go meditate.

Have faith that you WILL feel better in time. :hug:

CC

I did not start my PT until 7 months post injury. Many times I had wished I had started earlier. Your posts makes me wonder if you are starting too early. Are you able to get rest? I know the first two months of my injury I just sat in a recliner in my living room looking out a window. It was the worst two months of my life but in hind sight. I think it was one of the best things I could have done. That kind of sedation is very hard on the body and takes serious PT to correct later.

Vision Exam?
 

Dear Sara-
I am now 6 months after my accident (rear ended on the freeway in July 2012 with my son in the passenger seat). Initially, the PCS and PTSD diagnosis and the neurologist prescriptions (propanolol and trazodone) for the migraines and his reassurances that all will get better in time pacified me. But even if the "normal" timeframe is 6 months, it is a long time to be in pain.

I finally got tired of losing weight (some 40 pounds which is a silver lining I suppose) and not being able to read or watch movies (I am usually a college professor but am now on sick leave; I am hoping I can return!), that I went to get a neuropsychological exam that revealed some convergence insufficiencies. I went to the University of California binocular vision clinic, and they further diagnosed me with convergence insufficiency and esophoria.

Basically, the whiplash/concussion wiped out the muscle memory of my right eye working with my left eye. Because I've been seeing double, my brain suppressed/turned off the images from my right eye because it was too stressed to reconcile the double vision. This is why I always felt dizzy and nauseous and couldn't read or watch film. My brain couldn't process the double images. I still can only read in limited 30 minute chunks of time. I continue to lose weight but now the doctors are thinking it is cortisol overproduction from anxiety/ptsd. (Meditation!)

The prism glasses help and the vision therapy is rebuilding my eye coordination. But it is the most painful 4 minutes of my day (vision therapy). I would much rather run 5 miles-it's that painful.

So, please do get your vision checked out. The doctors at UC say that the eyes are part of the brain- and the lingering dizziness/nausea may be due to vision issues.

This forum has been so helpful. I've only been able to recently read and understand the wealth of information here. Thanks!

Berkeleybrain...rings so true! My left eye still suppresses a bit when i am tired. 17 months post brain injury. Reading gets better with prisms for me too, but I still have a long way to go. I am a univ. Prof too....we read and write for a living, along with teaching. Tough to habe the vision problems along with everything else!

It took me almost a year to read and write at the same time. Breakthrough came with prisms at 11 months. Sigh! Oh well. It keeps getting better!

New/mn too
 

Hi I am new to the board. I am 5 months post concussion/fall. I am also extremely frustrated. I don't have any children but I am a full time high school art teacher, was also a fitness instructor and an at home tutor. I led an extremely busy life. Now I lay on the couch and feel sorry for myself.
I would love to share information and resources to try to get better. Are there any other mn people on the board?
I live in the northwest metro.
Su

Hey Su
 

Sara, who is the first poster on page one of this thread is from MN and maybe your metro area.... indicates thus in her post, take a look. :)

You may private message her by ckicking on her name in the post box there, opening the drop down menu, click "send private message," which will open a private message window in which to communicate. If you are so new to the system private messages are not yet open to you, the public message route is still enabled I believe.

May all be well with you :grouphug:

Folks,

Mark has a point here.

You have to one-on-one with everyone in this time of recovery.

When things go bad with you, you have to cut ties - be off to self, limit ties with those things that are overstimuli.

When I worked in Neurotrauma, as we place our patients into the "mainstream" of care, we constantly battled the hospital system, to place them in the suites of rooms for care, for step-down, they needed one-on-one care, not general rooms, not constant in-flow of people with this or that intrusion of general runs of activities.

One nurse, one aide, one tech, one therapist - all things revolving around their needs, and slowly bringing in more activities as the "team" saw fit with the patient evolving into acceptance........... you know how busy a general hospital room can be, well you don't want that type of thing around you at home when you are having problems with eveything helter-skelter in your head.

So, you have to set limits, and set rules - and even be tough with yourself about those rules...........your recovery depends on it.

Quiet, Rest, easy does it.......the family will learn, the kids will appreciate 'their" time with mom/dad, as they learn to accept your needs.

Our recovery cannot be rushed. Even though we would love nothing better than getting this over with.

I still, after 2.5 years, still only set aside time to go on short shopping trips with the wife, otherwise, Im inside, or short walks with my dogs, and no real stopping and talking with neighborhood friends...and few phone conversations.

I lie in MN and would be happy to share resources!