I'm now 57 and have worked as a clergy person and psychotherapist and hospice chaplain. Now I'm taking care of my wife who has multiple issues.

I'm trying to figure out how much of my present issues are from concussions and how many are from my pituitary, which is now ceased functioning in any sensible way.

Here's my concussion history: At 11 months old, I went out of my crib onto my head and permanently bent my skull (it was probably fractured) and lost consciousness for 90 minutes. My mother carried me around until I woke up. This was untreated.

At 3 years old I was sitting on the front seat of the car, facing backwards. They didn't have seat belts or car seats in 1955. We were stopped at a light and someone plowed into the back of our car, sending me into the instrument panel hitting the back of my head. Not treated.

At 5, I was riding a two-wheeler with another older kid and found myself going straight at this car. The woman slammed on the brakes and stopped, but I kept going (poor reaction time) and went over the handlebars into the grille. As I had to have stitches, this one was looked at--as a laceration, not a concussion. It took me two years before I could ride a two-wheeler again.

At 8, I was playing with some kids swinging on the branches of a pepper tree with some friends. My branch gave way and I went down on the back of my head. I remember being rather amazed at all the colored lights and at the fact that I couldn't move. Eventually I moved.

At 10, I was delivering newspapers on my bike and another cyclist came around the same turn I was in (the turning had a high brick wall) and we collided head on. We both flew over the handlebars and knocked our heads full on. I felt very dizzy and strange for that evening. Not treated.

At 15, I was walking across the street on the way to school in a dangerous intersection. It was early, before the crossing warden was on duty. I was almost hit by a small red sports car but I was hit hard by the large gardeners' truck following him. It caught me at the knee and my right skull was propelled into the front of the truck at which point I lost consciousness. I was bounced off and thrown about 15 feet onto my face wherein I slid for awhile. I awoke fitfully in the street and in the ambulance. I felt and my right forehead was swollen out many inches. I was in hospital for nine days because they found a subdural hematoma and wouldn't let me out of bed. They also did an EEG, which was an interesting experience in 1968. After I was discharged, there was no followup for any concussion related symptoms. I guess they just didn't know in those days.

After being hit by the car, I started to lose my sense of smell, and am now about 90% anosmic. I also started to have very strange sleep apnea incidents: I would wake up aware that I could not breathe and hallucinating wildly. I would try to breathe but I couldn't. Finally, I would see this blue circle getting smaller and smaller, which felt very sinister. Finally, something would kick-start my breathing again.

By my forties, I had severe central sleep apnea, which differs from obstructive apnea in that the brain just "forgets" to tell the body to breathe. It turns out that I was desaturating during these episodes down to about 80%, and my heart rate would go down to about 10. As I was taking care of my late wife as she was fighting terminal cancer, I didn't focus on getting help because I thought this was just the way things were. The apnea did figure in the loss of my job as a psychotherapist. I didn't find out about the severe apnea until 2000. I was put on a BIPAP, and then on a CPAP when they figured this out better.

Meanwhile, I had strings of migraines which I tended to downplay, for family background reasons I won't go through here. Also, deep periods of paralyzing and intractable depression, which had other "explanations" so nobody looked at the concussion history. Also, arthritis, Sjogren's syndrome, and constant fatigue and difficulty "focusing." I've learned over a lifetime to get a lot done in short "bursts" where everything briefly comes together. I finally found a sleep doc who said that daytime sleepiness is common among concussion survivors, and prescribed provigil. My present HMO doesn't have that in their formulary, so I was put on ritalin. Right now, I can't ignite myself to function without ritalin. I'm struggling with insomnia, and was referred recently to an endocrinologist who found evidence of either injury or a tumor in my pituitary gland. I'm making almost twice of something called IGF-1 as the body needs. Also recently converted to diabetes II, and have hypertension.

At any rate, after 2000 I started having trouble finding employment, partly because two professional fields for which I got full training suddenly collapsed (the human services field has been in a Depression for fifteen years) and partly because people were probably picking up on the brain fog. Now, at least when I need to look "dynamic and exciting" I can take ritalin. Ritalin, however, is a bumpy ride. It magnifies the irritability that folks say goes with TBI.

I met another widow in 2004, who had also been married for 25 years. We were married in 2006. But it turns out she has some neuropsychological issues that are not yet diagnosed, but which my years as a clinician make me unable to ignore. She also has physical disabilities, and hasn't worked in ten years. Until a few weeks ago, I was working as a hospice chaplain, but the institution had real problems of some kind and laid a whole bunch of us off, including me.

I guess I'm pouring all this out because TBI, or whatever, causes intense loneliness. I've gone to neurologists and given them the above history, and they shrugged as if it was no big deal. Wrong neurologist, I suppose--but in America, aside from being a culture without bidets, there is the belief that if the doc can't find something "obvious," you are just some kind of malingerer. It's like they expect you to wear a coat with a big LMF on the back. At this point, I'm looking for connection with some kind of support group, someone who can help with what all these symptoms mean, and someone who can suggest ways of staying sane. Also, do multiple concussions cause anosmia?

Thanks for listening

A rather stressed-out gershonb.

Hi,
Welcome to NT and thanks for sharing your story.

The cumulative effect of multiple concussions can be devastating. Hats off to you for coping as well as you have with all the symptoms of a major brain injury.

I’m not sure why you think you need to separate brain symptoms from pituitary. The brain controls everything and it isn’t uncommon for TBI victims to have thyroid and pituitary issues. Many members on NT would urge you to have blood panels to check your hormone levels.

I’m sorry, but not surprised, that you had little luck with your neurologist. Many of us here on NT think “good neurologist” is an oxymoron. Anyway, it appears you need someone else. Brain injuries are difficult and expensive to treat so many doctors will give you an MRI (although they know darn well those things aren’t very good at finding brain injury), declare it clean and send you on your way.

What you need is neuro-psychological testing. The neuro-psych will pinpoint what brain damage you have and how it’s effecting you. If you haven’t had a neuro-psych, demand one.

TBI patients need support to deal with what can be a scary and life-altering condition. If you haven’t already done so, you might want to visit the Brain Injury Association of America webpage at www.biausa.org
o In addition to providing a wealth of information about your injury, the page will also direct you to local services in your area. There are likely support groups meeting right in Georgetown:
o
BIA of Maryland :
o President: Cathryn Winslow
Executive Director: Diane Triplett
2200 Kernan Drive
Baltimore, MD 21207
Phone: 410-448-2924
In State Toll Free: 800-221-6443
Fax: 410-448-3541
E-mail: info@biamd.org
Website: www.biamd.org

Good Luck

gershonb,

Your story sounds a lot like mine, except I was only unconscious once when I was 10. Since then, I can get a concussion from something as simple as shaking my head NO.

Your central apnea a struggle. I have it and my father died from it after 30 years of slow decline. He had to retire at 58 because of the brain fog. He passed at 79 years old.

Avery Medical makes a diaphragm pacemaker that can help with Central Apnea. It is an on/off system as of yet. They are hoping to connect it to blood ox levels and modulate the stimulation so that each breath is not so intense. I am surprised a CPAP works for your Central Apnea.

I would appreciate it if you would post in paragraphs of no more than 4 lines. Many of us have problems finding the beginning of the next line if the paragraphs are too long.

Have you applied for Social Security Disability Insurance? You should. Your history supports your current condition which sounds like it qualifies you for SSDI.

Like Hockey said, you need to have a neuropsych assessment? SSDI will likely do a mini neuropsych when you apply.

I would be very cautious with the Ritalin. There are other safer ways to nourish your brain. There are quite a few books on nutrition for the brain, also much is available online.

Stimulants can have a negative effect on the chemicals of an injured brain. Damaged brain cells are very susceptible to over stimulation. It is called "excitotoxic." The cells can get so stimulated and 'excited' that they die. There are food additives to avoid for this same reason. Mono Sodium Glutamate (MSG) and Aspartame (Equal) are the most common. Caffeine can be a problem.

I am currently waiting for my labs to come back to see where my hormone levels are. The chemical cascade from bad hormone levels can be problematic.

There are plenty of good and knowledgeable people here. Don't hesitate to post your concerns.

Hi Gershonb,

It sounds like you have been through quite a struggle. I'm sorry to hear about your late wife. It's amazing how our will to fight and be strong for others can overwhelm our own issues.

I have to thank you for your story and your information. While I was in the hospital at the end of July, I had a 72 hour period of time where my body was not breathing on its own. No one seemed to understand what was going on, and they were sending in pulmonologists to ck me. I couldn't explain to them that my lungs were fine, it was my brain that wasn't making me breathe automatically.

No one said central apnea, no one seemed to get what was going on. It's enlightening to hear a name for this condition, and I have since been doing research on it. I don't know if it happens while I'm sleeping, but we are going to find out. It stopped on its own while I was in the hospital.

I couldn't get an answer on why this happened or what it meaned. I see my general MD next week, and she wants to discuss it with me.

Where are you at in your doctors visits? Are you only on Ritalin?

I have insomnia if I don't take my Amitriptyline before bed. It helps me stay asleep during the night and through til the morning. I take Nuvigil during the day to help combat my fatigue, but just found out my insurance rejected the pre-auth for it. I'm not sure what will come next. I also take Treximet for migraines.

I'm glad you found this site, and I hope that it can help you.

kate,

Could the amytriptiline be the cause of your day time fatigue? I tried stimulants (caffeine) to overcome the fatigue during the day. When I told my doctor, he read me the riot act.

I have since found that I do better taking a short nap during the day. I have read that some doctors recommend a regimen of short naps through out the day. The theory is that if the brain is fatigued, give it a bit of rest to recover. Keeping it awake does not accommodate the brain's need for rest.

I am struggling to understand the conundrum of insomnia at night but sleepiness during the day. I would think that if I can easily fall asleep in the day, I should also be able to fall asleep at night. If I fall asleep at night, I should feel rested during the day.

It appears that I do best with multiple shorter sleep periods. Too bad our society does not a Siesta time like in Spain and some parts of Mexico.

Dear Hockey

"Good Neurologist" certainly does seem to be an oxymoron, and I have also had trouble finding rheumatologists who aren't jerks. ENT's, of all people, seem to be really curious. I always wondered why these doctors thought that MRI's would tell all where the brain is concerned. It's like trying to understand China from satellite photos.

I think that there is pressure from the insurance industry to declare someone "clear" if nothing appears on an MRI. I know about neuropsych evaluations, because my son had his Asperger's disorder diagnosed through such an exam. Back then, they cost $1500, and today they are anywhere from 5000 to 7500 dollars. So insurance companies insist that you first see a neurologist (and get "cleared" through the MRI) to prevent people from getting the neuropsych evaluation.

Right now, I'm in the middle of trying to get a neuropsych eval for my wife. I'm a clinician myself, and don't like what I'm seeing, and her friends are worried too. After that, I'll pursue my own eval.

I got myself a referral to an endocrinologist when I used Kaiser's neat little test result program to graph where my TSH had been over several tests. It spiked up and down and back, and bore no relation to the free T4 in my system. I take pills because my thyroid was removed in 1980. I also was making almost no testosterone, and was having horrible episodes of sweating. I also have PTSD from multiple truamas unrelated to concussions, and that can overstimulate the adrenal hormones. Tests revealed I was way overboard with Insulin-like growth factor; normal range is 87-225 and I was at 381. They MRI'd my pituitary and I meet with the MD tomorrow to see the results..... This is usually caused by a tumor on the pituitary.

I will visit the brain injury webpage, to see if I can get support locally in Germantown.
Thanks for your concern.

gershonb

Hi Mark in Idaho
I've driven through Idaho quite a few times, in the big lava valley and through Twin Falls down into Nevada. Wow.

I haven't applied for SSDI myself because I have been working up until last month when I was laid off, along with a whole bunch of other people. I did have a lot of struggle before the central apnea was diagnosed. They put me on a BIPAP, but I never could get the damn thing to really work well. After another sleep study, the sleep folks said that they had discovered that Central Apnea can respond to a CPAP. It works better than the BIPAP, though I don't remember what a great night of sleep was like.

I stopped with coffee back in the 1980s, and drink only tea occasionally. I don't do sweeteners. I take ritalin because Kaiser doesn't have provigil in its formulary. I was working in retail sales (jobs in clergy and for counselors had vanished) and zoning out and freezing up. First try with ritalin, and I suddenly got a sense of how "normal" people worked.

If it gets any weirder, and I find I can't find my behind on a sunny day, I'll start thinking about SSDI. Right now we're doing that paperwork for my wife....

thanks

gershonb

Hi Kate

I've been trying Trazodone for sleep, and was on ambien before that. What used to work best for me was L-tryptophan, but they took it off the market many years ago. Now, it's back, combined with Melatonin and a bunch of natural herbal things. Couldn't find it in the stores so I ordered it online.

Some nights the trazodone sort of works, but other nights it's as if I took nothing. Night before last I was up until 6am. Of course part of this is that my wife also has insomnia. Used to think it was Caregiver's Insomnia, from caregiving and standing watch in the middle of the night. Now, I'm really frightened that her night restlessness is part of Something Else, which I'll talk about in the Caregiver's forum.

I remember when I was with my late wife on a cruise, the one we wanted to do for our 25th but which the doctor said we better do a year early (she died the following March). We were at dinner at a table of 8. You sit with the same people every night. Anyway, I was sitting next to a doctor and talking to him. Suddenly, nothing at all happened, but he was looking at me strangely, and said that he was positive that I had just had a petit mal seizure.

Never got a chance to follow that up because my late wife started acting really strangely, starting right at the end of the cruise. Turns out her cancer had gone to her brain, and she got more and more odd and sometimes violent, and we had to have her committed for a month at one point, right after they FINALLY did an MRI and found a tumor the size of a baseball inside her temporal lobe. Got the real Marian back at the end, though, for three weeks.

Where am I in my MD visits? Right now we're chasing down my pituitary malfunction and I find out about the MRI results tomorrow. Believe it or not, it wasn't until I had gone to see an acupuncturist that I experienced someone asking questions about my history in a non-fragmented way. He gave me a blank piece of paper and said: write down everything that happened to you, including illnesses and injuries. He read about the concussions and other traumas I haven't mentioned, and said to go see an endocrinologist immediately.

Contrast that with the "histories" that MDs have you fill out. You check a list of boxes that indicate what they are interested in looking for. They give you a tiny line to list your operations. Most never have a line for injuries or concussions. Most people can fill these out in about three minutes.

I have not had anyone address the multiple concussions directly except for a sleep doctor who prescribed provigil for daytime sleepiness. I had been having over 300 periods of central apnea per night, and was so sleep deprived I would be with people and suddenly be in a dream, talking to dream people. The "real" people were often not amused. You have to be pretty sleep-deprived to have daytime REM episodes.

So I haven't had time, in all this other caregiving and surviving, to really address being bonked on the head so many times.

Nice to meet you, concussionkate

gershonb