[CherylR]

Hi all,
I got a concussion 2 years ago when I blacked out, fell, hit my head on the tile. Don't know how long I was out. It's gotten a bit better than the horrible first 6 months, but I STILL suffer from: dizziness, loss of balance, headaches, pixelated vision, and tiredness fast, all of which get a lot worse the more tired/exhausted I am, and, in the times it gets worse, foggy brain, loss of words including some basic words, dyslexia when I type, etc. Oh, and increased and severe depression.

When I went to the brain injury clinic at a hospital in Toronto (after waiting 7 months) they said there was nothing they could do except physio to get me *used to* the dizziness. I didn't want to just get used to it, i wanted to get better. I felt hopeless, so...I didn't do it. Now I'm wondering if I should have. But it still wouldn't have addressed all my symptoms.

I recently asked my dr to get me a second opinion with another neurologist. He dismissed me--at two different appointments. So i went to emerg (my symptoms have been getting worse including some new ones), now have a referral. But at emerg they dd another CAT scan, and said it still looks the same, they can't see anything.

I'm so frustrated! And I've been feeling so hopeless. This is really, really interfering with my life. So I've been looking into some alternative medicine.

I'm wondering--has anyone tried Cranial Adjustments? Has it helped?

Also, hyberbaric oxygen therapy? Has it helped? (Ontariobot . ca )


And also various supplements? I figure those at least can't hurt, and I can afford some and some may help.

*edit*

So, er--has anyone else tried alternative medicine and had any success? What things have helped you?

Take care,
Cheryl

[Mark in Idaho]

CherylR,

Welcome to NeuroTalk. You are among friends who will not discount your symptoms.

Your symptoms sound normal for PCS. Many of us have the same symptoms.

Every conceivable treatment, whether mainstream or alternative have been tried and discussed by someone here.

The common therapy to most of us is nutritional. The concussed brain needs additional nutrition to detoxify and heal to whatever level of recovery that is possible.

The standards are: B-12, 500 to 1000 mcgs daily, a B-50 complex, Omega's, magnesium, calcium, all of the anti-oxidants, and avoid caffeine, alcohol, MSG, intense sugars, artificial sweeteners (aspartame is the worst).

For meat eaters, pork is a good source of amino acids.

The Cranial Sacral Therapy has been tried. The skull plate plate part of CST is of no benefit. The spinal manipulations can be helpful.

A common problem with PCS is an undiagnosed and untreated upper neck injury. This can cause a myriad of problems as the inflammation can alter blood flow to the brain and brain stem and cause muscle spasms, especially the muscles the connect to the skull behind the ears.

Some have had success with Upper Cervical Chiropractic therapy (NUCCA.org). Some Physical Therapists have skills to use gentle traction and manipulation to treat the upper cervical injury. This can take quite some time to get improvement.

Did you seek any medical care right away? Any idea why you blacked out? Or, did you fall and have amnesia about the moment just before the fall?

Some claim to benefit from HBOT but it takes 40 to 80 treatments.

It also helps to make lifestyle changes to lower everyday stimulation levels.

Regarding your dizziness, have you tried the Epley Maneuver? It can help if the dizziness is caused by loose particles in the inner ear. You can even watch a YouTube video of the maneuver.

Tell us more about your symptoms. Plenty of people here have lots of ways to help tolerate or work-around many PCS symptoms.

My best to you.

[nightnurse30]

I had very similar issues as you and when i started doing Healing Touch and acupuncture, I improved very quickly and now am completely symptom free. Healing Touch is an energy based therapy that involves balancing our energy fields and opening any congestion so that our bodies have a better ability to heal. After treatments, my headaches diminished, I would feel better relaxation, less pain, less anxiety, and would have wonderful nights of sleep. I took a class to learn how to do it on myself and started doing treatments on myself nightly.

You can find a practitioner in your area at www.healingtouchinternational.org. Most practitioners are nurses who have been through a rigorous training program to help their patients. I am currently a Healing Touch Practitioner Apprentice in my 1 year mentorship. My brain injury was a year ago and I have never been healthier, happier, pain free and thankful for my brain injury for bringing Healing Touch into my life. Try it out, you will love it!

[CherylR]

Mark, thank you so much for your response, and for being so specific! After 2 years of this, and no real help from medical world, I've been feeling pretty desperate. Also, I'm a severe abuse & torture survivor, and so I'm used to enduring and trying to ignore my body, which is what I tried to do for those two years after they told me they couldn't do anything. But I've really been noticing how much this affects me.

I keep cancelling meetings with friends because I'm too dizzy, headachey, exhausted, or depressed, or all of those. I keep getting severely depressed often; it's dramatically increased since my concussion. (I used to get depressed on/off from the abuse/torture and PTSD, but I've been realizing how much worse it is now--especially when I have a lot of good in my life and had been feeling happier than I'd ever been before the concussion.)

I don't know for sure why I blacked out--the drs couldn't find a reason--but it happened for me three times (the concussion was the third time). The first, I had a friend catch me (or I would have gone down stairs), and the second a friend was also with me. I think now it might have been the metformin I was on (I was pre-diabetes). I'd gotten my weight and sugar down at that point... (weight now being back up after not being able to exercise in so long, and emotional eating the first 6 months).

I am vegetarian, and I'm trying to eat very healthy (following Perfect 10 diet). Low-ish carbs, lots of vegetables and fresh food, regular-fat dairy, no artificial crap (I wish I'd never listened to the dietician about sucralose being an alternative; i had way too much for about two years), organic when I can afford (which isn't often), and some supplements. Though I can't always stick to that completely. I try to take flax oil which has the omegas in it, coral calcium (helps with oxygenation and also my depression). I don't drink coffee or alcohol, don't smoke. BUT for a while i was taking a lot of sucralose through food (No more!) My weakness is carbs and sugar. Trying to have fruit and dark chocolate when I give in (for sweets).

I so appreciate your mentioning specific supplements and amounts; thank you!

I tried a number of cranial sacral treatments. There may have been a very slight help, I *think* I felt a little bit better. This was early on, maybe the first 6-8 months. IT was expensive... and money is tight. BUT my health is important to me, and if I can find something that helps, I want to go for it. (But I also don't want to throw my money away.)

But I was talking about cranial adjustments. When I searched alternative therapy for post-concussive, it's one of the first things that popped up, AND the guy I found (Dr Roger Turner) has treated a number of NHL players with concussions successfully. I asked him in an email, and he said he's never had someone with a concussion that he "hasn't been able to help considerably." So I'm still really considering that as an option. It's like a chiropractor but for the head...

HBOT was interesting to me, but 40-80 treatments? That must be so expensive. (sighing)

That's interesting to me about the neck. My neck and jaw frequently feel too tight and (I know I shouldn't but) I crack them--I turn my head and it relieves the pressure a bit.

I did seek medical care immediately--upon finding I was lying on the floor with no idea how I got there; I don't remember falling at all--and then again when the dizziness, loss of balance, headaches started a week later. That's when they said post-concussive. Also, since i'm a severe abuse survivor and it's such a familiar feeling, I have a feeling I probably had a number of concussions as a child. But of course there are no medical records to prove that.

I have been noticing that when I overwork, or put on an event, or even go to an event, I get hit with higher, harder levels of dizziness (to the point where I'm lying down a lot and it feels like the bed is moving), headaches, loss of balance, loss of words, foggy brain (I feel like I'm thinking through molasses when it's really bad), way increased depression, etc, from a few days to a few weeks. This is my second or third week of that after going to line dancing class (where we moved very slowly) AND going to a friend's book launch. I feel like I'm not living my life, what with missing so many meetings with friends, so many work-related meetings (I'm self-employed), and not being able to do so many things.

Plus my doctor dismissing me, not being of help. I do have a neurologist appointment now for a second opinion, but he told my dr he couldn't see anything in the CAT scan and doesn't think he can help me. Argh.

thanks so much for your reply and support; I so appreciate it!

Cheryl

[CherylR]

Nightnurse, I love that you're open to alternative therapy! Healing Touch and acupuncture sound like real possibilities. I haven't tried either (unless Cranial Sacral counts, I think it's like healing touch). Thanks so much for the link on where to find a practitioner; I'm going to look into that. And that was smart to teach healing touch to yourself! It helps me feel a little bit hopeful to hear that it helped you. Thank you!

[EsthersDoll]

Welcome to neurotalk! I hope we can help you find some ways to cope with or overcome what you are having to deal with.

In addition to the supplements Mark mentioned, I also take BCAA's because there is research about it being able to help people recover from concussions being conducted. And I take Acetyl L- Carnitine based on advice I received from this forum. My acupuncturist advised me to start taking CDP Choline, Phosphatydlserine and D-Ribose and my neurologist agreed that they were all a good idea.

My neurologist recommended that I get daily shots of B12 because that B vitamin is most important when recovering from a brain injury. (She also recommends taking a good B Complex.) Since I can't get daily shots (no one in my household can administer them to me and I'm not allowed to give them to myself) she recommended that I take B12 sublingually, which I do.

I have also benefitted from energy healing. There are many different kinds out there. Healing Touch in particular is often covered by insurance companies these days. I'm an energy healer and I know countless energy healers and I've been getting energy healings continuously since the accident I was in.

I benefited from speech therapy. I was having a lot of speech issues and I still am, but a lot of speech therapy is designed for treatment of cognitive issues and I found that it helped improve my speech and cognitive functioning - such as word finding, wrong words being used, etc.. If I could get a ride, I would still be going. My speech therapist recommended that I do crosswords at home which I do. And to remember to use diaphragmatic breathing to help increase oxygen to the brain.

Light exercise, like short/gentle walks, yoga, chi gong or tai chi might help give your brain more oxygen to help it to continue to heal itself as well. A lot of "concussion clinics" slowly increase a person's activity levels but only do so when they experience no symptoms - so if you experience dizziness from walking around the block, walk only half of that for a few weeks and then increase it only if you don't experience dizziness when walking.

I also see a behavioral therapist who understands what a serious injury can do to a person's life. I was looking for someone who specialized in brain injury, but the ones in my area were all overbooked. I find a great deal of relief talking with her once a week about the challenges I face everyday as a result of one concussion that I sustained almost two years ago.

I was doing acupuncture for several months and although it did reduce the pain I was experiencing, I didn't find any other benefits from it, and it was very expensive so I stopped getting the treatments. The pain I was in when I started greatly reduced with the help of it and some physical therapy.

I'm currently going through a treatment called The Bowen Technique and I've found that it's helped me quite a bit. The idea behind it is that the practitioner manipulates the patient's body in a way that then allows the body to heal itself. Only a limited amount of treatments are given, and it depends on the level of trauma the body has received. I am going to get my fourth treatment this Friday and I think that one or the fifth will be the last one I will need to get. It has improved the feeling of my body a significant amount and that has improved my mood a great deal as well.

After the accident I was in, I got VERY dizzy and even experienced vertigo on a few occasions. It was awful. I still experience dizziness and a swimmy feeling in my head. It is most uncomfortable and disconcerting. It keeps me from being more active and I dislike it. But it has improved since it first began. I'm hopeful, that someday it will go away entirely.

One member here, Ewoyn, recommended something called Vision Therapy after she went through it herself. It's supposed to help people who have suffered a concussion realign their eye functioning with their brains. All those nerves are very delicate and easily damaged with a concussion. Most doctors believe that those things will fix themselves in time, and maybe they will, but after two years why not get a little push with some vision therapy? I recently read in a book called "Brainlash" that it helped the author who has a PHD and had to recover from an mTBI that it helped her a great deal to reduce the fatigue and dizziness she was experiencing. If I remember correctly, she didn't start it until years after the injury she sustained too. I've had a lot of weird vision phenomena since the accident I was in and I plan on scheduling an evaluation as soon as I'm done with the Bowen Therapy. Maybe it can help you with the pixilated vision you are experiencing?

[CherylR]

EsthersDoll, thank you so much for all that info! I have written them down.

I can't afford to get a lot of extra stuff right now--money is super tight--but I did get the B 12 sublingual--thank you!-and have been taking it every day. I will try to get a few more of these things.

I *think* I did healing touch--I had cranial sacral done many times after the concussion. It helped a tiny bit, not much, and it was very expensive. i don't have the money right now for anything.

My big hope right now is the cranial adjustments (chiropractor) since the guy has a huge section on his website about post-concussion and has helped NHL players. But i can't afford that right now, either--that will be about $1000.

Meanwhile, I'm going to add in as many supplements as I can that you all have mentioned, as I can.

I walk my dog every morning, and I walk sloooowly. I was wondering why i walked so slowly--i'm used to walking quickly--but i've been realizing when i walk fast, I get headaches, and i also start getting dizzy faster. But part way through my walk with my dog i'm always dizzy. But she has so much fun out there, so i still take her on a long morning walk....

I've heard of the Bowen treatment years ago, and had forgotten about it. That's something else I could look into, too... later, when I have more money again. I'd love to hear your experiences with it.

Sorry for the delay in responding. I went to the second (or third?) neurologist on Wed, and he told me he couldn't help me. He said the specialist he would have referred me to is the one I already saw, AND i've been to the head injury clinic (where they told me that all they could do was physio to get me used to the dizziness, and that just sounded so...hopeless to me.)

I broke into tears in his office, asked wasn't there ANYTHING that could help, any alternative therapy or anything, and he said not that he knew of. I got SO depressed for a bit after that, plus i've been working crazy hard on my writing for a deadline...which makes me so much more dizzy, working so hard. I finished today and am trying to just rest and rest.

But I got a call that they had scheduled a MRI for me. Is there any point in my going? Will it help? I don't have much faith in the medical system right now.

[Mark in Idaho]

CherylR,

There is very little chance the MRI will help. There is a very rare chance that it can show a problem in your inner ear but your dizziness is so common to PCS that I doubt it will show anything.

Have you checked out the Epley Maneuver video on YouTube? Maybe you can do the Epley at home and get some relief from your dizziness.

As the neuros said, there is not much that they can do to speed up your recovery.

Rest, quiet, and good nutrition are your best bets. But, seriously consider the Epley, even at home, to see if it will help with your dizziness.

My best to you.

[Cjm028]

Cheryl email me my email address is in my public profile

[EsthersDoll]

Hi Cheryl,

I was just evaluated for vision therapy and I'm a good candidate for receiving vision therapy. There is something wrong with they way my eyes are trying to work together and they are overcompensating for the slowness of my brain's processing speed. I'm hopeful that it will help reduce the dizziness that I experience and increase my energy levels.

Neither my health insurance or vision insurance cover the treatment. It's expensive and I'll be paying out of pocket for the treatment.

I do think the Bowen Technique helped me to recover. Since I started it I'm feeling significantly better physically and emotionally. But I think this vision therapy will help me too.

Sending you lots of good vibes!