I'm sorry to vent on here but I am feeling helpless and hopeless. Here's my background, 10 years ago I was hit in the head with a basketball while teaching. I suffered pcs without knowing that it was actually pcs (never diagnosed).

A NUCCA chiropractor helped me relieve my symptoms and the only lingering symptom I had was anxiety. For almost 9 years I lived happily. Had 3 children. Then after my last child just in April I lost my alignment (I have lost it previously but can hold my alignment for 2-4 years at a time).

So I was out of alignment in a "new" pattern which required me to be adjusted on the side of my injury. I didn't feel right after and thought I just didn't "hold" and had to be readjusted. So I got adjusted again a week later and this time my old injury flared up and I felt concussed. Then I got re xrayed and I was out of alignment all the way on the other side! So what started out at 17 degrees out to the left ended up being 20 degrees out to the right. My neck spontaneously flip flopped. During my healing years prior it did this too, adjusted on the injured side only to have all my old symptoms flare up again. It took me 6 months to recover last time (in 2006) and then I held my alignment for 4 years (and even had a baby and continued to hold).

Neuro this time diagnosed me with pcs and migranous symptoms.

So here I am again and my symptoms seem to change daily. I never know what to expect. I get stroke like symptoms at times, other times I feel like passing out or that death is at my door. The entire body aches I get are outrageous. Just in the last 3 days I seem to be getting sensory overload. I'll be active in the morning (just by getting up, getting kids dressed and fed) and then laundry and by noon I'll get a headache and can't think - even my thoughts are jumbled. Its like my brain is shutting down.

I am staying at my moms to try and rest because my kids are so stimulating. I'm not driving or working and too sick to even go into a store.

I'm feeling scared that this will never end (I'm in alignment and still symptomatic). I feel sad for my kids and I miss them terribly. I feel like a burden to my husband as he has had to take time off work.

I'm scared that this came back after being adjusted and scared this will lurk around the corner for the rest of my life. I'm also scared of dementia.

I just tried amitriptyline with bad side effects but was at my sickest yesterday so am going to try 2.5mg. I am so sensitive to everything especially mediscared.

Feeling scared. Cried all day.

I don't think your symptoms are just due to your upper neck. You need to keep looking. Have you been through a hormone workup like recommended by EsthersDoll ?

I'm not sure where estherdoll hormone workup is but I just got blood tests ordered by an endocrinologist. It showed high cortisol and low vitamin d. She tested thyroid and acth, HGH, dhea and more. Everything was normal.

Also I tried to talk to the neuro about what is going on. He did not think I needed another MRI and dismissed chiropractic as nothing more than a placebo.

I agree that there is no indication of a need for an MRI. The chiro comment is to be expected. That neuro is actually in violation of a court order achieved against the AMA and its members 2 decades ago.

I do think your NUCCA chiro may be over stating your condition but I am not saying he has not helped you.

EsthersDoll has posted her story many times. Look at the thread about 6 or 7 items down on the index called NeuroEndocrine Dysfunction.

My MVA left me with a neck injury that is too dangerous to stabilize surgically, so I'm in a battle with a bevy of neuro symptoms. When I'm really struggling, my PT tells me to wear my cervical collar to keep my neck still.

You could give that a try and see if it didn't give you come relief from the headaches, etc... Never wear a collar for too long though, otherwise your muscles could atrophy and exasperate your symptoms.

Are you seeing anyone about your depression and anxiety? I don't mean just swallowing pills. A good psychologist could help you learn coping techniques. I suspect if you could improve your emotional wellbeing, you might feel a tad better physically, too. You should also consider contacting your local chapter of the Brain Injury Association. They can be a great source for information and support groups.

Quite a number of us are TBI moms, so we know it can be tough to get proper rest and downtime.

Thanks for the reply. I started to see a counsellor last week and see him again this Wednesday. I am hoping that will help too. Being a mom with this is so hard. My kids are ages 5,3 and 6 months; all boys and my husband works up north a week on/week out. He is going back to work on Thursday. I'm terrified. My mom will be looking after the kids since I can't seem to do anything. I am just so upset over all of this and feeling rotten is no good either

A generic endocrinologist may not be as well informed as you need regarding TBI issues. The neuroendocrine dysfunction thread is at the top. Check it out. Many doctors use a wide range of 'normal' when you may need a more specific assessment.

It is easy to get your D3 up. It takes a while to get D3 levels up once you start with D3 supplements. Your body is also struggling to get back to normal since you had your youngest just 6 months ago.

I just wanted to update this post, if nothing else but to help someone else out there who may be going through something similar.
After I had written this I consulted with a Neuropsychologist named Dr. Diane Roberts Stoler who wrote a book on concussion and mtbi. She put me on a strict diet for 2 weeks to try and rule out any foods that may be causing me symptoms as well as give my brain a break from trying to deal with processed foods, etc. The only thing I noticed was that vinegar gave me a headache and bread made me tired.

My neurologist had diagnosed me with atypical migrainous symptoms.
I tried Amitryptiline and it was horrible, It felt like when I woke up my mind was awake but my body was still sleeping - it was terrifying. And by day 2 I was so depressed I wanted to kill myself. So I went off it.

I tried Atenolol but it also made me so sick. I was taking a ton of Advil for way too long and so I decided that since I was on an anti inflammatory diet I would wean myself off the advil. The more I weaned off the advil the better things improved. I eventually got off everything and continued to take Vitamin C, D, multi vitamin and Tylenol seemed to help.

I was getting painful pins and needle feelings all over my body, a pain in my abdomen just below my sternum on the left side, almost like a muscle was spasming and I was weak everywhere. Each day I did some more and it was as though I had to build up new muscle as well as new neural connections. Each time I experienced something (like trying to feed my baby) it got easier the next time.

We had to hire a nanny as my children were just 5, 3 and an infant. Eventually I was able to be well enough for the nanny to leave and my husband was able to go back to work up north and I could resume my life looking after my children on my own.

I struggle with a daily headache. I get painful pins and needles and upset stomach and it seems as though if I do any type of exercise (like walking my kids to school) I will pay for it for a few days. I also always have this feeling that I've drank a pot of coffee (even though I haven't drank caffeine in over a decade) and my anxiety is very high,which I believe is a symptom of my condition as well as my own fear of everything that is going on.

I was FINALLY able to see an endocrinologist. 2 actually. The first one did a Glucagon stimulation test to check for hypopituitary and human growth hormone deficiency. It came back normal so we could rule that out.

The other endocrinologist is testing me for a whole host of things. She is testing for Pheochromocytoma, histamine, gut peptides, metanephrines, and more.

Years ago when this first started I was diagnosed with Neurocardiogenic Syncope, which I have learned is a form of Dysautonomia. I am really wondering if I don't actually have POTS and not NCS. I am also curious if I have Mast Cell Activation Syndrome. These are things that I am going to be pushing for. The histamine blood test is a great starter.

I have also been in contact with an Atlas Orthogonal Chiropractor named Dr. Scott Rosa from NY. He went over my MRI and NUCCA xrays to try and help me figure out what is wrong. He does upright MRI tests to determine if the cerebellar tonsils of the brain are herniating through the foramen magnum. This would be similar to Chiari Malformation but on a regular MRI would not show up or be measured as a chiari. This doctor hypothesizes that the herniation, no matter how small, equals big symptoms. He said I definitely have Cranio Cervical Syndrome.

Since I have stabilized from how sick I was he advised against doing anything that would disrupt this.

Every day is a struggle. I vibrate with anxiety, deal with pain in different places all over, get red hot cheeks or ear at times, painful eruptions of pins and needles - it's like I'm on the verge of the motherload of migraines and am fighting it off every day. I am careful not to over do it, I need to sleep well, eat on time, avoid stress, you name it.

I currently have a sinus infection and am having a hard time being strong enough to get through it. I am afraid I may have lost my alignment (have been holding for 8 months). I have no idea what will happen at the next adjustment and I am terrified. Why not just avoid it? Because the symptoms get worse and worse and worse until I'm bed bound.

I will update this thread again once I get some blood test results back from the endocrinologist.

Hcarmen,

Good to hear how you are doing.

What are you doing to help try to maintain good alignment ?

For me, I suffered what could be compared to disautonomia if I let my neck got out of sorts by sleeping or resting in poor posture. It took a year or longer of disciplined sleep and rest posture to see even a beginning of stabilization in my neck. My symptoms when bad would be low pulse and blood pressure, poor breathing to the point of Central Sleep Apnea, strange body jerks and tingling, lousy proprioception (awareness of body and muscle position).

I believe my problem is in the cranium to C-1 joint. It would get out of position and causes brain stem inflammation.

So, I think the NY Atlas Orthagonal chiro may be onto something but the important part is what to do. If could just be inflammation rather than herniation. Both could have similar symptoms. It would be worth considering.

One of the things I did and still do is rest in a recliner and not go to bed until I am ready to immediately fall asleep. This way, I sleep in straight neck posture and wake up that way. It has changed my life. And adjustable bed could provide similar benefits.

Just my ideas of what helped me.

I hope you can find something to work for you.