[bachissimo]

I would find it useful if some of us, those who have been unlucky enough to deal with this for a long stretch of time, can have a dedicated blog to track our progress (or lack of it).

I am not feeling well enough to write the full story, but the very summarized version of this is as follows:

- impact on July 1st 2014

- virtually a full recovery by mid august. running, sprinting, weights, reading, watching,... never a headache, no moment of dizziness. the only weird this is that I heard this ticking sound in my head/neck when I went to sleep sometimes (for a minute)

- flight to europe and back in end-August. The same day I am back I went on a treadmill, and had a moment of vertigo (or a skipped moment (?) more on this later). The months that followed were the worse I ever lived (went through breakup too): dizziness/light headed (main symptom), headaches, fatigue, insomnia, depression. Off work for 2.5 months.

- very gradual improvement until july 2015, where I felt good on most days. if I average, perhaps an hour of dizziness a day.

- flight to europe and back in August 2015. Got dizzy there, and when I came back. I understood that flying was an important trigger but still did not appreciate the full extent of this. Within 2 days, I go for light workout and a push-up gives me vertigo (or a skipped moment (?) more on this later). Again 2 months off work. Dizziness, headaches, insomnia... But this time I developed new triggers: noise! and reading automatically makes me worse. Wasn't to the same extent the previous year. The previous year I could play piano, now I can't without getting dizzy.

- by Jan 2016: I am on an antidepressant (lamictal), I use clonazepam to sleep (direction of my pscyhiatrist) and exercise lightly at direction of neurologist.

I had some good weeks, when I almost forgot about PCS only to have a trigger set me off for weeks.

DIZZINESS is my main problem. I do not mind headaches as much, as I can take medicines for that, although one day I overdid Ibuprofen and had stomach issues. When I read this forum I only compare myself with people who experience dizziness, as it is possible that the root causes of different symptoms are different (obvious?).

I am waiting for my insurance to start my vision therapy. I have convergence problems, and since my second flight, it became obvious that reading is a major issue.

the more I rest the better I feel. But eventually I get sick of resting, so I go back to working, I try to pace it, but eventually, PCS will catch up on me.

suspicion: since I am the only case I found so far where flight was, without a shadow of doubt, a MAJOR set-back (equivalent to another concussion), I suspect something else is going on. I am thinking that perhaps I had a mini-seizure(s) on the flight or when I got back. IS THAT POSSIBLE?

I track my symptoms everyday, and eventually I will upload a chart that can speak a million words about what I am dealing with.

[Mark in Idaho]

A mini-seizure would not normally cause ongoing problems. They tend to be momentary and passing.

How long have you been tracking your symptoms throughout the day ?

Have you tried anything else to help you sleep besides the Klonopin ?

The Lamictal is odd because it is not an anti-depressant. Are you having depression symptoms ?

What are your symptoms that keep you from sleeping ?

[SMSotr]

I, too, have had problems with airplanes and have dizziness and headaches on a daily basis.
My first plane flight was 15 months post my initial accident, 9/13, and I refused to get on another plane until this past December. I have since told my family that flying and being in airports is way too over-stimulating for me and the vacation is not a vacation with my PCS.

It doesn't sound like you are having seizures to me either. The 2 times I have flown,my headaches, dizziness, and nausea severely set me back for weeks. I am sound sensitive and had to wear noise canceling headphones in the airport and plane in December 2015. I was not smart enough to do so on my first flight in 2014 and suffered for 1 month upon returning home. Between changes in air pressure affecting the brain and ears and the noise level in and outside the plane, flying is not the best thing for any one with PCS.

I have convergence problems, too, and have been receiving vision therapy & wearing prism lenses since 9/14. Reading is becoming somewhat more tolerable, but I must monitor how long I read or use an iPad as I get headaches from visual tasks.

I'm pretty bored from all this "resting" and have been finding tai chi and yoga classes are helpful. The calming music in these classes is tolerable and I crave the social stimulation of a class as my sound sensitivity makes it difficult to go to movies, restaurants etc.

Good luck with the vision therapy. It has definitely helped me!


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[seth8a]

Originally Posted by bachissimo

I would find it useful if some of us, those who have been unlucky enough to deal with this for a long stretch of time, can have a dedicated blog to track our progress (or lack of it).

I am not feeling well enough to write the full story, but the very summarized version of this is as follows:

- impact on July 1st 2014

- virtually a full recovery by mid august. running, sprinting, weights, reading, watching,... never a headache, no moment of dizziness. the only weird this is that I heard this ticking sound in my head/neck when I went to sleep sometimes (for a minute)

- flight to europe and back in end-August. The same day I am back I went on a treadmill, and had a moment of vertigo (or a skipped moment (?) more on this later). The months that followed were the worse I ever lived (went through breakup too): dizziness/light headed (main symptom), headaches, fatigue, insomnia, depression. Off work for 2.5 months.

- very gradual improvement until july 2015, where I felt good on most days. if I average, perhaps an hour of dizziness a day.

- flight to europe and back in August 2015. Got dizzy there, and when I came back. I understood that flying was an important trigger but still did not appreciate the full extent of this. Within 2 days, I go for light workout and a push-up gives me vertigo (or a skipped moment (?) more on this later). Again 2 months off work. Dizziness, headaches, insomnia... But this time I developed new triggers: noise! and reading automatically makes me worse. Wasn't to the same extent the previous year. The previous year I could play piano, now I can't without getting dizzy.

- by Jan 2016: I am on an antidepressant (lamictal), I use clonazepam to sleep (direction of my pscyhiatrist) and exercise lightly at direction of neurologist.

I had some good weeks, when I almost forgot about PCS only to have a trigger set me off for weeks.

DIZZINESS is my main problem. I do not mind headaches as much, as I can take medicines for that, although one day I overdid Ibuprofen and had stomach issues. When I read this forum I only compare myself with people who experience dizziness, as it is possible that the root causes of different symptoms are different (obvious?).

I am waiting for my insurance to start my vision therapy. I have convergence problems, and since my second flight, it became obvious that reading is a major issue.

the more I rest the better I feel. But eventually I get sick of resting, so I go back to working, I try to pace it, but eventually, PCS will catch up on me.

suspicion: since I am the only case I found so far where flight was, without a shadow of doubt, a MAJOR set-back (equivalent to another concussion), I suspect something else is going on. I am thinking that perhaps I had a mini-seizure(s) on the flight or when I got back. IS THAT POSSIBLE?

I track my symptoms everyday, and eventually I will upload a chart that can speak a million words about what I am dealing with.

I know that this is easier said than done, but try not to stress so much about your dizziness. In the end it was determined that I had a concussion that had truly compromised my vestibular system in addition to other struggles (and if you check my history, it was a serious concussion).

Is my balance permanently damaged? I really don't know. I still struggle with some imbalance, but I don't let it slow me down. What helped me the most is accepting the fact that this may/or may not be a permanent condition and moved forward from that point. And you know what? After I stopped thinking and worrying about it so much my balance started to return. When I do feel a little bit off balance, I just take a deep breath and tell myself that I'm going to be OK.

There are a lot of exercises you can do at home to help your balance. Meditation helps, so does yoga and single leg stands. Although very troubling at first, once one realizes that dizziness is not a life threatening condition (unless you have another health condition causing it aside from the brain injury or are at serious risk for falls) it becomes a lot more bearable.

You can do it. . . . you can get back some of your old life! Just stay positive, work within your limitations, and be optimistic. I'm definitely not like I was before my accident--but I work full-time, have two awesome kids, and am training for the upcoming cycling season as well as doing all creative projects on the side like teaching my girls how to draw, playing drums, etc. I don't let the dizziness stop me. And yes, airports and flying are tough (I flown once since my accident--for my job) but if you can give yourself a rest day after the flight, that might be a good option.

Mark in Idaho wrote the most profound thing to me once "not only is there light at the end of the tunnel, there is light IN the tunnel." (And if you have ever been in the Detroit airport--that is literally true!)

Finally, do not be afraid of your dizziness (again--unless you are at great risk for falls). Challenge your dizziness day by day, accept it, and indeed this is one of the keys to getting better. Vestibular therapists know this and this is why Cawthorne-Cooksey and other exercises actually challenge the vestibular system and stimulate spells of dizziness. Compensation in the brain begins soon thereafter. I know this first hand as I challenge my dizziness on a daily basis and it has proved massive dividends for me.

Also--check out this pamphlet for further (encouraging) discussions of balance and dizziness problems. The handout if very encouraging and helpful and I got a great deal of assistance from it. The most important thing it to stay positive if you can! http://www.brainandspine.org.uk/site...e_problems.pdf

[bachissimo]

Thanks for your responses and encouragement. So far I have seen only one case where flying has caused weeks of setback, in my case it was months (6+ so far). If any of you fall in this category please let me know.

update

I went to a new neuro. He is not a concussion expert but a migraine expert. He said that it is very possible, based on my symptoms, that I have "vestibular migraine" which is a type of migraine that causes dizziness (and not necessarily headaches).

He recommended I try one of the following:

Depakote
Topomax
Propranolol
Tricylic

I am running this by my other doc. Any thoughts? I looked at a vestibular migraine forum and they have very similar symptoms. They get dizzy from random movements. They have brain fog, fatigue, migraines, but mostly dizziness/vertigo.

I also came across the following syndrome which usually happens after travel

http://www.mddsfoundation.org/

[Mark in Idaho]

Tricyclic is a category of med, not a med. Amitriptyline and Nortriptyline are the common tricyclics. It helps some with headaches.

Propranolol is a beta blocker commonly used to lower blood pressure. If you blood pressure is high, it would be worthwhile. Have you checked your BP when you have the headaches ?

Depakote sometimes helps with migraines. It is an anti-convulsant med, too.

Topamax is an anti-convulsant and also a nerve pain med. It has helped some.

They are all, "You gotta try them to see if one works." meds. Each person reacts differently.

[bachissimo]

Thanks for your comment on the medications.

Is it possible that what I have is Vestibular Migraines? Can one confuse PCS for VM?
In other words, over the years on this forum, have you seen people feeling much better after taking drugs that are used for vestibular migraines?

thanks

[Mark in Idaho]

I would not try to separate VM from PCS. There could be a link. Whether the meds will help is totally an individual situation.

Those drugs have all been prescribed for other PCS symptoms and given relief for some, but not for all who took them.

You never answered any of my previous questions.

How long have you been tracking your symptoms throughout the day ? Why do you track them ?

Have you tried anything else to help you sleep besides the Klonopin ?

The Lamictal is odd because it is not an anti-depressant. Are you having depression symptoms ?

You say you average an hour of dizziness each day. Is that in long spells or short spells of just a few seconds each time ?

What are your symptoms that keep you from sleeping ?

[bachissimo]

Sorry if I missed your questions. Here are my answers:


How long have you been tracking your symptoms throughout the day ? Why do you track them ?

Ever since my concussion, the week after I started rating how dizzy I am. I do it at the end of the day and it is a rough estimate of how dizzy/off balance/confused I was during the day.

Dr advised to track. I also that kind of person who like to link activities I do with how I feel. I know there are drawback to this, but I really think overall it has helped me understand things. I was hoping for the scores to go down to zero (as they did for 3 weeks 2 weeks or so after my concussion but got messed up completely after the flight).

Have you tried anything else to help you sleep besides the Klonopin ?
I tried a couple of drugs, including ambien. I felt terrible for a week after these. Klonopin is the only one that seems to help me sleep/help with anxiety and I did not notice it is doing harm. Recently I had a great month with almost no symptoms, I was taking 0.5mg every night.


The Lamictal is odd because it is not an anti-depressant. Are you having depression symptoms ?
My psy. who is a very smart and understanding recommended this because I have been suffering sexual sides from a medication I took and stopped years ago. So he wanted to suggest something that works (it did) with no sexual sides. Actually no sides at all. So I am happy with it. Although I am not sure I can take Topomax on top of that.

You say you average an hour of dizziness each day. Is that in long spells or short spells of just a few seconds each time ?

I think the context was: when I got better, my steady state was on average that much. But it really meant, like few hours here and there during the week. It is rarely something that happen for just an hour.

Bad days mean I am dizzy all day long. So long spells. Sometimes I would be walking or doing something and suddenly I get dizzy and I feel crap (dizzy) for the rest of the day. I can't focus and can't work during.

piano has been oddly a major trigger.

What are your symptoms that keep you from sleeping ?
It's just insomnia. Even on good days, if I am very tired I go to sleep and can't fall asleep. I tried meditation and all.

Thanks. Any thoughts would be much appreciated. I have gotten better since my last flight, I am able to exercise life weights, stationary bile for <20 mins, on good days. But weirdly piano remains impossible on most days. Although before my second flight, and after my first, I managed to recover quickly to a point where I could play.

Extremely frustrating. What is next for me is vision therapy. I have convergence problems. Sometimes I can read for many hours with no symptoms though.

[Mark in Idaho]

So, How many hours of sleep are you getting each night ?

Our local neuro rehab clinic has a sleep specialist. She spoke at our Brain Injury Support Group. Sleep is an important issue with TBI and concussion. There is a method to getting proper sleep.

What do you do during the hours before going to bed ? Are you sleepy when you go to bed or just physically tired ? There is a big difference.

What time do you get up each day ? Is you get up at a different time on non-work days ?

Do you wake to an alarm or other stimulus ?

Prior to your concussion, were you a night owl or an early bird ?

If you have a SmartPhone, this wrist meter can help you understand your sleep. http://www.amazon.com/Withings-WAM01...pulse+oximeter