Hi Sam,

Generations ago, some people had thought some conditions were "all in someone's head," that certain people were simply "crazy."

Research into all kinds of conditions, including mental health conditions, have now proven otherwise. There is science-based evidence for the conditions some people used to think were simply manifestations of "crazy."

Not so long ago, many thought this of serious neurological disorders like M.S. and other conditions. THOSE types of ideas were silly.

Sam, you present as very logical. Your thinking, as you present here, is clear and organized.

I do understand your concerns about what may be causing these experiences you have described. It's "normal" to have concerns about these experiences.

I am glad you are getting your thyroid fully checked out.

Any migraine headaches? Any migraine headache history in your mother's/father's family? Any migraine headaches before or since your concussion?

Any other type of headaches?

Have you had EEG testing, where they place leads on your scalp?
If so, were these tests done with a strobe light as well as without a strobe light?

Any "odd" odors or smells noticed, odors others do not notice -- maybe like smoke or burning rubber, or another you can describe?

Any "odd" changes noted within your field of vision? Any tunnel vision? Any objects changing sizes, becoming larger or smaller as you look at them? Any other visual symptoms? Any flashing lights, any visual auras?

How well do you sleep?

I hope you have a fun weekend!
Anything special planned?

We are all here for you, Sam.
I honestly feel you will find an answer(s) and relief.

Love and Prayers of Support,
DejaVu

One important fact mentioned on the Mayo Clinic site was that often when the affected person learns there is a cause for his/her symptoms (Post-Concussion Syndrome) and that they will improve with time they are likely to feel better about themselves. And again for a better description "not all in your head" or like someone that is not quite right...as you mentioned "crazy". (Many of the symptoms you mention are quite common.)

Again; this is just going to take time. Once you realize this will improve; it will help lessen the anxiety and improve sooner than later. I can understand your frustration; but nothing is so drastic as to feel the need not to go on living.
You have your whole life ahead of you. After this has improved, you will realize life is worth living.

Hang on tightly; you will be okay.


Gerry

Hi DejaVu!

I appreciate your support and I'm just going to jump into your questions.

No headaches really, my mother has had awful migraines all her life, and started when she was around my age. I had a bad headache the first week or two way back in October when I got the concussion.


I have at times smelled odd burning and weird smells, and I would ask my dad, "hey dad do you smell that?" And he would say "No I don't smell anything".



I've always had trouble sleep since I was a little kid. Still do. Normally, I just take a meletonin or two and it Usually gets the job done.


And no visual symptoms. At least that I can think of.



The doctors office for checking out my iodine levels and my thyroid are busy. And they still haven't gotten back to us about scheduling a appointment..



I just want to get better.

I'm going to give a more in depth, detailed, description of my symptom(s).


I NEED to get to the bottom of this. And just maybe, someone can put together the peices.



I'm going to be 15 in October.


It all started when I was around 10 years old. This weird dreamy,unreal, out of body feeling would just CLICK on. Sometimes it would turn on and I would have it for 5-10 minutes... Others it would last hours. But it NEVER got to how bad it is today.


It was not constant either. I would only get once in a while, lets say once every 3 or 4 months. And It was not a worry to me cause it ALWAYS went away.



Then,


October 17th, 2014, I hit my head playing football in my friends yard ( as you all know) when I hit my head it clicked on again. I never thought it was PCS and I just kept playing thinking my dreamy feeling would go away.



Now here I am, almost a year later from that day, and am still in a CONSTANT unreal, dreamy, body is numb, feeling. It is ruining my life.



It gets worse when:

I eat or drink bad foods such as artiffical sweetners/fast food/soda
After showers
Physical activity
Anxiety/stress
Going out to dinner at a restaurant
In school
Stores, malls, etc.




And no matter what I try, it cant get better. It can get WORSE but never better. It always goes back to my Moderate level, which I'm always in.



Now back to when I had it BEFORE my concussion.

I have thought day by day why I had it before, and here is some stuff I put together:

- I realized now that every time It clicked on, I was dehydrated in that day.
- The day of my concussion I had no water and just Energy drinks
- It would click on high stress level days


It's almost like my body cant handle whats going on anymore. It's lacking SOMETHING. And I don't know what. I feel like an empty human being with no life inside me.

I am sorry sam.
You are so young to be dealing with this.
I forget, have you been to a neurologist?
bizi

Yes I have. I've been to 2. Both of them could not find anything and think I'm normal.

Hi Sam!

Thanks so much for sharing more information with us. I also hope we can help you, somehow, even if it's helping you to recall some information and helping you to put the puzzle pieces together in order to present them to your parents and your doctor(s). You strike me as a very insightful young man, with wisdom beyond your chronological age. You are highly motivated to feel better. I honestly believe you have an excellent chance of coming to an understanding of, and also an excellent chance of overcoming, your current challenges.

I understand you have had similar, though less frequent and maybe less intense, episodes prior to the concussion. Concussions have their own ways of expressing our brain's response to the trauma, and they can often further aggravate pre-existing tendencies.

I had asked about family history of migraine and the other questions because I am somewhat familiar with migraines and "migraine variants." I am familiar with these because they run in my family, on both sides, maternal and paternal.

Please note: "Acephalalgic migraines" are migraines without headaches.

What are migraine variants?

"Migraine variant is characterized by paroxysmal episodes of prolonged visual auras; atypical sensory, motor, or visual aura; confusion; dysarthria; focal neurologic deficits; gastrointestinal (GI) manifestations; or other constitutional symptoms, with or without a headache.

A detailed headache history is necessary to establish the diagnosis of migraine variants. As many as 20% of patients with migraine variant may experience prodromal symptoms without subsequent headaches. Such paroxysmal symptoms, with the recurrent attacks of transient neurologic symptoms, with or without headache, with a positive family history of migraine, and with a normal neurologic examination interictally, are confirmatory.

Interictally, the neurologic examination is nonfocal. Ictally, hemiparesis, ophthalmoplegia, or altered consciousness may be observed."

http://emedicine.medscape.com/articl...31-overview#a1

(Migraine Variants Author: Rima M Dafer, MD, MPH, FAHA; Chief Editor: Helmi L Lutsep, MD . June 23, 2015.)

Sam, this article outlines a lot of information about migraine variants. Please note: the link brings you to the full article and also allows you to print the article.

Migraine variants can present in the most confusing ways.
I have both migraine with severe headache and acephalalgic migraine (no headache) with lots of other odd symptoms, which can include periods of "altered consciousness."

I often smell something burning, when nothing is burning. I search high and low for the fire and there is no fire and no visible smoke. People experiencing these migraine variants may smell lots of odors which others do not smell. It doesn't have to be the smell of something burning, per se, however, the burning odor example is a common example.

This article also outlines "differential diagnoses," which are conditions with similar symptoms which might also be considered and ruled-out through testing. I was thinking of some of these "differentials" when asking you questions. (I know of people with migraine variants and people with a subtle form of temporal lobe epilepsy experiencing similar symptoms, for example.)

I don't want to overwhelm you with too much information in one post.

I can tell you, from my own experience and from knowing others dealing with migraine and/or migraine variant (including migraine without headache), the experiences you describe sound familiar. This information I am sharing is not diagnostic.

I am hoping you can use this information to obtain very thorough neurological testing, including EEGs and more, from a highly qualified neurologist.

I can also tell you I have had a concussion, just over 2 years ago now, and many of these migraine/migraine variant symptoms, which had previously quieted down for a few years, were back, were severe, and were and making daily life very challenging. I am continuing to recover/improve, as I write this to you today.

I agree with our friend "bizi," in wondering if you have seen a neurologist and if you have had extensive testing beyond an evaluation for concussion. You have mentioned you had these episodes prior to concussion. I had wondered about this and am glad you have shared more about the timeline of symptoms.

I suspect the concussion has possibly aggravated a condition/predisposition you may have had prior to the concussion.

I hope this information, the Medscape article and my sharing from my own experience, may prove helpful to you, soon. Migraine and various forms of the more subtle types of epilepsies can be complicated and can be very tricky to accurately test/diagnose.

I am sure other friends here will come along with additional information and potential insights. We are committed to supporting you as best we can. I truly appreciate your patience and your honesty as you share. It's easy to support you, as you are highly motivated to feel better.

I hope you are enjoying your weekend, Sam!



With Love and Supportive Prayer,
DejaVu


P.S. Oliver Sacks has written an excellent book on migraine, entitled Migraine. He did an amazing job of writing about migraine variants in his book. This is an older book now; however, it has helped me and has helped many of my physicians to better understand "migraine variants" when there was less published in medical journals on this topic. (His book was initially published in 1970, revised in 1992.)

Hi Sam,

You have also mentioned noting some foods and/or drinks have exacerbated your symptoms.

With concussion, with migraine and/or other conditions, these conditions often tend to "sensitize" the brain and/or cause the brain to (hyper-) respond to various CNS stimulants or "toxins." Much is now known about the role of substances in foods/drinks referred to as "excitotoxins."

Please see the "Dietary Considerations" section of the Medscape article listed above. http://emedicine.medscape.com/articl...erview#showall

Our own mrsD had posted a link on "excitotoxins", where neurosurgeon Russell Blaylock, M.D., is interviewed about excitotoxins. Please see mrsD's post which links to this interesting video: http://neurotalk.psychcentral.com/sh...t=excitotoxins

I hope this information helps.



DejaVu

Thank you so much for the information.



Extremely appreciated!



So how exactly is migraine variants and these conditions diagnosed? Through EEG's?


Like you said a lot of information haha. I'm going to try to read more into it.

Hi Sam,

I was thrilled to see the article can be printed out, which makes it easier to take it to your doctors, to show it to your parents, etc.

I apologize for all of the terminology, etc. It's an article from a credible source and covers enough to catch the interest of your doctors, I hope.

I like to take articles like that one, print it out, write notes on it, etc. It helps me to keep my focus and to later return to the article without feeling totally lost all over again. Lol!

As for securing an accurate diagnosis, you will need a neurologist willing to listen to you about your experiences.

As you have mentioned, you have seen 2 neurologists and they "think you are normal." That's good news, by the way, albeit frustrating for you.

I think they mean they don't see anything overtly or obviously disconcerting to them. ( They see no signs of a major tumors, no signs of advanced serious neurological disease, etc.)

Neurologists often see overtly serious and/or degenerative conditions. Most neurologists perceive conditions like migraine, the more subtle epilepsies, concussions/PCS, etc, as "unfortunate," "possibly painful," and "inconvenient" for the patient. They often do not see these conditions as "serious" in comparison to many conditions they often see and/or treat.

Ideally, it may be very helpful for you to see a neurologist specializing in headache/migraine.

First of all, a neurologist must be willing to listen carefully to you about your experiences and your concerns. S/he must understand how serious this has been for you, how this affects your life and your sense of self, your sense of hope about your future.

Secondly, it would be very helpful if the neurologist is highly specialized in understanding the nature of migraine/migraine variants/migralepsy/epilepsies.

Such a neurologist will know/understand all of the information you share about your experiences, will know which tests to perform and will know how to put all of the information together to come to the most accurate diagnosis.

I had wanted to share the Medscape article with you for a few reasons:

I want you to see there are conditions which can cause a sense of change(s) in consciousness, conditions which do not deem anyone as "crazy."

I was wondering if some of the information in the article might help you to recall more information about your own experiences. Sometimes we need "cues" to help us to recall, especially if certain experiences have become our "norm." We rarely report our "norm," even though it may be helpful information to a clinician trying to assist us.

I had wanted to find/share a credible medical article with you, with your parents (should you decide to share it with them) and a credible article for you to print and share with your doctor(s) -- only IF YOU feel this may be helpful information.


DejaVu