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Old 10-04-2012, 11:03 AM #1
Mark in Idaho Mark in Idaho is offline
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MMystery,

Darlene makes a good point about the B-12. In fact, you should probably take 1000 mcgs and a B-50 complex and magnesium and calcium supplements, too.

You did not answer luduplo's question about any kind of brain or head trauma. Do you or did you play any sports? Have you been involved in a vehicle collision? Have you suffered a high fever?

Before a sleep study, an EEG with sleep session would be a better study. You stay up all night before the EEG so you can easily fall asleep during the EEG. Much less expensive that a full sleep study.

Are you taking any medications? Please disregard your pupil reactivity observation. It is very unreliable for a person to check their own pupils for reactivity.

You sound like you have had brain trauma, likely a long term series of very mild but repeated brain trauma. Your cognitive and memory functions are very common to Post Concussion Syndrome and/or Sub-Concussive Impact Syndrome.

I usually post in the Traumatic Brain Injury and Post Concussion Syndrome forum. I have lots of knowledge and experience in that area. I have suffered a few different seizure symptoms.

My best to you.
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Old 10-04-2012, 11:24 AM #2
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Quote:
Originally Posted by Mark in Idaho View Post
MMystery,

Darlene makes a good point about the B-12. In fact, you should probably take 1000 mcgs and a B-50 complex and magnesium and calcium supplements, too.

You did not answer luduplo's question about any kind of brain or head trauma. Do you or did you play any sports? Have you been involved in a vehicle collision? Have you suffered a high fever?

Before a sleep study, an EEG with sleep session would be a better study. You stay up all night before the EEG so you can easily fall asleep during the EEG. Much less expensive that a full sleep study.

Are you taking any medications? Please disregard your pupil reactivity observation. It is very unreliable for a person to check their own pupils for reactivity.

You sound like you have had brain trauma, likely a long term series of very mild but repeated brain trauma. Your cognitive and memory functions are very common to Post Concussion Syndrome and/or Sub-Concussive Impact Syndrome.

I usually post in the Traumatic Brain Injury and Post Concussion Syndrome forum. I have lots of knowledge and experience in that area. I have suffered a few different seizure symptoms.

My best to you.
*edit* luduplo*edit* focused on his/her assessment that my issue is an anxiety disorder *edit* it's something that I strongly do not believe to be my main issue, and I feel very dismissed when I try to seek help and people tell me it's all in my head.

Anyway, my B12 levels actually were low when my neurologist ran blood work. He suspected that I had pernicious anemia, but after taking supplements for a month, my level was normal. I have been taking a B-complex supplement for several months now, and I have not noticed any improvements in my symptomatology.

Regarding brain trauma, I did hit my head really hard on a lamp table about 4 years ago, so it is possible that that incident contributed to my issues. However, I began experiencing symptoms several years before hitting my head. I did not partake in sports while I was in school, but I was involved with color guard with my school's marching band for two years. I was never hit in the head with a flagpole or anything like that during this time, however.

Up until a few days ago, I was not taking any medications. I have been taking a Chinese herbal formula that my acupuncturist gave me for the past about two months. A few days ago, I began taking Prilosec because my cardiologist wants me to try it and see if it clears up the nagging chest pain that I have. As I said, though, I've literally been on the Prilosec for a few days, not even a full week.

Last edited by Chemar; 10-04-2012 at 11:34 AM. Reason: NT guidelines
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Old 10-04-2012, 12:21 PM #3
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Welcome to NeuroTalk:

I'd like to expand on the B12 treatment and test results with you.
I strongly suggest you get the numbers of both your tests.
In the US, lab ranges are outdated, and "normal" is not really normal anymore. You should be at 400 US units or above to be considered low normal now.

The amount of B12 in a Bcomplex is very small. Many people cannot methylate (activate) the B12 in most vitamins which is cyanocobalamin. There are now inexpensive methylcobalamin tablets you can take. I'd recommend 5mg daily on an empty stomach, for 3 months. And then get retested. You should be at about 1000 for your serum reading by then.
Here is the medical site for doctors to explain the new (since 2003) treatment protocols:
http://www.aafp.org/afp/2003/0301/p979.html
If you were taking the supplements when you had your 2nd testing, that reading is not accurate and does not reflect what your status is without supplements.

There are people who follow the vegetarian diet and become low in B12. Also if you inherited the DNA error (present in about 10-30% of people) in activating B12 so it will work in the brain, and body properly, you cannot convert cyano in vitamins for yourself.

Methylcobalamin, the active form, is the cofactor for proper maintenance of sleep. It is necessary to convert serotonin to melatonin which is the sleep promoting hormone in your brain.
So if you don't have the methyl form in your brain, you will not sleep properly. All sorts of other neurological problems can result with low B12 in the brain.

Here is long and very detailed B12 thread here:
http://neurotalk.psychcentral.com/thread85103.html
It might be very useful for you to learn about this now, since you already tested low once for B12. It might mean you will need proper supplements for life, since you don't know why you were low to begin with.

Taking methylcobalamin daily correctly costs pennies a day. It is easy and the most inexpensive thing and corrects a very common problem in many Americans. You can find it online at iherb.com, Swanson's, Vitacost, or Puritan's Pride.

Quote:
Originally Posted by medicalmystery7 View Post
*edit* luduplo*edit* focused on his/her assessment that my issue is an anxiety disorder *edit* it's something that I strongly do not believe to be my main issue, and I feel very dismissed when I try to seek help and people tell me it's all in my head.

Anyway, my B12 levels actually were low when my neurologist ran blood work. He suspected that I had pernicious anemia, but after taking supplements for a month, my level was normal. I have been taking a B-complex supplement for several months now, and I have not noticed any improvements in my symptomatology.

Regarding brain trauma, I did hit my head really hard on a lamp table about 4 years ago, so it is possible that that incident contributed to my issues. However, I began experiencing symptoms several years before hitting my head. I did not partake in sports while I was in school, but I was involved with color guard with my school's marching band for two years. I was never hit in the head with a flagpole or anything like that during this time, however.

Up until a few days ago, I was not taking any medications. I have been taking a Chinese herbal formula that my acupuncturist gave me for the past about two months. A few days ago, I began taking Prilosec because my cardiologist wants me to try it and see if it clears up the nagging chest pain that I have. As I said, though, I've literally been on the Prilosec for a few days, not even a full week.
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Old 10-04-2012, 12:48 PM #4
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Quote:
Originally Posted by mrsD View Post
Welcome to NeuroTalk:

I'd like to expand on the B12 treatment and test results with you.
I strongly suggest you get the numbers of both your tests.
In the US, lab ranges are outdated, and "normal" is not really normal anymore. You should be at 400 US units or above to be considered low normal now.

The amount of B12 in a Bcomplex is very small. Many people cannot methylate (activate) the B12 in most vitamins which is cyanocobalamin. There are now inexpensive methylcobalamin tablets you can take. I'd recommend 5mg daily on an empty stomach, for 3 months. And then get retested. You should be at about 1000 for your serum reading by then.
Here is the medical site for doctors to explain the new (since 2003) treatment protocols:

If you were taking the supplements when you had your 2nd testing, that reading is not accurate and does not reflect what your status is without supplements.

There are people who follow the vegetarian diet and become low in B12. Also if you inherited the DNA error (present in about 10-30% of people) in activating B12 so it will work in the brain, and body properly, you cannot convert cyano in vitamins for yourself.

Methylcobalamin, the active form, is the cofactor for proper maintenance of sleep. It is necessary to convert serotonin to melatonin which is the sleep promoting hormone in your brain.
So if you don't have the methyl form in your brain, you will not sleep properly. All sorts of other neurological problems can result with low B12 in the brain.

Here is long and very detailed B12 thread here:

It might be very useful for you to learn about this now, since you already tested low once for B12. It might mean you will need proper supplements for life, since you don't know why you were low to begin with.

Taking methylcobalamin daily correctly costs pennies a day. It is easy and the most inexpensive thing and corrects a very common problem in many Americans. You can find it online at iherb.com, Swanson's, Vitacost, or Puritan's Pride.
Hi, thank you for your input.

Here's how the B12 situation played out:
When I went to my neurologist, he had no lab work on file for me, so he ordered basic labs. The next time I saw him, he went through my lab work and said that everything looked normal with the exception of my B12 level, which was rather low for my age. I mentioned to him that I had noticed at least an increase in energy when taking B12 supplements in the past, and he said that maybe supplements would help me, but usually when you see numbers that low at my age, it is because your stomach is incapable of absorbing B12,and you basically just have to be on B12 shots for the rest of your life. He told me to try taking B12 supplements for a month, and then we would test my levels again; if the number didn't budge, then we'd have to start on B12 shots, but if it did, then it's likely that pernicious anemia wasn't my main issue. I asked if the B-complex vitamins I already had at home would suffice or if I needed to specifically buy B12 supplements, and he said the complex would be fine. I also asked him if my former vegetarian diet could have been the reason my B12 level was so low, and he said not when you see a number that low.

A month later (technically it was closer to 3 weeks later because I wound up having to go into the office sooner because my left leg randomly went numb one day), he had the lab draw my blood again to recheck my level. He said he would call me in a few days and let me know the results, which he never did...I would up having to call the office numerous times over the course of the next three weeks before finally getting in touch with them to find out the results. *insert eyeroll*

Shortly after having my blood drawn the second time, I began seeing an acupuncturist. I told him about the low B12 level, and he suggested that I take B12 in Methylcobalamin form, so I went to the local vitamin shop and purchased a bottle of sublingual Methylcobalamin tablets. I took these for a couple of weeks but then accidentally spilled the bottle. I was going to replace it when I finally got in touch with my neuro office and was informed that my level was normal this time around, so I figured that my complex tablets were sufficient if my level rose into the normal range when I was just taking those.

I suppose it wouldn't hurt to purchase another bottle of the Methylcobalamin. I doubt it's going to be the answer to all of my issues, but it would be pretty neat if it were.
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Old 10-04-2012, 01:14 PM #5
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Lightbulb

You need to get the results of your B12 tests in numbers.... "normal" is not sufficient. Lab ranges in US report levels of 200 as "normal" and that is now known to be too too low. Even the cut off of 400 is low for anyone with neuro symptoms. Read my thread that I linked for you. Then you will understand, more clearly.

Most doctors do not understand or treat low B12 according to the new information available now about it.

But that is YOUR decision. It is a basic fundamental supplement for your nervous system. And in the end you will be responsible for maintaining it for the rest of your life.

When you get the methylcobalamin replaced make sure you take it on an empty stomach. Most is dissolved in your saliva and you swallow that. It will be absorbed then passively (without instrinsic factor from the stomach being needed) in the small intestine. But if there is food and fiber present, then the micrograms which are very tiny are absorbed into the food and move along past the absorption site and are then lost. So EMPTY STOMACH assures oral absorption. Very little is absorbed under the tongue, in reality.
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Old 10-04-2012, 01:21 PM #6
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Quote:
Originally Posted by mrsD View Post
You need to get the results of your B12 tests in numbers.... "normal" is not sufficient. Lab ranges in US report levels of 200 as "normal" and that is now known to be too too low. Even the cut off of 400 is low for anyone with neuro symptoms. Read my thread that I linked for you. Then you will understand, more clearly.

Most doctors do not understand or treat low B12 according to the new information available now about it.

But that is YOUR decision. It is a basic fundamental supplement for your nervous system. And in the end you will be responsible for maintaining it for the rest of your life.

When you get the methylcobalamin replaced make sure you take it on an empty stomach. Most is dissolved in your saliva and you swallow that. It will be absorbed then passively (without instrinsic factor from the stomach being needed) in the small intestine. But if there is food and fiber present, then the micrograms which are very tiny are absorbed into the food and move along past the absorption site and are then lost. So EMPTY STOMACH assures oral absorption. Very little is absorbed under the tongue, in reality.
I have wanted to look at my lab work for a while, and I was planning on requesting a copy of all of my numbers at my next visit. Getting ahold of those may be difficult now, though, because I actually just cancelled the upcoming appointment I had with my neurologist and asked my GP for a referral to another one because I don't feel like the current neuro listens to or takes me seriously. So it may be kind of awkward to walk in there and be all, "Hi, it's me. The woman who no longer wants to see you and is seeking a second opinion. Can I have a copy of the lab work you did on me?" But I guess I am entitled to see my own numbers regardless. I have a cardiologist appointment at the same medical center next week, so I'll call in ahead of time and ask my neuro's assistant if she can print off a copy of my lab work to pick up while I'm there. Then I'll let you all know what my numbers were.

I've actually been taking my B-complex on a full stomach because my multivitamin makes me very nauseous if I take it on an empty stomach, so I figured there was a chance the same would be true with the B vitamins. Thanks for letting me know that I should actually be taking it on an empty stomach.
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Old 10-04-2012, 01:51 PM #7
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Lightbulb

You can call on the phone and ask for the test results. Many doctor's offices will do that.

The B-complex has many things in it...and many people may have issues with an empty stomach.
They typically do not have high dose B12 in them however. If you check your label, you'll see 100mcg or less. The RDA for B12 is2-4mcg/day.

You were really not on your supplement long enough to affect your present neuro symptoms. B12 is stored in the liver, and the movement of it into the spinal fluid and hence into the brain is determined by the blood levels you have. If you are at the old normal 200-250 units in serum, you won't be pushing much into the spinal fluid. Keeping your levels at 1000 will be more effective in getting that B12 into the brain.
1000mcg of B12 is only going to give about 10-13 mcg absorbed.
So the small dose of B12 in a standard B complex is not going to do much. B12 on an empty stomach ALONE does not upset anything.

Another thing that will lower B12 and ruin the methylation process in general is nitrous oxide. This can be found in dental offices when having dental work, may be used as a pre-sedative for minor medical procedures, and also inhaled recreationaly by young people attending RAVEs. Also significant at RAVEs is use of ecstasy and this is very damaging to the brain, and new studies show some permanent damage from this drug alone.

So when you get your methylcobalamin replaced, do 5mg daily on an empty stomach, and by the end of 3 months, you may start seeing some improvements, if that is your main problem.
You should see better and more normal sleeping patterns by then too at least.
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Old 10-04-2012, 02:38 PM #8
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I second MrsD about the B-12. You need to know your numbers. Your B-12 should be about 1000 pgs/mL. You should also check your folate and Vit D. Folate should be 20 or above.

The purpose of the B-50 complex is to get the other B's. Just B-12 will not give you maximum benefit. You also need B-6 and thiamine (B-1) plus all the other B's. A good multivitamin like GNC MegaMen will also add the others supplements your body and brain needs. Any strain on the body creates a strain on the brain. The various minerals, especially the trace minerals are needed. Check the total niacin (B-1) in the B-50 and multi. You probably need about 500 mgs per day. A strong dose of all the anti-oxidants is beneficial.

I use the cheap pill form of B-12. I take enough to keep my B-12 level at 1000 even if I am not fully absorbing the form I am taking. If I took sublingual drops, the extra step in my routine would likely cause my consistency to falter. I take 380 mcgs and my blood level is good. Who cares if I am only absorbing 100 mcgs of the 380 mcgs I take.

B-12 and folic acid help the blood brain barrier function properly. It takes about 2 months of a consistent nutritional regimen to begin to see a difference. The brain has to detoxify first before it can start to use the additional nutrition.

I have been taking tumeric extract for the past 2 months and it appears to be making a difference. It has cumin to help the brain's oxygenation and metabolism. I used to have body twitches when I sleep and they have stopped.

Regarding your stomach, there are a few areas in the lower neck/upper back that can get messed up and cause stomach/esophagus problems. I had esophageal spasms and acid reflux the was resolved by a chiropractic adjustment to C-6 to T-2 area. The first adjustment resulted in relief within a few hours. I needed to continue treatment for a while to help the joint stabilize. I also get some relief by icing the upper back. My back never hurt but sometimes felt a bit stiff. The chiro found the problem using 'leg check' diagnostics. Once he worked his magic, voila. Much better.

Some musical instruments cause a postural strain that can become chronic. You may have other activities that put a strain on your spine. The head bump may have strained your back/neck. The head bone IS connected to the neck bone as the song goes. Injured the head and don't forget about the neck connection.

The anxiety issue mentioned by luduplo is valid. Many neurological dysfunctions cause anxiety like processes in the brain. This anxiety is not a psychological 'worry wort' anxiety but rather a malfunction is the way the brain is processing stimuli. The sensitivity to stimuli is due to the brain not being able to shut out or ignore stimuli that a normal brain can easily filer out.

You said you symptoms are:
<I have been experiencing progressively worsening neurological symptoms in addition to some other issues like heart palpitations, frequent urination, and a constantly rapid pulse. >

This can be anxiety as the brain tries to deal with too much stimulation. It enters a flight or fight phase and pays extra attention to body sensation. It releases adrenal hormones that cause this over-stimulation.

I can not go to sleep if I have the slightest sensation from my bladder. I have to sleep in cotton so I have the same tactile and temperature sensations everywhere. This is a brain malfunction, not a psychological anxiety.

<Some of my neurological symptoms include 24/7 localized pain on this one spot on the back of my head, balance issues (I can't stand still because I begin to stumble, so I have to fidget around), difficulty remembering words, typing the wrong word (in my school papers, I would mean to type "minute" and wind up typing "clinic." stuff like that), difficulty processing new information (it's hard for me to watch films or read books because I forget what happened earlier in the plot and which character is which, etc), very poor concentration, poor short-term memory, smelling burning smells that no one else can smell (haven't had this in a couple of years, though), biting my tongue and/or clenching my jaw when about to fall asleep, and tremors in my hands and tongue, and sensitivity to fluorescent and flashing lights.>

These can are be tied to an organic neurological problem. I have all of these problems except the balance issue. I only have balance issues when my eyes are closed. Again, this is evidence of an organic brain dysfunction.

The diagnostic test that would be useful is a full NeuroPsychological Assessment. These are to test and measure the cognitive, memory and processing speed functions of the brain. It usually includes some basic psychological tests to determine it there are conflicting psychological issues but they are not the main focus.

I bet you have a few dysfunctions such as:

A limited digit span. This relates to how many items or issues the brain can process at the same time. Most people have a digit span of about 8. Mine is 2 or 3 on bad days but can be as high as the high teens on my high functioning days. I bet yours is between 2 and 4 when you are struggling.

Poor visual memory. This makes it difficult to keep track of characters or plots in a story. I can't read fiction at all any more. I get lost trying to keep track of the characters. My visual short term and immediate memory is in the bottom 5 to 12% of the population.

I used to have the jaw clinching problem so bad that I was destroying my TMJoint. I now take gabapentin (Neurontin) to help my body release the muscle spasms that were happening when I start to fall asleep.

So, I do understand all of your symptoms. They are real and explainable. Hopefully, you can get improvement with some help and nutrition.

What is a normal day like for you? Are you still in school or starting your career? How busy is a normal day? What field of work are you involved in? Some work/study situations can be metabolically toxic to the brain.

mrsD mentioned nitrous. Have you had any general anesthesia for surgery in the recent few years?

Have you had any personality changes lately? Maybe less patient and easier to become irritated?

It would also be worthwhile to get a full hormone panel done. The complete panel is about $600 to $800 if done properly.There is a referral system to find a hormone specialist in your area at https://www.womensinternational.com/..._referral.html Most doctors use a shot gun approach to hormones. Many need a more targeted approach using bio-identical hormones. If you hormones are out of balance, this will be the best money you have ever spent.

We are here for you.

My best to you.
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Old 10-04-2012, 07:12 PM #9
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Hi,
Welcome to the forum! As others have mentioned be sure to take vitamin B12 1000 mcg. once a day, and also keep track of your sz. and take note of they happen during a low pressure in the weather this often can trigger sz. for some people. I have absence, complex partial, and simple partial sz. and take my word the best thing for you to do is see an Epileptologist at an Epilepsy Center you will get more help from them than any neuro or GP that you see. I have a feeling you may be photosensitive meaning certain colors will trigger sz. for you, this happened to me then I had a special e.e.g. done where they flashed different color strobe lights one at a time and they found 3 different colors were triggering sz. for me. If you have a rapid heartbeat this could also be causing your sz. heart problems, lack of sleep and stress are the 3 main things that can trigger sz. for many people. I've had epilepsy 40 yrs. now and I've learned a lot. You need to be admitted into the hospital where the Dr. can run a bunch of tests on you like a video e.e.g., MRI, SPECT, and PET Scan along with CT scan and blood work. If insurance is a problem you can call the Epilepsy Foundation if you in the USA at 1-800-332-1000 and they can help you out or give you info. you need to cover the medical costs. I can't help but wonder if you have a sleep disorder, the brain is the most active when we are asleep and according to my neurosurgeon whatever a person dreams about is something that they can relate to that happened earlier that day. Lack of sleep triggers sz. and you may have sleep apnea which can cause epilepsy. Ask anyone that lives with you if you snore loudly or stop breathing when you are sleeping these are signs of sleep apnea. If you use a cell phone this can cause short term memory loss shrinking the hippocampus of the brain where short term memory and learning is. This could also be what's causing your problem. I found out I was cell phone sensitive meaning when I'm around others using cell phones it will cause sz. for me do to the frequency that they are using. Start the ketogenic diet this diet has been out since 1927 and it works great decreasing or stopping sz. for people and it's better than taking a lot of med. To find the right med to help you tell the Dr. to do a DNA test on you they will be able to match your DNA up with the best med to help stop the sz. with the least side effects. I wish you the best of luck and May God Bless You!
Sue
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