PCS, Chronic Headaches, New to Neurotalk
 

Hello All!
I'm new to neurotalk but I'm looking for some support and potential guidance for my PCS symptoms. I had a "mild" TBI last July, with a loss of consciousness for over 30 min and 5 contusions.

I struggle with headaches, ranging from constant low-grade to full blown, nausea ridden migraines. They worsen with stress, over-stimulation, low caloric intake and fatigue.

I have noticed that post TBI, I need to eat more and at more regular intervals. Has anyone else noticed this?

Also, my headaches will "come and go" sort of. I may have a week or two with only a low-grade headache maybe 2-3 days out of the week. This would be a good week. This is followed by a period of two-three weeks of constant lowgrade headaches and migraines at least 2x a week, possibly up to 5x. This cycle is ongoing. Does anyone else experience this?

In addition to my headaches, I struggle with fatigue, mood swings, low libido, difficulty concentrating, tangential thinking and other cognitive difficulties. I practice yoga regularly, eat very well, have tried acupuncture, craneosacral therapy, and talk therapy with a TBI specialist. I am thinking of turning down the medication route, because nothing else seems to be helping and I am feeling so rundown and frustrated. Any input on meds, side effects, headaches, recovery time, living with TBI in your early 20's, living in fear of reinjury etc. would be appreciated.

Sending love, light, and healing.

adelaide,

Welcome to NeuroTalk. Sorry to hear of your TBI. Sounds rough.

Fortunately, you are in a great place for good TBI care. There are some very good neuros in and around Boston. What neuros have you been treated by?

Other than the cranio-sacral and talk therapy, what specifically have you been doing to help with your recovery? Are you working full time? Do you have a busy household? What nutritional steps are you following?

I and others have lots to offer but it helps to understand where you are presently.

My best to you.

Hey,

I had a concussion in a ski accident at 23, which followed previous concussions through sport and as child, so can offer some thoughts on living with TBI in early twenties and fear of re-injury.

There is potentially a positive at it happening at that age as your brain is perhaps better placed to recover in your early twenties, than if you are either older or much younger. Not that there is an ideal age for having a TBI.

Psychologically, I think it can be particularly difficult to accept. A clinical psychologist I saw after the concussion noted that older people often can be more philosophical about injury of any kind, because they may have fulfilled more life goals and are less anxious generally about how life might turn out/ more experienced at dealing with the unexpected. Early twenties, with or without TBI can be uncertain e.g. starting a career and wondering where it will go.

I did recover significantly, but I found myself comparing myself too soon and too harshly to what I was like pre-accident. I think I slightly romanticised what I was like before, and what I would been had I not been injured.

This made me more anxious about the injury/ made it seem more catastrophic.

It helped me not to compare myself to anyone. To think of myself on my own path, and if it was harder than someone else's/ friends, or more difficult than planned, then so be it.

At work, single tasking helped to prevent becoming over whelmed.

I did have a constant fear of re-injury, which was quite compulsive. The anxiety became very severe and irrational at times, but I think the source of it is rational- you're obviously going to be anxious about something, which has caused so much damage.

That said, I don't think anxiety made me any safer. Probably the opposite.

I read up about accident prevention, and found it useful to slow down.

This article I thought was good:

http://www.yalemedicalgroup.org/stw/...geID=STW000431

I still get anxious about hitting my head, which can be time consuming.

I know it doesn't help my state of mind or safety, so still working on it.

I am not sure if fully recovered. Or if I am, whether believe it.

Hope, with time, that the hardest part is behind you and you feel better soon! :)

P.s. I think elsewhere on here, there are links to some really helpful books- better than the above! There is a also new book out by James Cracknell- Touching Distance, which looks interesting and may have some good insight.

A lot of books are more stressful than helpful. The recommendation of quiet rest would not include reading most books, even those with positive outcomes. The long and struggling recoveries create too many images that can lead to more anxieties.

I recommend only reading information that helps those with PCS learn to understand their symptoms and how to move forward.

Otherwise, reading should be intended for light stimulation or maybe just enough to maintain any ongoing school studies.

Thank you both for your input.
In regards to your question Mark, I have tried acupuncture, and really working to clean up a previously clean diet. I kept a food journal, working with a nutritionist to try to see any correlations between food and my headaches. Apples, gluten, processed sugars and wine are the first that jump to mind, but also just allowing even a mild drop in my blood sugar can result in headaches and melancholic feelings. I also meditate and practice yoga, which sometimes eases my headaches and anxiety and has helped with my gamut of bodily injuries that occurred from the accident as well. I sleep a lot, at least twice as before, and try actively not to become overwhelmed. I do work almost full time, 35ish hours a week, and this zaps much of my energy, but I try to be quiet a lot of the time. However, as a very high energy person, I become depressed and despondent without physical activity, which poses a constant battle of balance.

In Boston I've worked with DR. Cho-Park, a neurologist at BWH with moderate success. Also my Neuro-psychologist is Dr. Meghan Searl, moderately pleased. My talk therapist who specializes in brain injury is incredible, Paula Morgan Johnson, and I have high hopes for my new TBI Physiatrist, Dr. Seth Herman at the Spalding Rehab Hospital. My intregrative PCP, Dr. Caren Eliezer is also good. When I list all of them, I realize I am very lucky to be surrounded by such good care, even if it has taken me a year to build this team.

Xander, More to you shortly!

adelaide,

Your list of doctors is surprisingly large and intense for an mTBI. Were you hospitalized? Was it termed an mTBI due to the 30 minutes of LOC or did you have other injuries besides the contusions ? Did you have a lower than expected GSC after regaining consciousness? What symptoms did you have in the first few days?

Your neuro, neuro-psych, and physiatrist are all rather young. I wonder if you are being over treated. Is your insurance so good that you are a cash cow for these professionals?

What are they doing for you?
Have any prescribed low dose amitriptyline (10 to 25 mgs) for your head aches? How is your neck? Neck injuries are often overlooked. A physiatrist may be able to help with an upper neck injury that can cause head aches.

The important part of recovery is quiet rest. Activity can be a big part of your head aches. And low glucose can be a problem. Have you tried a slow absorption food like Glucerna? Also, coconut oil is a great fat to have in your diet. It provides MCT's (medium chain triglycerides) that help a brain that is struggling with glucose metabolism. Look up MCT oil online.

My favorite mTBI/concussions neuro is in Concord, Mass. Dr Robert Cantu is the grandfather of mTBI/concussions in Massachusetts if not the US. I don't know if there is any value to a second consult since you already have so many medical records piling up.

His office may have a referral to a head injury head ache specialist in Boston. It sounds like that is your biggest need.

Hope you find some relief.

My best to you.