NeuroTalk Support Groups - Dizzy/Lightheaded all the time..

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Dizzy/Lightheaded all the time..

Hi everyone.

I've just been diagnosed with PCS after over a year of my first concussion. which was followed by two others in the same year.

I've been reading a lot of posts on here and noticed not many people post about dizziness. This is my main issue, as I experience it almost all day everyday, and find it really impacts on my ability to do most things.

Is this normal or should I be looking into something more serious?

I've had nearly every test I can imagine MRI, multiple CT scans, Vestibular function testing and every heart test known to man.

Thanks for taking time to read and if anyone has ANY suggestions please share them.

Zac,

Welcome to NeuroTalk.

Has anybody tried the Epley Maneuver on you ? You can see YouTube videos of how to do it yourself but it is best with the help of a therapist.

Also, how is your upper neck ? Do you have any neck symptoms in the slightest ? Subtle upper neck injuries can be asymptomatic except for symptoms that appear to be unrelated to the neck.

My best to you.

Quote:

Originally Posted by Mark in Idaho (Post 1110135)

Hi Mark.

I can't really think of any problems I have with my neck besides its very stiff, I also get a lot of back pain which sometimes goes into my neck.

Hi Zac,

welcome to the NeuroTalk Support Groups.

There are probably better explanations but I'm tired so just posting here a brief explanation of the Epley manoeuvre that Mark mentioned.

Just scroll down the page until you get to

Office Treatment of BPPV: The Epley and Semont Maneuvers
http://www.brainline.org/content/201...y_pageall.html

It might help explain a little more.
A lot of people who have dizziness or vertigo have found it helpful.

If you search Epley in the Forum search feature here, you'll bring up older posts.

Here's just one of them.

http://neurotalk.psychcentral.com/thread166884.html

Quote:

Originally Posted by Zac From Australia (Post 1110093)

A couple of questions:
1. How did you get your concussion? It's hard to get one without some neck involvement and Mark is right about being VERY attentive to that issue.
2. Is your dizziness connected to some activity? For example, some PCS patients find they get dizzy when their heart rate increases during exercise/exertion. I get "the spins" if I'm overtired or overdoing it.

Quote:

Originally Posted by Hockey (Post 1110181)

I've had a few concussions the most recent was from a a few punches to the side of my head.

And I'm pretty much constantly lightheaded, but it tends to get a lot worse when I'm doing anything physical. I've had to completely stop exercising because of it.

A stiff neck is a strong sign of a neck injury. Finding someone who can help you gently treat your stiff neck will be a help. It is also good to work on good neck/head posture while sleeping or resting so they your neck can heal.

First thing I would do is look for an upper cervical chiropractor.. if that alignment is off it can cause all sorts of problems..
A good multi modality chiropractor can help get all in alignment and possibly work on the neck muscles too. using ultrasound, IF stim, even perhaps some low level laser therapy..
The chiro I found did all of that and was very helpful

How is overall head/neck posture forward of the body , hunched?

Jo*mar,

Although you know I agree with the need for upper cervical chiro work, I believe you found a very rare chiro who was able to help with the multi-modality approach. I have seen 18 different chiros over 32 years and finding that good upper cervical help has been difficult. Most were just too aggressive. Of the 18, only a few were helpful. The rest were too generic and narrow in their scope. One of my favorites that took a long time to find and who had helped with almost every other issue I had, actually admitted that his treatments were not resolving the problem.

As again, I agree with the need, I wish everybody good luck at finding that special person who can truly help. Be careful to not get sucked into an 'I can fix this. Just keep paying for treatments.' chiro office. If you don't start to see subtle improvements in the first few weeks, keep looking.

Quote:

Originally Posted by Mark in Idaho (Post 1110253)

Hi Zac- does your dizziness feel like the room is spinning?
If so, I can relate- that is one of my worst side-effects. Search for someone versed in BPPV and they should be able to help you. My understanding is that chiro therapy would require resolution of the vertigo beforehand.
Keep us posted...

Welcome Zac From Australia. :Wave-Hello:

Quote:

Originally Posted by Mark in Idaho (Post 1110253)

I wish everybody good luck at finding that special person who can truly help. Be careful to not get sucked into an 'I can fix this. Just keep paying for treatments.' chiro office. If you don't start to see subtle improvements in the first few weeks, keep looking.

Totally agree.
Don't sign up for any long term treatment plans - try a few times to see if they are beneficial at all -- and stop if symptoms get worse..

Another thought: as you were punched on the side of the head, has anyone checked for damage to your auditory nerves?

Symptoms of such damage include, deafness in one ear, stabbing ear pain, tinnitus, dizziness and vertigo.

I whacked the side of my head on the driver's side window and wrestle with all of those issues.

It's not a spinning sensation, it's more lightheadedness and poor balance, I've been told by my physio that my balance is horrible. He gave me exercises to do and ask me to get my inner ears check but it all can back fine and the exercises haven't really helped.

Quote:

Originally Posted by Zac From Australia (Post 1110306)

Although research is being done, at places like Canada's Dalhousie University, on new imaging technology, at present doctors have to rely on MRI or CT technology to see anything past the eardrum. Those images are, at best, crude and certainly not definitive.

For now, the only way to get a really good look at the ear is exploratory surgery.

Read more: http://atlantic.ctvnews.ca/maritime-...#ixzz3KSnwyWfo

Similar light-headedness problems - any solutions?

Zac, my son (age 25, concussion from workplace accident Jan. 2015, diagnosed PCS) has similar problems: constant light-headedness (as well as headaches & a smattering of other PCS symptoms). He finds the light-headedness really debilitating and wonders if you are now better and if you found anything that helps. Thank you!

KarinaM,

Welcome to NeuroTalk. Sorry to hear about your son. Zac has not posted since last November.

The lightheadedness is quite common. It can be vestibular or if just when standing or such, it can be due to the brain struggling to control blood flow to the head.

What diagnostics and treatment has he received ?

I have a constant lightheaded and dizzy feeling also. It is not a spinning sensation. It is just a dizzy / off-balance / wonky feeling - that's the only way I can describe it. It gets much worse if I turn my head or turn my body or even move my eyes around a lot. It also gets worse if I try to exercise more than just a fast walk or very light jog.

I've done vestibular therapy, which has helped, but it has not completely gone away. I am wondering now if I should have my ears checked? I also get slight pane, pressure and a full feeling in my ears and occasional popping in my ears. Anyone else have thoughts?

Thanks - my son was interested to hear of Zac's situation, as we are also in Australia (where it is difficult to find doctors who know much about PCS!).
My son's current symptoms, which will probably sound familiar: persistent light-headedness (varying degrees, not off-balance dizziness, but more like faintness), persistent band-like headaches, back pain, chest pain, neck pain, rapid heart rate on mild exertion & sometimes when at rest, sensitivity to light & noise, sensitivity to watching movement, head/temple ‘tingles’, brain pain from movement such as ‘nodding’ head, insomnia & sleep disturbance,inability to visually focus on things close up (increases light-headedness), inability to read from bright white paper & electronic screens (increases headaches and light-headedness), head discomfort travelling in lifts (elevators), inability to regulate body temperature properly, inability to process new information/ complex thoughts, vivid, disturbed dreams, fatigue, unusual urinary frequency and urgency (esp. when headaches & lightheadedness are bad), pulsatile tinnitus (just learned that term yesterday!), poor cognitive function (scattered, foggy thinking; inability to focus); and has had clear nasal discharge from one nostril which has diminished (2 beta-2 transferrin tests were negative for CSF).
Nothing unusual has turned up on normal MRI and CT scans, as we know that more sophisticated imaging techniques are required.
GPs here in Canberra are not very cluey about concussion or PCS, and even the local neurologist said he wouldn't confirm a diagnosis of PCS because he wanted to find something 'organic' on diagnostic imaging -- definitely one of those times when I felt that I (a mother & a professional health researcher) knew more than the 'specialist'! My son has recently been seen by a neurosurgeon who gave him the PCS diagnosis (3 mo. after the injury) & referred him to a neuro-psych in Sydney (hmmm...wonder what the 3.5hr bus trip will be like).
My son is obviously keen to know when he will be 'better' and able to return to his normal life -- and I fear for his mental health if he is told that his condition could continue for a year or even longer. He is currently thinking that he doesn't know how he will cope if it goes on for another 3 months. Big part of the problem is that no one with a medical degree (well-informed mothers don't count) has given him the straight talk about what PCS means for him in terms of what he can/can't and should/shouldn't do. Live on his own? House-sit for a friend for 6wks? Return to work (retail environment -- scene of the injury!)?
25yr old guys are in a big hurry to get back to normality and are not receptive to information that puts a dampener on that.
Would welcome any feedback/tips/advice as well as any info from anyone in Sydney or Canberra.

Quote:

Originally Posted by KarinaM. (Post 1134802)

Thanks - my son was interested to hear of Zac's situation, as we are also in Australia (where it is difficult to find doctors who know much about PCS!).

My son's current symptoms, which will probably sound familiar: persistent light-headedness (varying degrees, not off-balance dizziness, but more like faintness), persistent band-like headaches, back pain, chest pain, neck pain, rapid heart rate on mild exertion & sometimes when at rest, sensitivity to light & noise,

sensitivity to watching movement, head/temple ‘tingles’, brain pain from movement such as ‘nodding’ head, insomnia & sleep disturbance,inability to visually focus on things close up (increases light-headedness), inability to read from bright white paper & electronic screens (increases headaches and light-headedness),

head discomfort travelling in lifts (elevators), inability to regulate body temperature properly, inability to process new information/ complex thoughts, vivid, disturbed dreams, fatigue, unusual urinary frequency and urgency (esp. when headaches & lightheadedness are bad), pulsatile tinnitus (just learned that term yesterday!), poor cognitive function (scattered, foggy thinking; inability to focus); and has had clear nasal discharge from one nostril which has diminished (2 beta-2 transferrin tests were negative for CSF).

Nothing unusual has turned up on normal MRI and CT scans, as we know that more sophisticated imaging techniques are required.

GPs here in Canberra are not very cluey about concussion or PCS, and even the local neurologist said he wouldn't confirm a diagnosis of PCS because he wanted to find something 'organic' on diagnostic imaging -- definitely one of those times when I felt that I (a mother & a professional health researcher) knew more than the 'specialist'! My son has recently been seen by a neurosurgeon who gave him the PCS diagnosis (3 mo. after the injury) & referred him to a neuro-psych in Sydney (hmmm...wonder what the 3.5hr bus trip will be like).

My son is obviously keen to know when he will be 'better' and able to return to his normal life -- and I fear for his mental health if he is told that his condition could continue for a year or even longer. He is currently thinking that he doesn't know how he will cope if it goes on for another 3 months. Big part of the problem is that no one with a medical degree (well-informed mothers don't count) has given him the straight talk about what PCS means for him in terms of what he can/can't and should/shouldn't do. Live on his own? House-sit for a friend for 6wks? Return to work (retail environment -- scene of the injury!)?

25yr old guys are in a big hurry to get back to normality and are not receptive to information that puts a dampener on that.
Would welcome any feedback/tips/advice as well as any info from anyone in Sydney or Canberra.

Hi Karina

I think you have come to a good place to get information for your son. Other people on this forum have said that a lot of neurologists are not up to date on PCS. I was lucky and have one that is. But I think you are on the right track with getting the neuropsych. eval and finding a doctor that can give the right diagnosis of PCS. There does not need to be evidence on MRI and CT to diagnose PCS.

As far as what your son should and shouldn't do... I found doctors to be very limited in information / advice about that. I think at this point, you and your family are best to help him with that. What has he done so far to help with the PCS symptoms? Has he had a period of total rest and restriction from stimulating activities such as TV, computer, video games, heavy exercise, etc...? Does he have a good diet to allow for brain healing?

I can tell you that I had a lot of the same symptoms as your son, and they were very intense and very debilitating. At 3 months in, I too was wondering if I was going to make it. Please know: it does get better, yes, it does get better - but only with time and rest. It is different for everyone, but 3 months in is not necessarily a long time - it can take a lot longer for the brain to heal. I know it is so difficult, but the best thing you and your son can do is accept the fact that his life is going to be different for a while, and you have to make lifestyle changes in order to allow him to heal. I know that is not what he wants to hear, but I do believe that acceptance and rest are the best ways to get through this. I tried for months to just struggle through and carry on with my normal life, but that had very bad results. Now that I accepted and reduced everything in my life, I am on a good healing path and have made great strides.

If he won't listen to your advice, is there a friend or someone else that might help?

The bus ride may be difficult for him. Is there any way you could rent a car? One that rides higher to the ground would be good so that he does not feel a lot of the bumps as much.

There are many people that have been on this forum longer than me, but they may tell you similar things. There is also a vitamins tab on here that can help.

If you are looking for people in Australia specifically, you might start a new thread about that.

Also, If you can put spaces between your paragraphs, that helps people read your posts easier.

I hope this helps, and best to you.

Welcome KarinaM. :Wave-Hello:

Wow, He is surely having a difficult time. It would help to understand how he was injured so we can separate different issues with his injury. It appears to have been a violent injury.

First, It sure sounds like a concussion. With concussions, especially those that do not recover spontaneously in the first 6 weeks, there is no legitimate way anybody can suggest how long his recovery will take.

The local neuro who wants organic evidence is dead wrong. Don't waste your time asking him for help. Unfortunately, this neuro is not uncommon.

It sounds like he has suffered injury to his upper neck and brain stem. The injury and inflammation can cause the bodily symptoms. Reducing that upper neck inflammation will be very important. A PT/physiotherapist with good skills at subtle upper neck injuries will be helpful.

Until he finds a knowledgeable doctor, you both can gain a lot of understanding from this forum. In the Vitamins sticky at the top, there is a good post full of information and links to outside information. The Brain Injury Survival Guide is very good. There is a link to the updated vitamin info at post #101, too.

An important concept for him right now is simple but very difficult to carry out. He needs to accept his current condition as the new him. He needs to look at any improvements as valuable gains worth his appreciation/celebration, even if those improvements do not last. Looking at every improvement as "Yes, I improved but I am not back to normal. When will I get back to normal ?" is counter to good healing. Stress is the biggest limit to recovery.

I don't mean to discount his condition. Many of us truly understand the misery he is going through. We also know that fighting against his symptoms is counter to recovery. Recovery from a serious concussion takes time and discipline.

A neuro-psych assessment will be very helpful at understanding his injury. I hope he is planning on spending a few nights in Sidney to rest up from the long bus ride. A neuro-psych assessment can be exhausting.

More later. I'm hitting my limit.

My best to you both.

Hi Karina,
Welcome to NeuroTalk. :)

There is a Professor Ian Cameron that I've read a lot about.
http://sydney.edu.au/medicine/people...an.cameron.php

http://www.rehab.med.usyd.edu.au/
Rehabilitation Studies Unit, Sydney Medical School, University of Sydney

I thought the Brain and Mind Institute would have more info but they didn't have much about TBI/PCS at all from what I could find.

Maybe even phoning them for some advice could give you some direction in finding knowledgeable doctors in Canberra or Sydney.

Melbourne has more... mostly sports related.

Many thanks for your comments, which I have just read out to my son, who also says 'thank you -- much appreciated.' It's been reassuring for him to know that there are others who have experienced what he is going through.

Will try to put more spacing in the text -- didn't realise that it would come out the way it did!

Awesome -- will follow up on these suggestions.

Reply to Mark:

My son's injury: a heavy box (can't remember the exact weight) of flat-pack furniture fell onto his head from a shelf about 1m above; about 10 min. later he hit the same spot on a metal beam.

Injury symptoms (physical and mental, as noted in earlier post) experienced about 70hrs after & have been on-going & sometimes worsening.

No real 'treatment' as such -- really need to get someone to understand that he needs a team of people to develop & implement a care/recovery plan. Good local neuropsychiatrist has just confirmed that there are no neuro-psychiatrists in Canberra with expertise in treating people with TBI & that he agrees that it's best to have the initial assessment done in Sydney and then get follow-up care from someone local.

Am trying to explain to my son that any neuropsych assessment in Sydney will be very tiring and he won't want to make the trip up & back in one day -- but he (always argumentative & not one to easily accept others' advice) is concerned that sleeping in a strange hotel room wouldn't be good, either. (Driving is a possible option, but long-distance coach is probably more comfortable & we could both sleep!)

I am currently focused on monitoring him for signs of increased intracranial pressure following a secondary bump on the head 6 days ago. :-(

I hope you are really looking for Neuro Psychologist.(Ph.D.) Neuro Psychiatrists (M.D.)are vastly different. They can be helpful if there is a serious need to be medicated.

Check with the neuro psych to confirm how long the testing will last. It can be an all day affair.

I would not worry about Second Impact Syndrome at this point. His first two bumps could be almost considered as one event. The recent bump would have manifest severe symptoms within 24 hours or so. He would develop an intense head ache and have other severe symptoms if SIS was an issue.

My best to you both.