Hallucination-like experiences? Seizures, perhaps? Scared and seeking input.
 

For the past about 9 years of my life, I have been experiencing progressively worsening neurological symptoms in addition to some other issues like heart palpitations, frequent urination, and a constantly rapid pulse. 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.

The one other symptom that I have mostly kept to myself because it's embarrassing and because I don't want to be stigmatized as crazy is that when I'm really tired or about to fall asleep, I sometimes have these hallucination-like experiences or something. I don't know of a better term to describe them, but they're not hallucinations in the sense that I see animals walking around my room that aren't there or anything like that. Rather, I just kind of start imagining people saying the most random of things. I don't think the people are really there or anything like that. It's very similar to when you're playing out a conversation you had earlier in your head except it's not conversations I've had in the past, and I can't control it. Hard to explain, sorry. This happens either when I'm beyond exhausted but forcing myself to stay awake for whatever reason or when I'm laying in bed with my eyes closed just about to fall asleep. I used to pray before I went to sleep, but I stopped doing it because this would happen and make it impossible to do so.

Sometimes I also will have dream-like experiences where I'll fall asleep, have a really vivid dream for a couple of minutes, and then suddenly jolt awake...I know these aren't actually dreams, though, because they occur within a few minutes of falling asleep, and it is my understanding that actual dreams don't occur until you've been asleep for a while. I know they occur within a few minutes of falling asleep because there have been times where I looked at the time on my computer, saw that it was, say, 10:30 p.m., fell asleep and had a vivid dream about whatever, and then jolted awake and saw that it was only 10:37 pm or so. Sometimes I also jolt awake in the middle of the night with this weird panicky feeling that's difficult to describe...I've noticed that, when this happens, my pupils do not respond to light...it subsides after about a minute or two.

I've read that this can all be related to a seizure disorder, but my neurologist hasn't ordered a sleep study or anything like that to test for seizure activity because he doesn't think there's anything wrong with me. I was going to just tell him that if he didn't test me for seizures, I was going to see someone else, but then my dad informed me that the testing is expensive even after insurance, and I probably can't afford it on my own. He won't help me pay for it because he doesn't think there's anything wrong with me either. Even if he would, though, I'm almost afraid of having the testing done because if it came back negative, then that would give him and my doctors even more reason to accuse me of just being a hypochondriac.

I've been to two GPs, an internist, a neurologist, a cardiologist, a psychologist, and an acupuncturist, and no one with the exception of the acupuncturist will even really listen to me. They all just assume that I'm too young at 23 to have all of the issues I report. The neurologist did test for a brain tumor, but once he looked at my scan and didn't see one, he was just kind of like, "Welp, guess you're healthy then." He said he saw volume shrinkage on the scan but just shrugged it off as insignificant. My train of thought is that my brain didn't just shrink on its own...something is going on that's causing that, and it would explain why I feel so cognitively deficient these days...but he doesn't seem to think there's any reason to look into it further. He did ask if I had a history of drug or alcohol abuse because that's usually what causes that in people, but I have neither; I've never even been drunk a day in my life.

Anyone have any input on what can be going on? I'm really scared, and no one will listen to me. Thank you :)

Hi, I just read your post, none of this seems to be giving you anxiety, is it? Do you have panic/ anxiety attacks at all? You've been given a lot of help already and seen more professionals than most people with neuro issues. Your brain scan was clean, but one doctor thinks you may have volume shrinkage, which might just be his take on the scan, but since you have no condition or history of drug/ alcohol abuse, your brain probably has not shrunk, ever.

Have you suffered from any head trauma or concussions in your life, do you play any sport? Have you had any surgeries/ is your overall health good? and what about your dental health?

If you have no head trauma and you are otherwise healthy to your knowledge, you seem to have a generalised anxiety disorder. Never underestimate the power of anxiety, it causes havoc and often it comes with cognitive troubles, like the ones you have mentioned. The vivid dreaming is an occurrence that results from over-tiredness, stress, anxiety, over-thinking and sometimes insomnia. These things often causes you to awaken in the night in a panic, and jolting awake after only a small amount of time sleeping, and in my experience, pupils rarely respond well to light when in panic.

Other than that, all I have to say is you are having neurological symptoms that are obviously bothering you, but your doctors think they don't add up to a diagnosis and they very well might be correct about that. If you have had any head trauma (AT ALL) you might have your answer. I don't think you are experiencing any form of seizure activity, usually people suffer from the same type of seizure all the time, and nothing you described sounds like you are having seizures.

But maybe another person on the forum with more experience with seizures might beg to differ.

- Yours

Great to meet you!!
 

medicalmystery7,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sorry to hear what you are going through at this time. Then you to go on with these signs check with an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are usually at University or big hospitals. I was lucky to go to one, there it didn't cost as much, because of the credit of the medicine because it was a school of medicine.

Your need to cut out the carbs and starch foods because they will trigger seizures. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:


:hug:

Thank you for your suggestions. I recently had someone else suggest I go to a school of medicine as well, so perhaps I should give that a shot. I'm just so sick of throwing away money on doctor after doctor and traveling all over the place just to be told that there isn't anything wrong with me. It's very wearing.

I did try cutting out carbs twice, and both times I did feel a lot better. However, about two weeks in, I also almost passed out both times and had to discontinue the diet. That was when I was a vegetarian, though, so my low-carb options were very limited. Perhaps the diet would work out better for me this time around.

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.

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.

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.

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. :)

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.

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.

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

Gosh, so much to respond to! Sorry if I miss anybody/anything. I'm feeling really scatter-brained right now.

I actually did try asking for my results over the phone, and she said she couldn't relay all of my numbers to me over the phone and I would have to come pick up a printout of my results at the office.

As for the B-complex, I think I'd like to continue with that in addition to the methylcobalamin. Both the woman at the vitamin store and my acupuncturist said that it was important to get all of the B vitamins in because they support and work with one another. Perhaps I should cut my multi-vitamin out,though because I'm beginning to feel like a pill popper between the B-complex, methylcobalamin, herbs, and Prilosec.

I haven't had any dental work in five years; I need it, actually, but have been putting it off because I've been spending so much money on doctors. Definitely never been to a rave either; I'm afraid to leave my house most days and definitely would not do THAT to myself, heh.

I'll try the methylcobalamin. A more regular sleep schedule sounds nice; my sleep is really inconsistent and just awful right now.

I didn't play a musical instrument. I was part of the band's color guard, so I did flag and dance routines on the field.


Well, yes. I know that I am an anxious person. I'll never deny that. My issue is when people try to tell me that my ONLY issue is anxiety and try to dismiss me as a mere headcase. There is something that feels very biological rather than merely psychological about the type of anxiety that I experience. Feels as though something is severely out of whack with my nervous system that is causing me to feel on-edge and like, until that is addressed, no amount of therapy in the world is going to help me. The psychologist I went to tried breathing and relaxation techniques with me, and none of those ever did anything for me.

I would like to do something like this. I think it would highlight a lot of the issues I have thinking in real-time that just checking my reflexes and telling me to smile aren't going to illuminate. I was hoping my neuro would do something like this, but he didn't.

YES. I've noticed that it's very difficult at times for me to keep track of more than one or two concepts. Like when trying to diet, I have difficulty keeping track of everything I've eaten throughout the day to assess whether I've been on track or not. Or if I'm at the store, I have difficulty remembering all of the things I need to get. This also makes me very reluctant to try out the 3424242 suggestions people like you guys give me because it's really hard for me to keep track of everything I'm supposed to try. Makes me feel very overwhelmed, so I just say "Forget it all" after a while.

I do think I have issues with this. I used to have severe difficulty recalling new faces (I could recognize people I have known for at least a few weeks, but new people all looked very "generic" to me). I remember one time, I was with my family at a restaurant, and my sister told me to get the waiter's attention. I was like, "But I don't know which one is our waiter. They all look the same to me." I don't have this problem as much anymore, though.



No, I graduated with my BA last December and have just kind of been sitting around my house wishing I could start my career as well as go back to school for dietetics ever since. I do freelance jobs online, which I hate, and which is very inconsistent, but I'm very hesitant to work outside of the home because I'm embarrassed by my cognitive problems and think I would wind up screwing everything up and getting fired.

I have not.

Yes. I tell people that I have no patience, and I feel bad about it, but I can't control it. I'm not impatient because I'm just a brat...I'm impatient because my body makes me be. I am very irritable, too, because I get frustrated with myself and with people not understanding why things are so hard for me.

Thanks for the suggestion, and thank you :)



Well, right now, I can't say with certainty that I do have seizures. I'm going to ask the neurologist I'm seeing hopefully soon to test me for them, but I don't think I can get to an epileptologist right now. I looked online, and there aren't any in my area. Plus I'm pretty certain my GP is getting really fed up with me asking her for referrals because she doesn't think there's anything wrong with me and sees it as me just being hysterical and diagnosing myself with things.

MMystery,

It sure sounds like you have Post Concussion Syndrome (PCS). Your symptoms are classic. Even a small amount of anxiety makes PCS much worse. Plus, PCS makes anxiety much worse. The physiologicallly caused anxiety is beyond any psychological therapy. Reducing psychological anxiety can be a big help as it allows one to better focus on the physical causes of anxiety.

Poor diet and hormones can make PCS much worse. Dieting can also make it worse by interfering with proper brain metabolism. The fasting can cause a low blood glucose level. The brain needs essential fatty acids, the best source is pork because it also has the highest amount of Broken Chain Amino Acids (BCAA's)

The multivitamin is important because it has the other nutrients you need. You can either feel like a vitamin pill popper or end up needing medication to help your brain settle down. You need calcium, magnesium, phosphorus and vit D for your brain. I take 20 pieces every morning. I have been for decades. Some of my supplements are for arthritis and other health objectives.

It sounds like the Prilosec is just a 'try this and see' idea. It is the first thing I would consider stopping. Throwing stomach acid off will effect nutrition.

My best to you.

Perhaps you're right. The only thing is that, as I stated earlier, I've been having these issues for around 9 years, and it was only about 4 years ago that I hit my head on the lamp table. Maybe doing that exacerbated a pre-existing issue I had, though. Sounds scary in any event, although I guess it's better than a brain tumor or chronic Lyme (what my acupuncturist suggested it might be).

I don't "fast" when I diet. I just try to eat healthy foods. I need to lose weight. I'm only 5'0" and weigh 140 lbs. I do not, however, eat pork. The only meats I eat are chicken and turkey, and I'm not particularly willing to change that. At the moment, I'm also on this very restrictive diet that my acupuncturist suggested I try. I can't have bananas, oranges, potatoes, wheat, soy, dairy, processed foods, etc. I don't feel as though I'm deprived by any means, though. I'm eating a lot of fruits, veggies, poultry, brown rice, quinoa, beans, and nuts.

Yeah, I'm not thrilled about taking the Prilosec. I figure I'll take it until I see the cardiologist next Thursday, but I don't feel as though acid reflux is the root of my chest pain. My chest pain started after one day back in '09 when I spent 14 almost consecutive hours on the beach in the heat (I was an extra in a movie they filmed on my beach) and woke up with a racing pulse and chest pain the following morning. I think I'm just gonna kind of stick with this cardiologist until he does the stress test and ultrasound of my heart he plans to do on Thursday, and then if he doesn't detect anything, I'm just going to focus on the neurological aspects of my condition.

As for the whole pill popper thing, I just worry about how all of these substances are going to interact in my system. I'm afraid I'm going to overload my system or something.

Just posting this here as a reminder to myself to write up a full list of symptoms to bring with me to this new neurologist. I've kind of given up on doing this because doctors never seem to want to deal with all of my symptoms. I gave my GP a page and a half list of symptoms, and she handed it back to me and said, "Sounds like anxiety." I brought the list with me when I went to the internist I saw once, told the nurse I had a list of symptoms if he wanted to look it over, and she said, "Nah." So I began to feel stupid for even preparing a list. I'm over that nonsense, though. This lady is going to listen to every single issue I've experienced whether she likes it or not.

Doctors have a term for this type of long list of symptoms presentation...
they call it "the organ recital"... and along with that term is an immediate diagnosis of mental problems by most of them.

Please think about this before you try a long list of symptoms on a new doctor. When one has a complex set of symptoms and problems, it seems natural to list them all. But doctors don't see it that way...they see obsession.

Choose your presentation carefully, and focus on loss of function, lifestyle effects, etc.

People with hard to diagnose medical issues may visit many doctors, and mostly to no avail. Recently we had a poster on neuropathy forum who had been to 16 specialists, and still has no diagnosis.(and no treatment I might add).

I am not implying that this is correct or a good thing. But it sadly happens to be what is real in the medical field today.

This has certainly rung true in my experience, which is interesting because I've had people on several other health-related forums tell me to prepare a list of symptoms. It's completely not fair to brush me off like that when I'm reporting some pretty alarming issues. I always say I'm going to take my time and explain everything and explain how I really need somebody to listen to me because my life is a living hell right now because of all of this, but then I go into the examining room, and they rush me. My (now former) neurologist doesn't even know about a good half of my symptoms because I never had a chance to tell him about them. This is probably why the acupuncturist I'm seeing was so appealing to me even though I'm not convinced anything he's doing is ever going to have any benefits (he said it will take months, so I've basically decided to stick with his protocol until the end of the year). He gave me a form to fill out and told me to mention EVERY symptom I've ever had, and then he took the time to sit with me and go through all of them for at least an hour. And he didn't accuse me of making stuff up in my head at the end of it!

So.... I think you have two obvious options here:

1) pursue the epilepsy angle...and get the proper testing from a specialist in epilepsy.

2) find an integrative doctor...this is a new specialty and these types of doctors see the "whole" person. Google your location and the word "integrative" doctor or specialist.

Isn't it possible to have seizures without being classified as an epileptic, though?

I wouldn't even know how to get started with seeing an integrative doctor because, as I said earlier, I think my GP is getting sick of me asking for referrals. Within the past week, I've already asked her for a referral to a cardiologist and to a new neurologist. There is an "integrative medicine" doctor who is somehow associated with my acupuncturist, but I'm really confused on their connection. The clinic website mentions the both of them in the "About Us" section, but I've never seen the other guy around the clinic. I guess I can ask acu-man, but I don't want to come across as "I don't really think you know what you're doing, so why don't you tell me more about this other guy?" Apparently, I care too much about what practitioners think of me.

Please try to avoid needing a diagnostic term. Epilepsy is a very broadly used term . My doctor said my seizures were not epilepsy but did not define them otherwise. I understand you desire to not be diagnosed as epileptic. It has a bad history.

If you are not pursuing other angles, a specialist in integrative medicine would be good. If you have a referral from your acupuncturist, you should give it a try.

Just try to do as mrsD said and go easy with the list of symptoms. There is another term doctors use, A cyberchondriac. It is a hypochondriac who researches and defines their symptoms and possible disease on the internet.

I got somatoform written in my medical record and struggled to get any doctor to pay attention ever since.

Give some general symptoms and let the doctor ask the questions before you say anything else. Let the doctor discover your symptoms, if you can.

Thanks for the responses, all. I don't have anything against being diagnosed with epilepsy if I have it. I just think it's a tad presumptive to request to see an epileptologist when I have no clue if I have it. I don't see how that's much different than telling my doctor I need a referral to a cancer center because I think I have cancer based on articles I read on the Internet. Especially since I've never had a single doctor take me seriously when expressing my concern that some of my symptoms may be related to seizure activitiy.

Anyway, I hope my GP gets back to me soon with the referral to the new neurologist. And I hope she'll let me try having an MRI done with and without contrast again (Did I ever explain that situation? I only had a CT scan done without contrast). I'm not convinced that there isn't some type of tumor or lesion or something on my brain that's causing a specific spot on my head to hurt 24/7 in addition to all of these cognitive problems. In any event, I hope someone can come up with something to do to help me soon; I hate literally having nothing to do other than cry or, if I'm lucky and able to, sleep so I don't have to think about everything.

*reminder to self to pick up the B12 tomorrow after my acupuncture appointment*

mystery,

Let the specialist choose the type of diagnostics to do. An MRI with contrast or an MRI/MRA or even PET can all image different things at different resolutions. The MRI/MRA is a simple non-invasive imaging system.

A Diffusion Tensor Image is a higher resolution MRI that is also use for specific symptoms.

My internist and neurologist both wanted to do MRIs with and without contrast, but I couldn't do it at the time. It's a long story, but basically, I hid my symptoms and avoided doctors for about seven years because, if I had a brain tumor, I didn't want to know about it because I didn't want to have brain surgery. (and back when I was still under eighteen, it could have been forced on me) So I spent so much time avoiding the diagnostic testing that when I was finally confronted with having it done, I went into panic mode and just said forget it, I'll just live like this. So my neuro said we could try a CT scan since it would be over much quicker. Then the nurse freaked me out by telling me about all of the side effects that injecting the contrast into my veins could cause, so I didn't want to do that either.


I'm past that not wanting to know stage now, though, which is why I said I want to see if they'll let me try the MRI again. I saw the images from my CT scan without contrast, and they're such poor-quality images. My dad looked at them too and said, "There's no way they can diagnose or rule out anything with those."

In other news, bought some more methylcobalamin today. Kind of worries me that I'm now taking a B-complex, the high-dose methylcobamin supplements, and a multi-vitamin that contains B12, but you all don't seem to think it's a problem, so that's good.

There is no upper limit to B12 taken as a supplement, listed by the FDA.
Also orally only 1% is absorbed per dose. So while it looks like alot on paper, it is really small in reality.

Ideally it is 1%...if you take it on an empty stomach. If you don't, nothing may be absorbed.

1%? That's crazy...dang.

Oh, and feel free to move this thread over to the brain trauma subforum or wherever it best belongs since it's kind of veered off the topic of seizures if you want, mods.

mystery,

It sounds like you need to get a grasp on the applicable information. If you look at your B complex, multi-vitamin and methylcobalamin, you can find out how much total B-12 you are taking. Since the B-12 in the multi and B-complex has low absorption, it should be added up separate from the methylcobalamin. Note that mcg is 1/1000th of mg. 1 mg is 1000 mcg. The B-complex likely has 50 mcg of B-12. The multi likely has 4 to 10 mcg of B-12.

I take 380 mcgs of B-12 daily. My blood B-12 is about 1000 pcg/mL which is good.

When you get anxious about a test's side-effects, you need to look at the incidence of that side-effect. Most major side-effects only effect a few out of a hundred patients if not much less.

I have had CT's, MRI's, MRI/MRA, PET, old school brain scan with mercury contrast (1970), EEG's qEEG's etc. They are nothing to be afraid of.

They often rule out the scary problems right away. Tumors usually show up easily so they are easily ruled out. It is finding the other conditions that can be difficult. In my case, they could not image any problems or defects. Only the qEEG showed a problem. A qEEG is a harmless procedure similar to a generic EEG.

You tendency for anxiety tells me you need to be up on brain vitamins and supplements. The brain is much better with anxiety when it gets good brain nutrition.

My best to you.

The complex has 15 mcg, and the multi has 6 mcg. Considering the methylcobalamin has 1,000 mcg, those numbers seem negligable. I do wonder, now, though, if I should get rid of the B-complex since it has so many other things in it that are also in the multi. I guess I'll just keep taking everything.

The thing with the tests that a lot of people don't seem to understand is that it's not the tests themselves that I was afraid of (with the exception of the contrast thing). It was/is the results. But I'm kind of past that now...I think. I used to think knowing was worse than not knowing, but now I see that not knowing is much worse. I just wish my GP would hurry up and set up my appointment with the new neurologist. I hope it's not another situation where I have to wait months to see her.

I got a copy of my lab work, and I'm confused because my B12 levels were never outside the abnormal range. They were on the lower end of the spectrum, but they were still within the normal range on the paper both times. My neurologist made it sound like the number was REALLY REALLY low the first time. Meanwhile, he told me that everything else looked normal, and yet there are six things that are marked either "Abn: L" or "Abn: H" on here. They're not THAT outside of the normal range, but they still are. :confused:

Anyway, my first B12 reading was 344, and my second reading was 483.

So you are borderline with B12. I would continue with the methylcobalamin, since something is making you low.

If you have your copies, is the MCV elevated? That is found in the CBC differential. MCV is elevated when B12 levels are not adequate to make normal red blood cells. It often is an early marker for problems. In your case it may be only slightly out of range. Often doctors ignore it and that is a mistake for the patients.

MCV is within the normal range (but it is on the higher end of the spectrum. It's 90.2. I don't know if that's significant.

I posted an image of all of my results on a Lyme forum a little while ago, so here is the link in case anyone thinks it'd be helpful to look at them on here.

http://i50.tinypic.com/2rr1jjo.jpg

Some tests are best done over, when slightly out of range results come in. This is because the lab may not have good calibration that day for certain things.

Also, you should be well hydrated when having a blood test, because if you are not, concentrations may be "off".

Your MCV is a bit high, and may be related to the B12 numbers.
Your potassium is low. Either you are not eating properly or losing it somehow. (diarrhea or thru the kidneys). When a person first starts B12, there is a short period of time that potassium is used up quickly making new red blood cells.
This may be your problem, if the potassium was done after you started the B12. I don't see dates on those tests.

Typically doctors don't respond to mildly out of range values, unless they already have a diagnosis in mind.

I believe that potassium level was done before I started the B12, but I'm confused by the dates on these tests, too. The setup of the paperwork almost makes it look like the higher B12 reading was the FIRST reading, and the lower one was from the retest. I don't know, though. I'll have to ask for clarification.

When I go see my new neurologist, I'll ask her if we can run my blood work again.

Thanks for the input!

Stop the B12 supplement for about a week before any testing, so it won't show up as high, just from the supplements.

Noted! :)

...

Hi all, me again.

I don't really remember where I left off when I last posted, but I started seeing a new neurologist a few months ago. I've only seen him twice so far. He doesn't feel like it's necessary to see me more than every few months; my next appointment is 6 months away. He ordered an MRI of my brain, and a UBO (unidentified bright object) showed up on it.
He didn't have much to say about it, though. Just that he would order another MRI in 6 months to see if it changed, but for now, it's not enough to warrant a diagnosis of MS or give me any type of medication.

I'm really frustrated. There's not much left for me to do. I'm sick of family members rolling their eyes at me every time I start seeing a new doctor, and I don't really have any reason to believe that seeing anyone else will be beneficial seeing how I've already been through a slew of doctors.

Maybe I'm just crazy like they keep telling me. All I know is my head has been throbbing for the past at least 8 hours, I kept forgetting why I was at the grocery store earlier, and I kept typing the wrong freaking word when I was trying to have a conversation with my coworkers over Skype earlier, which was really frustrating and embarrassing.