How to Manage PTSD Symptoms and Get Your Life Back
It was time for lunch. She knew the city better than I did, and she had a nicer car, so we decided she would drive to the restaurant. That put me in the passenger seat as I anticipated both the Thai Green Curry and some good conversation over what was going to be an extended lunch break.
Just a few blocks from the office, we were stopped at a red light. Nothing special, except that I was looking down into the centre console for her parking pass so we could get a free parking spot when we arrived. This was her territory so she knew where she was going.
She screamed out, “What the hell was that?”
I looked up slowly, feeling a bit dizzy. “I would say we just got hit.”
She twisted around to look behind, and I guess I must have, too. There was a truck there, alright, much closer than it should be.
And that was how a decision to go out for lunch changed my life, forever.
A trip to the ER for a quick checkup and we were released within just a few hours. They kept me a bit longer since the ambulance attendant had considered me “altered” and gave me a Glascow Coma Score of 13. Mostly I was “just confused”. I was sent away to “rest and take ibuprofen” and see my family doctor as soon as possible.
The headaches and vomiting started the next morning. I was sore over every inch of my body and it did not get better over time. I found I could sleep and feel better in the mornings, but after I was up for a few hours I was back to having terrible headaches and throwing up again.
Soon enough the doctors (and lawyers) got involved.
Every doctor seemed to think I had whatever was their expertise. Ever hear the saying, “When the only tool you have is a hammer, everything starts to look like a nail”? Well, that was my life at the time. They all had their particular (medical) hammer, so they all diagnosed me based on that.
It may seem strange, but the first diagnosis was PTSD. It wasn’t until 2 years after the accident that anyone used the word “concussion” or “migraine” or “traumatic brain injury” (mTBI). Then different doctors started diagnosing me with things like “mTBI” and “Post Concussion Syndrome”, “Post Traumatic Migraines” and even one psychiatrist for the lawyer on the other side called it a “Conversion Disorder”.
Here’s the list of my symptoms.
- Neck and back pain
- Nausea – Vomiting
- Mental Confusion
- Excessive Hunger
- Startled Easily (Hyperarousal)
- Strong aversion to the colour silver (which they all thought was a PTSD type of avoidance as a psychological response to the colour of her car but was really about how the light shines off of silver things and the glare hurts my eyes)
- Re-experiencing the accident over and over and over… trying to put together details
- Depressive symptoms, especially crying (in particular situations especially under fluorescent lights)
- Hatred for fluorescent, LED and bright light sources
- Sensitivity to smells, especially chemicals
- Sensitivity to sound, especially repetitive sound (like running water, motors, engines) and loud or sudden noises
At the time, my lawyers had me seeing a psychologist who specialised in PTSD. I was seeing the other regular medical type doctors for treatments and assessments, too. It was this psychologist who helped me the most to see the patterns and manage my symptoms.
This is how I got my life back.
There’s PTSD psychological type triggers and then there are neurological triggers. Right now I am talking about the neurological triggers.
PTSD symptoms are worse when sufferers are exposed to:
- Fluorescent lights
- LED lights
- Food additives such as aspartame and MSG
- Noises, both sudden and rumbling (think motors and engines)
- Odours – Chemical smells and anything artificial. Natural aromas are often fine.
Once I discovered my sensitivity to these triggers I had to decide what to do. For me, the effects of these triggers is so “exquisite” (a word used by one of my neurologists) that I don’t really have the choice to expose myself and then “damn the consequences” and just deal with the fallout.
Other people I know can do that.
They can decide to go to a grocery store, and although they do not feel well in the store, and they often find they are confused when they are there, they are willing to deal with the headache, nausea or excessive fatigue they feel as a natural consequence of their trip to buy food.
I can not. I step one foot into the store and I vomit on my own (or someone else’s) shoes.
If you are dealing with less exquisite symptoms it may not be so obvious to you what adds up to take you over the edge.
You may attribute your extreme anxiety in the doctor’s office to the white coats, when in fact it may be about (at least partially) the fact you are sitting under huge banks of fluorescent lights.
You may find that your excessive hunger and inability to stop eating is not some bad habit from your childhood. In fact, it could be a neurological response to the smell of the cleaner you used to scrub the bathroom walls.
You may wonder why you get up in the morning reasonably refreshed, but after brushing your teeth with an electric toothbrush (see noises), and commercial toothpaste (see aspartame) and having a shower (see noises) you are ready for a nap.
It takes some time to analyse what triggers you are dealing with, usually because you are surrounded by them all the time and they are impossible to discern individually.
Start with this list:
Fluorescent – the long skinny ones and the curly bulbs and anything else that says CFL (compact fluorescent lightbulb).
LED – there is significant evidence that LED lights are bad for eyes (so say the vision therapists and eye doctors) but they make things look pretty and they save energy so they are everywhere.
Bright – Any unprotected bulb, light shining straight in your face or anything just… bright.
Flashing – the sun as it shines through the trees as you drive down the road, movies scenes where they flash guns and explosions, police and ambulance flashers.
Repetitive – Running water (from the tap, shower, washing machine, creek or waterfall), motors (washing machine and dryer, fridge, dishwasher, fan, furnace, lawn mowers, etc), engines (car, truck, diesel is worst, chain saws, weed whackers, saws, or anything that uses gas)
Sudden – Sharp noises such as dogs barking, banging, hammering, anything dropping on the floor especially if it breaks.
Loud – Even if the noise is not loud to someone else it may be to you. Smoke alarms and car alarms are the worst!
For example, the fridge noise. When I am in the same room with a refrigerator that is running I feel much the same as I used to when a smoke alarm would go off. I’m sure you know that feeling. You get agitated, can’t sit still, feel overwhelmed and you are driven to make the sound STOP.
What doesn’t happen to people without PTSD or brain injuries is that once the noise stops they can shake it off. Those of us with PTSD and brain injuries have both physical symptoms (see list above) and emotional symptoms, like anxiety, that last sometimes for days or even weeks.
If I was in a room with a smoke alarm now for 30 seconds, I would not expect to recover fully for up to 3 weeks. So, I avoid places where that might happen.
Are Triggers Phobias?
Avoiding triggers is one specific way to make a difference in our symptoms. There’s more than one doctor though who will tell you that you need to treat your PTSD symptoms like they are phobias. I can tell you as a phobia expert, that they are not.
How am I a phobia expert, you ask? Well for 25 years I taught people to overcome the fear of public speaking. Public speaking is the only socially acceptable phobia. But that is exactly what it is.
So, I know exactly how to overcome a phobia.
Repeated, increasingly difficult, exposures to the source of the phobia are necessary. The issue is that each exposure must be SUCCESSFUL. That is possible with public speaking, and pretty much impossible with PTSD and brain injuries.
So, anyone who tells you that if you have trouble with fluorescent lights (for example) and that therefore you should spend increasing amounts of time under them, is just wrong.
One of my (many) neurologists explained it this way. “Imagine that in your brain you have a pathway that takes you from the trigger straight to the symptoms. Every time you expose yourself to those triggers you are wearing the pathway deeper and deeper. Over time, the pathway is so well worn that even the tiniest exposure will create symptoms.” In fact, it is common that 20 or so years after a PTSD event or brain injury the previously stable patient has what is described as an “unexplained neurological event” because the brain has had additional damage. This can be sudden onset grand mal seizures, POTS, fibromyalgia, or spinal cord injury symptoms that appear to have no cause, except that they are in already neurologically compromised individuals.
As a result of this advice, and the nature of my “exquisite” symptoms, I decided to eliminate my triggers, whereas others tend to just minimise or avoid them. Even with the decision to eliminate triggers, I still deal with accidental exposures that do give me symptoms. These symptoms (after a dozen years) are now somewhat less exquisite, and I recover more quickly.
Avoiding triggers is important, but there are several other treatments that can help PTSD and brain injury (mTBI) survivors.
I have tried a lot. A real lot. Here are some I have tried and how much I feel they have helped. Remember, I still have to avoid my triggers, so nothing cured me.
Anti-depressants – It is very common for neurologically atypical patients such as those with PTSD or mTBI to be prescribed anti-depressants. Sometimes they even help. They did nothing for me, except make me sicker. I acted depressed, I admit that. I did a lot of crying in front of doctors (under the lights) and I even had an actual depressing situation to deal with. My job and my life were all messed up. I couldn’t so much as leave my bedroom without terrible symptoms (there was a fluorescent light in the kitchen and a very loud fridge and freezer!). I spent a lot of time throwing up and dealing with a migraine that my doctor initially described as “just a headache” and as “inconvenient”. So, if you find the anti-depressants help, great. If not, know you are not alone.
Gabapentin / Lyrica – Also a very common medication to prescribe initially. They are described as being prescribed for partial seizures and spinal cord injuries. I should have realized that my doctor who seemed to be brushing me off emotionally was taking me seriously when I was prescribed these medications. Basically, they helped some, but when I took them I was not completely eliminating my triggers so the results were not sufficient to say they helped enough. In addition, the weight gain was incredible! I was easily gaining 2 to 3 lbs a week on these meds, with no change in diet. You may find these help.
Vitamin B12 Methylcobalamin – MeCbl was by far the most effective treatment for me. As long ago as 1999 there were studies that suggested that this might be the case. Back 20 years ago it was called a breakthrough for neurological disease, and yet it is still not in common use today. It has been tested as significant in brain atrophy in the elderly, but of course that is not what a PTSD or mTBI survivor is dealing with.
The Institute of Neurosciences, The Fourth Military Medical University, Xi’an 710032, China has been researching Methylcobalamin (MeCbl), which is simply the activated form of vitamin B12. They have seen previous uses as a treatment for nutritional diseases plus neurological disorders such as rheumatoid arthritis and Alzheimer’s disease.
Methylcobalamin protects neurons by promoting the regeneration of nerves that have been injured, while antagonizing the toxicity that has been induced by the excessive glutamate, especially in the brain. The questions they are asking have to do with if MeCbl will work as an actual pain killer.
They have found exactly what I experienced for myself. The MeCbl alleviated pain in diabetic neuropathy, neuralgia and low back pain in their studies. The nerve conduction was improved and injured nerves were repaired. My experience was that my chronic back pain from the accident was reduced, and eliminated eventually. My “exquisite” triggering was minimised some. I started to sleep after a few months, and felt rested with less fatigue, both mental and physical.
I was taking high doses of methylcobalamin every day. I took 40,000mcg daily at a minimum and would increase the dose if I felt I had been triggered. I watched for symptoms like dizziness or heartburn, which seem to be my initial aura symptoms. These high doses were based on research I had seen done in Japan conducted more than 25 years ago.
When I asked my doctors, of all types, about taking the Vitamin B12 methylcobalamin, not one (even my naturopathic physician) was familiar with the studies at the time. They all said exactly the same thing when I asked if I should take it though. “It can’t hurt”.
Well, it didn’t hurt, and it helped more than anything else.
Botox for Migraines – Another treatment I tried was Botox for migraines. I’ll say right off, it did help some. It didn’t make it so I could just “have a life”, as I still had to avoid my triggers. What it did do was make it so that when I was not specifically triggered I felt some better. It also made it so when I was exposed to a trigger it would take more to create symptoms, and those symptoms would not last as long.
The treatment was expensive. I had excellent medical insurance coverage in Canada so I didn’t end up paying much out of pocket, but that is a consideration for some people in many parts of the world. My treatments would have been about $1,500 US every 3 months if I did not have medical insurance.
HBOT, or Hyperbaric Oxygen Therapy is another treatment that I underwent. Research shows it is especially helpful for PTSD associated with mTBI. HBOT is a simple, non-invasive and painless treatment that enhances your body’s natural healing process. Basically you inhale 100% oxygen in a pressurised total body chamber. This is the same treatment system used for divers with “the bends” or decompression sickness. MPR magazine reported the reduction in symptoms of PTSD and mTBI based on research. Finally by 2017, somewhat after I took my treatments, the VA in the United States decided to provide HBOT treatments for some veterans with chronic PTSD.
I had 40 HBOT sessions, 2 or 3 a week over several weeks. The important thing about HBOT is that it doesn’t matter how long ago the injury to the brain was. The fact that the injury hasn’t healed is the critical factor. By providing the injury site with huge amounts of oxygen, any cells that can be healed, will be healed. It is therefore important to complete the entire 40 sessions, or however many are recommended by your HBOT healthcare provider.
There are other treatments such as chiropractic, massage, acupuncture and anti- convulsants that have helped me some. I suspect these are more readily available and more widely known so I have not described them here. If you have not tried these other treatments, do so.
There is no way to know how much healing is possible from a neurological and/or psychological injury like PTSD or mTBI. There is also no way to know which treatment will be key. Keep taking another step toward recovery. It is worth it.
This article is based on the real-life experiences of Joan, a Toronto, Canada based resident.