Sam
 

Could it be MS?

Sam
 

Could it be MS?

Hmm. Could be. But I can't really find anything that has to do with a dreamy/unreal feeling with MS.

Sam,
 

Anything on the thyroid test yet?

Hope you don't mind; just thought of a few questions. Are you a very thin person or on the heavy side? Do you feel angry and often easily irritated by others or what someone may have done or said?

Is there any bullying from others going on?

Also, when you are in a class; are you mentally there or are your thoughts out the window somewhere??

Sam;
Hang in there; you don't appear to be a quitter.


Gerry

Don't mind the questions at all!

The doctor office in going to for the iodine test has to order the test, and hopefully it will be ready for me to take In a couple days, so have not taken it yet.

I'm a pretty skinny kid, but my weight has not changed drastically since I've started having these symtomps a year ago.

YES. I'm very sensitive. If someone says something to hurt me or my feelings it's very hard to hold in my feelings. I cry often.


No exact bullying, but as I mentioned before at the beginning of this thread I have trouble making and keeping friends. No one really wants to stay friends with me.

I can be mentally there for my first two classes or so, then the dreamy feeling gets worse and it's very hard to focus because of it.

Sam,

Do you know that a feeling of Detachment from Reality is a symptom of Anxiety Disorder?

Dave.

Yes I have. I researched about depersonalization and derealization (both from anxiety or traumatic events) . But I'm not sure if I have that or not. The symptoms described with that ere exactly like mine.




You see, most of my suicidal thoughts come exactly from this TORMENTING feeling of being high all the time. It's because I cannot find an ANSWER for it, And that kills me.


After the special thyroid test, if it comes back fine, I guess all I can resort to is that it's being caused by anxiety. If it's not from anxiety then I'm just going crazy and my life is over. I would probably commit suicide if that happened, knowing that I'm crazy and this is all in my head,



But I pray to God that's not the case. And that it IS my thyroid. Or I find a answer to this.

I hope you get some answers soon.
((((HUGS)))))
bizi

Hang on in there Sam. Fingers crossed for you..

Sam,

Even if, and it is a big IF, it turns out all this is in your head and you are considered "crazy " this will not be the end. It will simply lead to a clear diagnosis which, in turn, will lead to proper treatment and likely stabilization or cure.

In the Grand Scheme we are all a little Nuts at some point in our lives, but I very much doubt that this is the case here.

Dave.

Keep the Faith, Sam
 

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. :confused: 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! :D
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

Hi Sam,
 

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.:hug:
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.

Information on Migraine Variants
 

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! :)

:hug:

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.)

Foods/Drinks and Symptoms - Excitotoxins
 

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.

:hug:

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.

A Neurologist Willing to Listen to YOU
 

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.:hug:

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. ;)

:hug:
DejaVu

Hi Sam,

I am so happy to read such sage advice and support from everyone. Many good points have been raised. Sorry, I am bit behind on posting having had treatments in and out of town this week.

DejaVu raises an interesting question about the weird smells and the question about an EEG is very important. I saw that you went to neurology but if they didn't do an EEG it is certainly worth exploring. They cannot always see what's going on in the brain from their physical exam. Making sure you aren't misfiring somewhere seems like a no brainer, pun intended. hee, sorry, please forgive me. Gotta add some levity sometimes.

Also I noticed that you mentioned making it through your first two classes okay then the feelings starting after that. You also mentioned being dehydrated sometimes and being a skinny kid. Feelings of disassociation, anxiety and low mood are indicators of low blood sugar in some individuals. I myself am one of those people who has to snack pretty much all the time so that I don't become a public threat through aggravated mood or mild confusion. I have no blood sugar disorder of any kind, just wired to burn fuel quickly.

This is so basic but...it might help a little. You are growing, your brain is growing, learning utilizes a huge amount of glucose and then the brain goes into starvation mode and crashes. Do you take a mid-morning snack to school? A handful of almonds or trail mix or even just a protein drink that would address hydration too. I don't mean to reduce your symptoms to low blood sugar, just problem solving here and as a Mom I always feel compelled to make sure young'uns are properly fed and watered.

Keep at it Sam. Clearly we don't all think you're crazy and I refuse to believe that we are under some joint delusion.

sending hugs and prayers, :hug:

Once again thank you everyone for the suggestions and information to try to help me put together this mess.




I think that with all this new information about subtle migraine variants and such I will take action as follows:



1. I'm going to take the thyroid test as soon as it's avaible, and see how that comes back. I believe that I still have hypothyroidism but it just did not show on the "normal" blood test because not all thyroid issues SHOW on the standard blood test. And who knows what my doctor even tested me for.



2.if I don't have hypothyroidism or a thyroid issue than I will show my parents the article DejaVu has provided, and hopefully find a correct neurologist.


3. If I don't have either of the above, I guess more research and figuring out what's wrong with me.


But, once again, I PRAY at this point that I have an issue with my thyroid. They would be able to provide immediate treatment and I could get my life back!





As soon as I take the test, will let you all know the results. Hopefully it's in a couple days. :)

Glucose Tolerance Test
 

Littlepaw makes excellent points. :)
So basic, yet so very important!

Our brains need glucose and are sensitive to an excess and/or a deficit in glucose.

Sam, have you had a Glucose Tolerance Test?
In this test, you fast and have a baseline blood draw. You then drink 8 ounces of a syrup-like drink and have blood drawn at certain intervals thereafter.

http://www.mayoclinic.org/tests-proc...n/prc-20014814

Sound familiar? Most people don't quickly forget having had this lab test.;)

:hug:

DejaVu

Sam, Considering you're not quite 15 years of age, I think it's really important that you talk with your parents about all of this. You already have PCS and/with anxiety, so talking with them about your current symptoms and anything that you may read here is really imperative for your own wellbeing.

As a parent myself, I know that my children didn't always discuss ALL of their concerns with me when they were your age. That's natural but when you're unwell it's very important to tell them everything so that they know what's going on. I think you've said that you do talk to your parents about your concerns but just wanted to make sure.
take care Sam.

DejaVu I have not gotten a gluclose tolerance test.



And Lara, I have been talking to my parents and they are well aware of my dreamy/unreal feeing/state. :)



I've been doing more and more research about thyroid issues and deficiency. There are thousands of people each year who get misdiagnosed with there thyroid and there doctor says there "fine".

Happy I'm going to this other place. It's a doctors office dedicated to diagnose people who have been MISS diagnosed.





I Have faith in this. And in this journey, I don't remember the last time I had this faith.

Faith
 

Sam, Your post about experiencing Faith has evoked a huge smile! :D
My husband is across the room and has inquired as to the reason for such a sudden and such a large smile. I simply said, "Sam" -- and he knew. He asks about you daily. ;)

So many people care about you and want to see you feeling better.
So many more people read this forum and don't sign-in to introduce themselves. We cannot possibly know the number of people offering you positive support with thoughts, prayers and otherwise. ;)

I am very hopeful for you.
I am glad you are also feeling hopeful!

:yahoo::Head-Spin:

How are things going Sam?

Sorry for the late reply! Forgot to check yesterday.


Things are going okay I guess.


Well..


I still haven't taken the thyroid test because I have to wait for some liquid to get delivered. I have to drink this liquid in order for them to proceed with the test. I think the liquid increases my iodine levels? I don't really know.


Anyways, this is taking FOREVER, and its really getting on my nerves. I mean, how long does it take to just take a freaking thyroid test? My mom has been playing phone tag with the doctors office, and shes trying to reach them to make sure that liquid is on its way.



Besides that taking forever, I haven't been feeling that good lately. My symptoms are on and off, but today, I feel horrible. Yesterday I was at a moderate level, today the dreamy feeling is very high. I feel like I'm going to throw up.




So, in summary:


Still waiting on test, and feel like crap still.

Also,



School is getting really stressful for me already. With my constant feeling of unreality its hard to do homework, pay attention, etc. Everything is a constant struggle and challenge when in school.

Sam,

I hope you and your parents have discussed your condition with the relevant teachers and Guidance Counsellor at school. This will explain you have medical reasons for your struggles, ones which are being investigated.

As for homework - your family can really help you break it down into bite-sized, manageable chunks which you can handle. Get into the habit of having no distractions, no tv, phone or music and work for no more than 20 minutes, then take a break. Get up, leave the books/laptop, get a drink, discuss what you have done with family. Then go back for another session. Never overwhelm yourself.

Dave.

Dave,



Unfortunately since no one knows what I'm suffering from yet I don't have a doctors note. So it would be really hard to try to explain to them why I don't feel good without any medical proof, and when I don't even know what it's from yet.


That's why I really want to take this thyroid test and other tests. :/

Sam,

Unbelievable it is taking so long to get the necessary liquid to do the testing. If necessary there may be another Endocrinologist that can do the testing.

I was diagnosed with Hyperthyroid (Grave's Disease) some years ago. After a few years, I eventually became Hypothyroid and take med daily to keep my thyroid level, along with lab test every 4-6 months. I have been under the care of an Endocrinologist for the past 17 years. Although, whether I was Hyperthyroid or Hypothyroid, I did not experience the symptoms you are having.

Sorry you are dealing with so many issues; but so often things can be difficult to diagnose and may take quite some time. Please hang in there.


Gerry

Hi guys,


Just wanted to keep you updated.


Nothing has changed. Feel the same, still have not gotten the test etc.



I'm updating you guys because I'm feeling a bit more anxious and depressed because I cant find out what's wrong with me, because I still have not taken any further thyroid tests.

And that I just want to talk and here from you guys. I need someone to talk to so here's where I come.

Sam
 

Keep the faith Sam. I'm a sucker for happy endings and I feel that there is one out there for you.

Hey Sam,

Isn't it about the end of the first 6 weeks? Doesn't that mean you have survived one third of the first semester/one sixth of the school year? Not too shabby! :)

I am wondering if you can get a doctor's note because of your post-concussive syndrome? That can take a while to resolve so maybe could cover you for a while at school...

Did you ever watch that TEDtalk video I sent you on the game developer Jane Macgonigal aka the creator of SuperBetter? She had mentioned in it that her doctor essentially told her when her post-concussive syndrome kept hanging around that she needed basically zero stimulation so her brain could heal. Are you limiting things with a lot to process visually ie: TV, high graphic video games and such. 8 bit graphics can be so cool...

I hope you have a restful weekend. Find a quiet spot to soak up a little sun and watch tree branches dance. There was something recently on Newsbot about the healing property of "Forest Bathing" which started in Japan where it has an official name in Japanese that I can't remember. :rolleyes: Very Zen, I like it.

Sending hugs and healing love your way, :hug:

Thanks guys for replying!



Yes little paw I did, and I loved the TED talk! Very motivating and something I am able to relate to!



And for school,

Since I've been living with my haunting, miserable symtomps for the past year, I can suffer the day of school. Just when i come home, I immediately rest. The day of school for me is so different than an average kids. Picture being drunk or high, then, try picturing being in highschool. Add the two together, and they don't mix well at all.




Tough to get a new doctors note for PCS or or this. Cause who knows if I still
even have pcs? I don't know what's causing these remaining symtomps



Where I stand now is that, I believe I have either adrenal failure or a thyroid deficiency/disease. Or perhaps, both. Or even better yet, a combination of both of those and still an injured but recovering brain.

Crying today.




Just realizing how long this whole ****ing thing is taking. (Excuse my language and anger) It's been a year and I'm still suffering with the same symptom. And it's so awful because I know my body and I KNOW I have this physical issue but no one can get a proper diagnoses.



It's just wasting time. The more and more I wait the more I get closer to my limit.

Hi Sam,

Every time we take my Grandson to Nursery and see the older kids from the Secondary School I think of you and wonder how you are coping.

I believe you are in a position to get a Doctor's Note for the symptoms of Anxiety and Depression without knowing a root cause. Well, we know why you are Depressed, because of all this. Anxiety is a recognised, debilitating condition in it's own right now, one which should not be left untreated. Do push for this.

As for achievement, I second Littlepaw. You have done remarkably well to cope with school despite all this.

Dave.

Sam,

Our messages crossed, I type slowly.

Use the tools you have been shown to overcome these frustrations. Do not isolate yourself. Distract yourself with company, even family, and something lighthearted.

Just writing quick as I can to send this, worried about you.

Dave.

Hi Sam,

I am glad you enjoyed the video. She just put out a book called SuperBetter, ...of course. I wish I could send it to you!

Listen, Sometimes you just gotta cry. Let that junk outta there, just don't get mired in it. I am not surprised that you are feeling bad this morning. You made it through the week and likely had your game face on most of the time. That takes effort and eventually you need a break from being so strong.

I know how hard it is waiting, waiting, waiting to find out what is wrong. I went through nine months of intense, intractable pain from a nerve injury caused during a minor ortho procedure. There was a lot of crying goin' on during all that. It took what felt like forever to figure out with visits to endless specialists and workup that left most doctors baffled. I didn't give up, even though I had been told there was nothing else to be done. I finally found the right specialty and ended up having a 3.5 hour repair done on my nerve. Then there is the 2 year recovery from that type of procedure. My point is that grit and determination DO pay off. I know it wears you out to keep at this but DO NOT GIVE UP on your body. Take a day at a time or even five minutes at a time if you have to.

Be kind to yourself. Allow yourself to feel emotionally exhausted and to rest. It's okay and expected. Find ways to give yourself some peace and diversion. Dave made some great suggestions as always.

Sending more hugs, :hug: