Hi everyone,

I have had post-concussion syndrome for over two years and began hyperbaric oxygen therapy just under a month ago. I have never posted here before, but I have had a good experience with HBOT and wanted to share my observations with others.

I was motivated to try HBOT after I took a vacation at high altitude and noticed that my symptoms got worse and worse the week I was there. Since many of them mimic altitude sickness (e.g. dizziness, nausea, headaches) I decided to try taking compressed oxygen, which stores at our resort were touting for that condition. To my extreme surprise, the oxygen made me feel a little bit better.

Heartened by this experience, I began researching HBOT and discovered that the U.S. military is currently conducting Phase II clinical trials of the use of HBOT for PCS:

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No data are yet available from these studies, but I was impressed that the treatment is being explored in Phase II trials. Phase II studies typically involve 100-300 people and are done after pilot or Phase I studies suggest the treatment may be useful. There have already been anecdotal reports of HBOT helping PCS patients, **

I decided I wanted to give HBOT a try. Fortunately, my neurologist was receptive (something that really surprised me, as he is typically very conservative) although he admitted there are not yet good data on it. However, it would have been easy for me to get treatment from an independent center without his approval - the place I am using did not even require a referral from a doctor.

Most places that take insurance will not accept PCS as patients because the treatment is off-label. Even when I offered to pay myself, none of the hospitals or wound care centers in my area would take me. Still, there are independent HBOT centers that will treat pretty much anyone. I am receiving HBOT at a mom-and-pop operation that charges me $150 per treatment.

I have had 12 treatments over the last 3.5 weeks, going 3-4 times each week. I would like to go more frequently (the protocol in most of the studies is to go every day), but my schedule has not permitted it. I am currently receiving treatment at 1.5 atm, although the tech would like to bump it up to 1.75 atm soon. Each treatment consists of one hour on oxygen, plus 10-15 minutes at the beginning and the end to pressurize and depressurize the chamber.

So far, I have made steady - though not spectacular - progress. Before I began treatment, I was feeling so bad I could barely leave home or take care of myself. I would not have been able to write this post because it was difficult to focus. I struggled even to make myself meals. Now, I have periods where I feel well enough to work on my computer (usually <1 hour at a time), take walks outside, and do light housework.

It is a bit difficult to tell how much of this improvement I should attribute to the oxygen. For the past two years, I have cycled between feeling okay and feeling terrible. Typically, I make slow, almost imperceptible improvement from week to week, but this progress is easily derailed by the smallest stressors - bumping my head lightly, being in a loud/noisy place for too long, getting my heart rate up for any length of time, even just dealing with a stressful situation. After one of these setbacks, it takes me months just to barely function again, but I do improve. So it's hard to say how much of my recent improvement is thanks to HBOT and how much is thanks to time.

Still, I do think HBOT helps. The sessions clear my brain fog and give me energy in a way that just lying down and resting does not. Typically, at the beginning of a session I will be a bit drowsy and want to close my eyes. Halfway through, I feel much more alert and cannot keep my eyes closed. My mind becomes more active, though I try to focus on just breathing in and out. I have more energy in the afternoons after my treatment than in the mornings before I go.

These effects can be short-lived depending on how ambitious I am with my activities after treatment. Even just riding in a car to and from the center can wipe out the effects, especially if it is sunny out. I wear sunglasses and try to avoid looking out the window.

Sometimes I feel dizzy when I first exit the chamber, especially if I have taken a few days off. I try to sit up towards the end of my sessions to avoid this. Dizziness has become less of a problem for me over time.

The first time I went, I actually felt terrible afterwards and had to sleep for the rest of the day. I haven't had that problem since.

In addition to the acute effects of the oxygen, which I do think are real, HBOT could also be helping me in other ways.

Part of the improvement could be due to the placebo effect - I have tried numerous drugs and other therapies, but this is the only thing that I really believe has worked. It has been disheartening to have a condition with no proven cures, and it is great to feel like I am actually doing something to get better. Even if 100% of my improvement were due to the placebo effect, I would continue going. At the end of the day all I care about is that I get better, and if the placebo effect helps me do it faster, then I am all for it!

Part of the improvement could also be from the fact that HBOT forces me to do absolutely nothing for about 1.5 hours each day. Most of the time, it is hard for me to have the discipline to do this unless I am actually sleepy and want to nap.

Additionally, while I am on oxygen (1 hour) the breathing apparatus makes noise when I inhale and exhale, making it difficult to focus on anything other than my breath. Since focusing on the breath is a tenet of many meditation practices, I wonder if this experience is teaching me a mild form of meditation. Outside of HBOT, I am now able to relax and focus on my breath for much longer periods than I ever could before. This helps me rest and recover more quickly when I am feeling bad.

So, to summarize:
- HBOT 3-4x/week for 1 hr @ 1.5 atm. 12 treatments so far.
- Costs me $150/treatment
- Acute improvement during the treatment itself: feel more energetic and focused
- Occasional dizziness on exit from chamber; has decreased with time
- Long-term improvement may or may not be due to HBOT
- Even if HBOT itself is not helping, placebo effect and learning to relax are positive side effects

I am happy to answer any questions that anyone has about my experience. I consider myself fortunate to have the means to experiment with this while it is still unproven, and I want to help others who are deciding whether or not it is worth it to spend the money.

Right now, my recommendation would be to try HBOT if doing so will not create new sources of stress for you, since these can wipe out your progress. Try to go as often as possible and don't expect any miracles. The tech at my center says it often takes 10 sessions before people start noticing any changes.

I hope to update this thread after I have more treatments with information about my progress, or lack thereof. Best of luck to everyone!