Concerned and frustrated
 

I'm almost five months into my PCS. I am improving but I'm concerned about a couple of things.

I went to a birthday party and there was about 20 people in the room. I did good for about an hour and a half. I stayed in the corner and focused on a couple of people. I didn't "mingle" like I used to do. I was doing fine and then all of a sudden my head started to whoosh loudly, I got off balance and had to sit down. I tried to focus on simple thoughts and tune out the room but it didn't work. I went outside, sat down and cried. Needless to say... we left.

I also am concerned about the whooshing noises. They vary in loudness. I know I posted this before but along with the noises comes a head fullness like it's going to explode and this awful pain behind my eyes.

I'm frustrated because I have been going to the "Head Injury Clinic". When I mention my concern the neuropsycologist justs smiles and continues to ask me about how I'm feeling emotionally. Well hmmm lets see, DUH.... I feel like crap....

I read online about the pulsile tennitus and it's causes. I'm concerned because last night I had the whooshing, pain behind the eyes, twitching and couldn't sleep due to the pain. If I bend over my head feels like it's going to pop.

Is this normal????? I finally called a different Neurologist outside of the Head Injury Clinic because I want to ask him questions without him focusing on the psychological aspects.

I think overall I'm doing pretty well. I have my down days, my "pity parties" but I do overcome them and feel better after I've let it out.

Last night I almost went to the emergency room.. I dont know maybe I should have.

I know people have mentioned having these noises as I have asked opinions about it before. Does anyone have physical symptoms as well?

I have some of your symptoms - dizziness, tinnitus, off-balance, bending down feeling imbalance etc., (2.5 years completed). 2 years ago I even did lumbar puncture to rule out any other thing.

I cannot be in room full of people (even 2 people talking and walking bothers me). Because of this symptom I have no social life whatsoever.

I completely understand about neuropsycologist. How can you feel emotionally great when you are constantly dizzy, headachy, fatigue etc., I do get ok times in the night and emotionally I feel good that time. Symptoms affects emotion not the other way.

Lately I found vision therapy training prism lenses helps me some what.

Crystal,

Is the Head Injury Clinic just a Neuro-Psych clinic? He sounds clueless. Not uncommon for NP's. Some believe most of a head injury symptoms are psychological.

Your event was an overload of your sensory system causing an increase in adrenaline which increases your blood pressure. It is the 'fight or flight' survival mechanism in your brain. It just does not work for those of us with PCS.

If you can, keep a blood pressure kit hand, like in the car. When you have this whoosing, take your BP. I bet it is high and the whoosing is from the extra blood flowing through your head.

There is no way to be in the 20 voices environment and focus away from the voices. The brain still hears the other voices and struggles to process them. Ear plugs can help but many are embarrassed to use them. It is either, "wear the ear plugs" or "leave the event" or "have a melt down."

I went to a new barbecue restaurant last night with my wife. The main dining room was too loud so we sat in the bar. The music kept changing volume with each song so we asked for the volume to be turned down. Even then, I needed to put my ear plugs in.

Crystal,
I think that if you managed an hour and a half before there were any problems then you did pretty well. Being in crowds is something that I have gotten better with. At first I would go to a party and literally stay for 10 minutes. I can manage longer now. The trouble is that if I leave when I am getting symptoms, it is probably too late and then I will need some recovery time. Perhaps you could try shorter parties and then build up.

I am not sure that it is just the volume of noise that is the problem, but noise doesn't help, so if ear plugs are of benefit to you then go for it.

I quite often use ear plugs when there is loud noise, and no one even notices that I have them in. They are difficult to see from the front, and, if your hair covers your ears then they are completely concealed.

Concussed Scientist

I use earplugs but I hate the feeling. I went to dinner and had them in...and still suffered the next day.

I will say that today I woke up feeling like crap but after talking a few mins to a friend...she said "you feel like crap a lot...just try to do a little less today and see how it goes. Don't get all upset..it will make it worse". She was right. I was able to get out and do a little bit and I feel like crap now, but not much worse than if I stayed home laying on the couch crying or upset that I still feel like crap.

I guess I'm learning.

I'm going out Sat night to dinner...and I am going with the attitude of I need to get out and I'm going to have a nice time. I'm hoping not to suffer the next day, but if I do I will just take it easy (or easier...easy, relax...words don't fit my personality or lifestyle!)

Take precautions (earplugs)...and have an exit plan if you need it--sometimes I take my heatpack for my neck (if nothing else it feels nice).

Hope next outing goes better....and it will you have to believe it will.

oh...and the whoosing noises...I get them when I'm what I consider overstimulated...when I've just simply been around too many people, talked too much, or too much noise around me.

The Head Injury Clinic has both a Neurosurgeon and a Neuropsychologist. My first visit I saw both of them. They pulled me out of work and sent me home with the Elavil prescription. The second time I just saw the Neuropsychologist. The third time I was post emergency room and I only saw the Neuropsychologist. The Surgeon wasn't in. He basically told me to see the Neurologist. The last time I went I saw the psychologist and the PA.

That basically is the extend of my care with them for the last five months. I have a follow up on 12/20.

I've seen this Neurologist two times and today will be my third time. He told me at my first visit that in a few months this will all be over.

My Neuropsychologist told me in a year this will all be a bad dream.

The psychologist who did my neuropsych testing said a year to 18 months.

So now I dont believe anyone.....

I work in cardiology . My blood pressure while mildly whooshing was 98/78 and my heart rate was 106. I do have occasional palpitations but I think it may be the medications.