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Originally Posted by Lucy
Hi Margie
I am wondering if your dizziness could be a problem with your ears. Last year I had a bad chest infection and was coughing that badly that I tore my rib cartilage. Anyway - after a coughing fit and blowing my nose something popped in my ears and before I knew it I was flat on my back on the floor with incredibly bad dizziness - needless to say it came right and I was very careful about sitting down or lying down before coughing or blowing my nose for some time afterwards.
You will note that there are several of us on this site who have had PCS for many years - mine is coming up 8 years and it takes very little to concuss me again - usually very minor bumps to the head or whip lash like jolts. I can't jog as that is too jerky but I do light cardio stretching at the gym and can walk approx 6 miles in one go. Anything further than the 6 miles brings on migraine type headaches and vomitting.
I have only developed the "ringing" in my ears in the last year. I cope by avoiding loud noise of any kind when I can, bright lights, as much stress as possible and make sure that I rest before I am tired. I can no longer work because I had a major melt down - I had a nasty few years - divorce, friends dying etc and basically had 1 disaster too many. I remind myself that in my good times I can still think, and reason etc better than average!!
When I am tired I have similar symptons to you - when I am very very tired I literally fall over. I learnt the hard way to rest BEFORE my energy was zero - it took me years to be kind to myself.
My CT and MRI were ok but my QEEG showed that I now have a learning disability etc. Unfortunately the Nuero psychs testing is always ok and above average but they don't get it that after the testing my brain feels like it wants to explode and I have to sleep which is nearly always impossible when you are over tired. My brain also has the loose feeling and my head feels like it is not attached to my spine properly. Apparently that is normal - so I have been told - ha ha - normal I think for TBI cases.
I haven't posted for a while as I have been feeling particulary grotty and didn't want to infict myself and woes on anybody. But I do hope I have made you feel better and know that there are a lot of us around!!
Lynlee
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Dear Lynlee,
I cannot THANK YOU ENOUGH for your kind and prompt reply which helps put my mind at ease immediately!!!
After a very restless night, I woke up this morning at first no dizziness while lying down, but as soon as I got up, ate a light breakfast and moved around very slowly and very little, now the dizziness is back just as intense as yesterday (the 24/7 ringing in the head is louder), but I tried to rest in bed, thus not as nauseous as yesterday (but one movement like getting up to go to the bathroom brings it all back!). My head is also feeling tensed, and the tenseness around the temples and the eyes.
Your explanations made so much sense for me now. It's incredible that I am going through the same things you and so many other PCS sufferers do. Like you, I now can walk (but very slowly only) 3 miles per shot (no more trotting for even 1 second, let alone jogging -- which I used to do too), but if I overdo it, then I pay a price. May be this is the price that I paid for the long walking I did yesterday while having this relapse (which I hope it is just a relapse, nothing worse, Lynlee ??? I am praying!). I had my ears checked out after the last dizziness bout due to an earlier relapse (before this "coughing" incident) but it was all negative. With your explanations of every aspect that you experienced, I am learning from you so much about all the relapses that I have suffered and now learned to take care of myself to prevent a next relapse to the best of my ability. Like you, I have not been able to work since the day of the accident. I have too much headache and could not concentrate for more than 10, 15 minutes without a headache and a drain of all energy. I had been mostly in bed for the first 6, 7 months. I will also learn to do mild CARDIO STRETCHING as you mentioned of doing. I THANK YOU ENORMOUSLY for your kind help!!!
MAY I ASK FOR ONE MORE HELP FROM YOU and FROM ANYONE WHO CAN HELP, URGENTLY?: I don't think my neurologist is experienced with BTI/PCS. I live in Northern New Jersey, COULD ANYONE PLEASE REFER ME TO A BTI/PCS-EXPERIENCED NEUROLOGIST anywhere in the NorthEast surrounding New Jersey? My doctor so far has not pointed me to any comfort zone to understand or how to take care of my PCS at all! He shows so much confusion and baffle like me each time I see him (every 2 months average). He does not appoint me to physical therapy although I asked, nor any testing like QEEG or Neuro Pschy. like you described, nor prescribing me any Anti-depressant, nor mentioning Migraine, nor telling what TO DO OR NOT TO DO to avoid A RELAPSE ... I NEED TO SEE A PCS-EXPERIENCED DOCTOR SO BADLY! HOPE YOU ALL CAN HELP ME WITH A REFERRAL OR HOW/WHERE TO START FINDING ONE! THANK YOU SO MUCH IN ADVANCE FOR ANY REFERRAL!!!
Thank you sooooo much again Lynlee, you help me seeing my illness with a new light and more preparation for a longer term stand. This forum is the best thing ever happened to me since the fateful date 6/12/08 in my life! Needless to say, like many of you, I dared not plan a long living like my previous generation of relatives still living at 60, 70, 80, 90 and beyond. I am now living 1 day at a time. A good day for me would be a day without the relapse (so today is definitely NOT a good day!).
I am still praying that I did not cause a tear in my brain due to the coughing!?! (The pain in the head, the severe dizziness and the nausea scare me!!!)
Have a good day Lynlee and Best of luck to you and us all!
margle