Question: Hi, I have been having some strange health problems since 2003 (I was 23 years old then, I am now 35). I got hit in the head with a frozen basketball and a cascade of strange symptoms occurred shortly after. Besides the dizziness and feelings of passing out, I vomited and had severe diarrhea a few days after the ball hit me. I thought I had the flu. For 10 days I rested at home (because it was Christmas break from school) and when I went to go back I felt this strange nervousness (like drinking WAY too much coffee) - like my body was nervous but my mind wasn't. I then had this strange feeling that something bad was about to happen - even though nothing bad was happening. My heart rate then began to beat really fast, my resting heart rate was 125bpm upon waking in the morning. When I stood up it jumped to 160bpm and my blood pressure dropped. My blood pressure was low and I felt like passing out all the time. I had these adrenaline/panic rushes that flushed over me in waves. It felt like my blood pressure would drop over and over like falling in an elevator. I became so tired and so weak and had these episodes that felt like I was going into shock (would turn cold and white like I wasn't getting enough blood to every part of my body). It felt like my body was stuck in flight or fight plus making me incredibly weak and tired (I was a 23 year old teacher). I could no longer work and could barely take care of myself. Having a shower would exhaust me for the day. I could not tolerate stress at all. Even laughing, or that small excitement when the phone rang was too much to handle. I would get these chest pains while trying to deal with the stress. The pains were almost like a muscle was spasming just under my rib cage just below the sternum. My short term memory also was suffering. I had fasiculations running down my body (mostly on my left side as this was the injured side) and could feel them in my tongue at times and even in my genitals at times as well. I felt spacey and dizzy almost all the time. I had an upset stomach and a lot of diarrhea. My ears were ringing. It was like all my muscles were breaking down. I even had an episode where the left side of my body went weak and even the left side of my face sort of drooped. I felt hungry for air at times. All neurological tests came back normal and they concluded I wasn't having a stroke. I had pain at the site of the injury as well as at the back of my neck where the skull meets the neck. I also had a lot of pain in my left shoulder where the neck meets the shoulder. My jaw also began to crack all the time. I became extremely sensitive to medications to the point where I can barely tolerate anything stronger than Tylenol. Medications made things so much worse. It was like I was a baby on adult doses. At one point I was given IV fluids and it made me feel almost normal.



I also experienced episodes when I was falling asleep where my body would forget to breathe. I would wake up feeling like I was drowning, gasping for air. This wasn't like the typical obstructive sleep apnea, it was like my body would just stop breathing. I would also get weird sensations as I was drifting off to sleep - forgive my description but you know when you lay down and sink down into your bed and feel gravity pull all your tired muscles down...I couldn't feel that in my body and had to move my arms and legs to make sure I could still feel them (I could).



I was diagnosed with neurocardiogenic syncope after a tilt table test and several ECG's and an ultrasound and 24 hour holter monitor of my heart. I was given (over the course of the illness) propranolol, metoprolol, Effexor, Paxil, Nexium, Tegretol, Naproxen, Flexeril and many more, none of which had any effect on what was happening to me. I had 2 MRI's (one with DTI and SWI) and a CT scan of my head and neck which showed nothing except for an incidental finding of a disc buldge at c5/c6 and moderate-severe spinal stenosis as well as kyphosis of the neck (military neck).



I eventually saw a chiropractor and was relieved of some of my symptoms allowing me to function better throughout the day (but still very sick). it seemed as though my 1996 whiplash from a car accident (was stopped and was hit by a driver going 70km/hr) was playing a role in my problems. After 6 months of treatment nothing was changing so I learned about NUCCA chiropractic (which is a chiro specialty dealing with the atlas/c1 only). I continued treatment for 2 years noticing things were improving. The longer I held my alignment the more things would improve. I was only holding adjustments for a month at a time when I had to get adjusted on my previously injured (left side) and all my symptoms came flooding back and I was as sick as I was in the beginning - feeling of something bad happening, terrible nervousness, panic rushes over and over, fasiculations, etc. When x-rayed it was noted that my neck that previously measured 17 degrees to the left was now 19 degrees to the right (optimal is zero, but it is very strange to have the neck 'flip flop' like this). Holding my alignment didn't help get rid of my symptoms immediately and it seemed as though the cascade of muscle breakdown, anxiety, intolerance to stress etc (just like in the beginning) was happening again. This time as my health declined I went off all medications and ramped up my vitamin c which seemed to help. Things started to improve and I began to go uphill with my health. It took almost a year after that episode but I ended up getting well enough to work.



I held my alignment for 4 years (something that most people can't do) and was able to go back to work and resume my life as normal. The only thing I dealt with was feelings of lightheadedness (especially at noon hour time) and this anxiety. I was never the same again, always having this underlying nervous feeling which is frustrating because I was a very confident person. I even had a baby via c section in 2008 and still held my alignment. Between 2006-2014 I lost my alignment 5 times - and each time I lost my alignment I would get this nervousness in my body (but not anxious in my mind) and was adjusted, on the right side (non injured side). I had 2 more children via c section in 2011 and in 2014. In September 2014 I required an adjustment again but this time on my left (previously injured) side and the cascade of symptoms started again. X rays showed a neck "flip flop" again from 17 degrees out of line to the left to 20 degress out of line to the right. The inflammation that I had in my head behind my eyes, at the base of my skull was so intense that at times it felt like I was seizing up both in body and mind.



Over the course of weeks the feeling of impending doom, terrible nervousness, adrenaline rushes, fasiculations, weakness, intolerance to stress. This time my blood pressure wasn't low. In fact I was seeing numbers like 135/96 which is high for me. This time I was also having a headache between my eyes that intensified as all the other symptoms intensified. I was sweating so much in the night I'd wake up with wet clothes. I could hardly sleep, suffered from insomnia (because I couldn't calm myself down from this nervousness for no reason) and if I did fall asleep I was consistently up at 4am. I would also have to eat in the middle of the night or else I felt like passing out. I was having episodes again of feeling like I was going into shock and going to die. I also was losing weight (about 5-10 pounds) and had not changed my eating and my activity level in fact got lower. I acquired a new symptom that was very scary. If I would do some cognitive work (like reading on my phone, or addressing envelopes for Christmas cards) it was like my brain was over worked and would shut down, even the thoughts in my head were jumbled and I probably wouldn't have been able to tell you my name. I would have to go and lie down in a dark room and wait for the feelings to pass. It would take hours. My ability to handle stress became so non-existent that I had to leave my house and my children because they were too stimulating. I could not miss a meal ever or even be late for a meal or a snack or else my symptoms would intensify. Hearing my baby cry or my children speak was too much for my nerves/body to tolerate. I was taking 400g of Advil every 4 hours and ended up doing so for about 2 months.



I also experienced a lot of pain in my body, mostly on my left side. My muscles were so sore, sometimes it felt like I had a deep ache to the bone. The muscle behind my left ear felt like it was ripping away from the bone. I would feel sensations (as the fasiculations worked their way down my body) of muscles weakening and then releasing. It would feel like my esophagus was S-shaped or like I had whiplash in the front of my neck muscles. Even one time it felt like my tongue was shifting at the back of my throat. Even stranger was that night I didn't snore for the first time (I have also been diagnosed with sleep apnea and Oral allergy Syndrome but I can't use my cpap machine because I was prescribed the machine right after I gave birth to my 3rd son and I have lost 65 pounds since then and am on a wait list to see a respirologist to get my air pressure prescription changed since it fills me up with too much air now). I would also get pain over my body that felt like pins and needles. My skin behind my eyes and nose felt sunburned and I got little white bumps (milia) on my eyelids. My butt muscles also felt sunburnt.



I consulted with another physiatrist and neurologist who diagnosed me with post concussion syndrome with atypical migrainous symptoms. They gave me amitriptyline. I tried it, and it helped with my symptoms on the first day but because I am so sensitive to everything I felt suicidal by day 2. So I tried Atenolol, also the side effects were too strong. So I went off everything and seemed to turn a corner in December and my health is going up hill again.

At this point I am about 80% back to normal except I still have so much of this nervousness/anxiety (although not as severe as when the episodes first begin), headaches (although I am getting breaks from them now, they are not continuous) and my period is super heavy for 5 straight days and then I bleed lightly for the next 2 weeks or more. This is a new symptom for me also but is distressing as my PMS seems to be hard to handle and interferes with the functioning of my life. The anxiety and headache increase exponentially during PMS and the first few days of menstruation. I have had a pelvic ultrasound that showed little fibres on my ovaries but they were very small. Interesting to note; in 2013 I was put on the birth control pill, Marvelon, and my body experienced severe anxiety with chest pains - similar to the nervousness I feel during my "episodes". I only took the pill for a week but the anxiety was so terrible I had to stop and then it took almost a month before I felt back to normal.



I consulted with a neuropsychologist who thinks the brain injury I have is in the brain stem because I was hit in the head on the left side and when you're injured on the left side of your brain your symptoms should be on your right side of your body. She also put me on a diet that eliminated all dairy, gluten, foods that make alcohol (corn, potatoes, vinegar, grapes, plums, pears, peaches, etc). I eliminated the foods for 2 weeks and then reintroduced them slowly to see if I had a reaction. Vinegar gave me a headache and that was all. I easily lost another 10 pounds and even with adding more breads and some sugars back into my diet my weight continues to slowly decline which is a major change from what I'm used to - having my weight never budge even with big efforts! I have not had caffeine since 2003 and have about 3 alcoholic beverages each year as well. My body cannot tolerate caffeine.



Since my case is considered "non urgent" and we have only 1 endocrinologist in my city it could be 2 years before I see her. She ordered blood work and now I wait to see her. The blood work results are as follows:

TSH - 1.38 mIU/L (ref range0.27-4.20)

Free T3 4.34 pmol/L (ref range 3.90-6.70)

Free T4 17.1 pmol/L (ref range 12.0-22.0)

Vitamin D 48.23 nmol/L (ref range 70-250)

FSH 4.9 IU/L (ref range: Follicular Phase 2.5-10.2; Midcycle Peak 3.4-33.4; Luteal 1.5-9.1......Period was Oct 15-23 and test was taken Oct 24)

LH 3.7 IU/L (ref range: Follicular Phase 1.9-12.5; Midcycle Peak 8.7-76.3.4; Luteal 0.5-16.9......Period was Oct 15-23 and test was taken Oct 24)

Estradiol 219 pmol/L (ref range: Follicular Phase 46-607; Ovulation phase 315-1828; Luteal 161-774......Period was Oct 15-23 and test was taken Oct 24)

Prolactin 8.1 ug/L (ref range 3.0-20.0)

DHEA-S 5.06 umol/L (ref range 1.65-9.23)

Cortisol 752.1 nmol/L (ref range 138-635)

Anti Thyroid Peroxidase 16 IU/ml (ref range 0-34)

Anti Thyroglobulin 20 IU/ml (ref range 0-115)

ACTH 7.90 pmol/L (ref range 0.00-11.00)

Human Growth Hormone <0.05ug/L (ref range 0.00-8.00)

Cortisol Free 24 hour Urine 134 nmol/d (ref range 25-146)



The patterns I notice with this illness are:

Daily - if I wake in the night it's at 4am consistently. Symptoms are always bad in the morning, get a little better and then between 11am-1pm they are worse again (that new symptoms of my brain shutting down and having to lay down in a dark room consistently happened during this time frame and no other time) after this they get better and in the evening I feel my best, sometimes even feeling completely normal.



Monthly - Symptoms always worse during PMS and the first few days of my period.



Episodically - feels like the illness follows a bell curve. Symptoms go downhill (get worse and worse) and eventually turn around and go up hill.



I seem to be hypersensitive to everything happening in my body, and to medications.



I consistently have this pain in my upper abdomen/lower chest on my left side just below the rib cage that appears when I am symptomatic with headache and nervousness. Feels like heart strain or a muscle pulling or spasming or something. Sometimes the feeling is in back straight back from the pain at the front (at the same height).



Things that have helped : Loads of Vitamin C, walking lightly (I am very slow to recover from exercise), NUCCA and being in alignment, sometimes IV fluids, advil but not long term.



Things that make it worse: Losing my alignment or being adjusted on the left side, massage, medications (both natural and pharmaceutical), acupuncture, stress, lack of sleep, hunger, exercise causes symptoms as well as takes a long time to recover.



I have been seeing a psychologist. She wants to know what my adrenals are doing.



I realize this was a very long story. Thank you for reading it and I appreciate any insight you might have. It has been such a long journey and in the place I live (Saskatchewan Canada) there are not many specialists and if we get referred it takes years to see them making this process hard to endure. Any ideas of what could be happening? I feel the diagnosis of atypical migrainous symptoms doesn't fit what is happening to me.

What a small world for you to have family in Saskatchewan! Thanks for your response, I am happy to answer your questions:

1) Was there any issues before the ball hit you?
Before the ball hit me I had been rear-ended in 1996 and got whiplash. I don't remember much about that situation, I went for physical theraphy and my neck always hurt and shoulder always burned but I thought that was what I was going to have to live with because of the whiplash and didn't investigate further. I passed out at work one day (after the whiplash.....could have been several months later....not sure if it was related). After that incidence I noticed that I had to eat and snack on time all the time otherwise I'd get lightheaded and feel like passing out. I also had this strange episode every year from 1998-2003 where I would vomit and diarrhea at the same with terrible abdominal pain. It only happened once per year and I was starting to find it strange that nobody else around me seemed to get this "flu" that I thought I was having. I never had it investigated and am only mentioning it now because I did find it odd.

Prior to that I had surgery on my bladder because I was getting bladder infections all the time (I believe it was called bladder ablation, where they scrape the bladder walls to get rid of bacteria.) I have only had 1 bladder infection since.

I had my tonsils and adenoids removed when I was 5 years old (1985).

Other than that I really have no other health history other than being diagnosed with borderline asthma when I was 10 years old and that has seemed to resolve.

2) Have you ever been treated with steroids in past?
Not to my knowledge. I had some nasal spray once (florinaze) for a little while years and years ago. This summer I was diagnosed with Oral Allergy Syndrome and was given some spray to start taking in April (but I have not taken any yet).

3) Was there any ultrasound abdomen done ?
No there was not. I had ultrasounds during my 3 pregnancies...would that count? I had a pelvic ultrasound done as well with no findings other than some small fibers on the ovaries that didn't point to anything.

4) Do you feel your body is losing mass (im more concerned about muscle mass)
This is a hard question to answer. I am definitely not as strong as I was and since being sick again with this latest episode I have had to build up strength every day and even experience a ton of DOMS (delayed onset muscle soreness). At first it was during little activities like just moving around the house. Once I got stronger I could do more (lift the baby more, grocery shop, etc) but I still don't feel as strong as I once was. I have always been on the heavier side (but not obese) so it's hard to tell. It may be worth noting but after my first pregnancy I noticed an indent in the top of my thigh which I thought was really strange. I asked my doctor about it and she wasn't concerned, I just associated it with my changing body after pregnancy.

5) Any diet changes you have made?
I consulted with a neuropsychologist who put me on a strict diet (which I followed strictly) for 2 weeks that cut out dairy, gluten (wheat, oats, barley, rye, bulger, etc), sugar, sugar substitutes, honey, syrup, and any foods that can make alcohol including vinegar. I did this for 2 weeks before slowly re-introducing foods to see if I noticed any changes (I noticed vinegar gave me a headache and bread made me slightly tired and sugar made me slightly anxious). I permanently do not drink caffeine, alcohol, or eat sugar substitutes. Since then I have changed all "wheat" products to whole wheat (pasta and bread) and we are getting bread from the bakery with no preservatives. I eat butter from grass fed cows (and have cut out becel margarine). I still eat some sugars and I eat dark chocolate as opposed to regular.

6) Any steroid or antiallergy meds you are taking?
Not at this time. I took a couple of Claritin pills in the summer (August) and that was it.

7) Do you get visiual problems?
I have some floaters in my vision, and there was a time where when I looked down at my phone it looked like I was looking through tears and then that episode where it felt like my mind was shutting down (couldn't think, had to go lay down in a dark room.....flooding or too much stimulation for my brain?)

8) is there any collection of fat or swelling any where in body ? like face upper back legs?
I wake up a lot with a swollen face and particularly swollen eyelids. My husband could tell how I was feeling many days by looking at my face and the swelling in my eyes.
My husband has always teased me about a hump on my back where the neck meets the shoulders which we thought was from my disc bulge. If ever I wear a shirt or tank top (or even my wedding dress) that shows the back of my neck I have always kept my hair down to cover that hump. I even refuse to get my hair cut shorter than that hump. It seems to have gone down over the years and now it doesn't seem as big for some reason. I think it has to do with the NUCCA chiropractic treatment as now I can see my collarbones too.
Like I said in an earlier answer, on my leg in the upper thigh I have this strange indent in the fat/muscle. Like if you were to push a table with your thigh and the indent just stayed.

9) hoe does your BP stay these days?
My blood pressure now is good. It is anywhere from 110/70 - 120/80. I have not seen numbers in the 130's/90's since it was happening earlier. I remain in alignment and the type of chiropractic that I use (NUCCA) has a study published in a medical journal about NUCCA working to reduce blood pressure.

I hope I was able to answer the questions, if I wasn't clear on anything please let me know. It might be important to note some family history as well:
- My mother and maternal grandparents (and almost all aunts and uncles) have Diabetes.
- My paternal Grandfather had polycystic kidney disease.
- My son was born without his right kidney (has the artery, just no kidney)

I look forward to your response and really truly thank you for taking the time to read my long story.
Sincerely, XXXX

I hope that answers your questions.

Thank you so much for your detailed answer and your care and concern in my long and difficult case.
I've read some on Cushing Syndrome and do admit to see similarities in myself. Hopefully I'll be able to see an Endocrinologist. I will have to get referred out of my province but we are willing to travel.