On Wednesday, I had a seizure at school. I think it could be Lyme-related, but I think what triggered it was looking at a really bright computer screen.
They called an ambulance and I went to the hospital. I fell on my face during the seizure, so they did an x-ray of my face.
They also did a CT scan of my head, a urine sample, and a blood test. All was normal.
I have an appt. with a pediactric neurologist on Monday and I'm going to get an EEG.
I don't know if this doc knows as much about Lyme as the people in the office say she does.
What else should I ask? Are there any more tests or things like that I could ask for while I'm there?
I also have problems with memory and concentration and some psychiatric problems.
Any input would be appreciated.
-------------------- "Life doesn't have to be perfect to be wonderful."
I am sorry you had to go through that. While I don't have any of the info. you are asking about, I just wanted to tell you that I think you are very brave. Are you the girl who posted a little bit ago about a Lyme presentation for your school?
If so, I want you to know that I went to your web page, and it was what you said on there about your story that finally made me 100% sure I had to believe in my daughter. She is 11 and just got diagnosed. For several months I just put her off..... Thanks for being so brave about your story.
I hope someone answers your other questions, and I am praying for your health.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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posted
I'm sorry this happened to you. Keep us posted, OK??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Some hints. I am not a doctor, but have lots of personal experience in this area. What I'm asking you is sort of my checklist that I ask myself when seizures sizzle me.
I'm just sort of talking to you here. Questions are just for your personal check-list. No need to reply.
Some things are just stuff I sure wish I had known long ago.
You may feel a bit of energy, but be careful not to overdo it. Your brain will thank you for rest.
1. see if you can turn down the brightness on your computer. Better yet, do you trust a family member or friend to check this thread . . . copy and paste to a word program and print it out for you ?
2. as you recover, the typical advice is to not be on the computer very long - or watch flashy TV right now - to give your eyes/brain a rest.
IF you have florescent lights at home, can you go back to the regular kind of light bulbs? Even the slight flicker of newer energy saving bulbs have been known to trigger seizures in some people. In the kitchen, I have two lamps and don't use my overhead tube lights at all.
3. Rest is key and if you feel like it, fun movement but don't wear yourself out right now. Listening to Mozart, yes, Mozart, can do lots to help your brain. Really.
4. Be sure to eat frequent, small meals low in sugar but with good proteins, good fats and slow carbs. Brown rice or whole grains ? IF you eat a dessert, be sure to have it after your meal and in proportion. (a lyme diet is a bit different, but for now, just be sensible). Apples and berries are good.
Great brain food: If you live near a Trader Joe's they have WILD salmon frozen and in cans. And their King Oscar Sardines in Fish oil are very good for my brain. I don't like them, but the little fishies help me prevent seizures, it seems, time and again. I add garlic powder and chives or parsley and just get them down.
Trader Joe's also has a very inexpensive organic whole soy protein powder with nothing else in it. You can add vanilla and stevia or whatever. It mixes very well in water. No blender needed.
AVOID TUNA - as it can be high in mercury. And many tuna products are loaded to the brim with a type of MSG - not good.
There are some lists that tell you, in order, which fish are best.
** (Can you get a "heavy metals" test ?) **
Backing up and, to confuse the matter just a bit, paramedics once told me that seizures take a lot of sugar and they felt I needed to eat some sugar as soon as I could afterward. Well, it's not that simple. But it's something to consider in an emergency if your blood glucose level has dipped into the hypoglycemic range.
you see advice on the lyme sites to avoid sugar for other reasons. But in an emergency, your brain needs sugar. Again, if you are diabetic or hypoglycemic check on what to do. Keeping stable levels is best.
Do you have a good multi-vitamin. Vitamin E, fish oils, B-vitamins are all good now - in the proper amounts. Vitamin C might be good, too as well as a mineral blend including magnesium and calcium.
5. avoid all diet sodas. Check your diet / cough drops / tooth paste. Is MSG (it has many forms . . . google for that) . .
or aspartame (nutrasweet) in anything you eat or drink? If so, be sure the MD knows that. They excite the nerves and are toxic - some people seem to do okay, but many sensitive folks can have neurological problems from that alone.
Avoid food colorings, too, and artificial flavors for the moment.
(sorry if I sound like I'm commanding you... .. just taking from all the articles I've read)
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I deal with seizures from sudden sound, flashes of lights - or flourescents - and sudden motion. And perfumed products and chemicals. So I hope some of what I've experienced or read can help stop this in its track for you.
Absolutely, I hope the doctor you are to see on Monday knows a lot about lyme or at least considers it.
It would be great if a friend or family member could locate someone who runs the closest lyme support group to you. Ask if anyone has gone to the doctor and you'll have a sense of her expertise.
While all you describe certainly can be consistent with lyme and tick-borne infections, it's wise to have a doctor look at that, but also at other possibilities.
Although looking at the bright screen may have triggered the seizure, if lyme or other TBI are going untreated, that could well be the underlying cause. Their are polarized screen covers available.
Seizures can also be triggered from dieting - or missing a meal - especially if blood sugar levels dip low.
Do you have the blood glucose levels the EMTs did before they put you in the ambulance ?
What was your potassium level from your lab work ?
What was your temperature at the school right after this happened?
(I don't care, but your doctor should have this info.)
Can you remember what was on the computer screen ?
Did something flash - or were things moving ?
How did you feel before this? Any nausea or foggy vision ?
Was there a sudden noise or motion at the same time ?
What kind of lights were on in the room where you were ?
Were other computers in your line of vision ?
Endocrine / hormonal shifts - or pain - can lower seizure threshold. Adrenal exhaustion, too.
Did you sleep well the night before? And the night before that ?
What had you eaten for breakfast that day, other foods before this happened?
When you stand up from sitting or lying, do you feel dizzy or light-headed? When you stand in line, do you wish you could sit down ?
Were you listening to a walkman - or mp3 player with headphones or earbuds at the time ? If so, to what ? Did it have a strong beat or strong bass pulse ? Was it something you've heard before or new to your ears ?
Do you grind your teeth at night? Any jaw pain ?
Again - just for your checklist - we don't need to know.
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magnesium sulfate as a shot - or other oral forms - might be helpful in the meantime. The Glycinate and citrate seem to be good for those in pain.
If you get blood work done, you might have them check INTRACELLULAR MAGNESIUM. If you are low, that itself could lower seizure threshold. Same with calcium levels.
If you have vertigo or other balance or inner ear trouble, there are specific tests. And inner ear stuff can trigger sensory seizures, too.
If you've been having inner ear stuff, Falling forward onto your face may suggest Tumarkin's phenomenon. Search: Tumarkin's at PubMed www.ncbi.nlm.nih.gov/sites/entrez
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Be honest, but very careful when mentioning psych. symptoms - you mentioned earlier. It's nothing to be ashamed of but in our medical system, once someone admits to even depression they may not be taken seriously. And be aware, that in the absence of stuff they can see, sometimes, that becomes a focus for a diagnosis and it's a label in your medical file.
Also, avoiding gluten and getting good vitamins - and minerals like magnesium can help lessen psychological symptoms - and so can the right amounts of protein, fats, and carbohydrates.
- All this not to freak you out, but just to give you strength to know there is most likely a logical explanation for this - even if no one can see it on certain tests. We cannot test everything.
You should also know that lyme and TBI can be the reason for many psych. symptoms and if the TBI treatment is successful, many or all of the symptoms resolve. Always be honest with your lyme doctor about all your symptoms. A true lyme doctor needs to know and will understand and see the big picture.
I am tempted, but will hold off finding the articles that link lyme and seizures. www.ilads.org ILADS, I'm sure you know about.
On this page, look to the left, see fourth down the on-line library.
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more random thoughts.
An EEG cannot measure all the parts of the brain and usually does not take into consider a messed up inner ear or liver that has too many toxins to process.
Also if you could get a FUNCTIONAL EEG and do whatever kind of studying you were doing on the computer when the seizure began - that might show how your brain works for certain tasks. A QEEG would be super-duper, but many MDs don't do those.
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You mentioned a racing heart in an early post, I think. This may be nothing, but can they test cardiac impedence or QT ? rather than a seizure you may have passed out. (Magnesium, calcuim and other minerals can help calm your heart in some cases. Be sure you are getting enough protein in your diet, too, for the L-carnitine to strengthen heart muscle.)
Neurally mediated hypotension (NMH) or orthostactic hypotension can also cause syncope (fainting). Sometimes fainting can mimic a seizure. Do you have enough salt in your diet? Sea salt is good as it contains trace minerals.
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If you give enough toxins to any person, seizures can result. Lyme is very toxic. (relax, there are things you can do to help that and treatment, even certain supplements if that's all that's affordable can help, under the care of a lyme doctor. There is some way to treat, but that's for a latter time.)
Back to what might have triggered the seizure. ?? perfume products. Have you just gotten any new fragrances ? New carpet ? A new perm or hair coloring ? New nail polish, etc.
Hint: it may help to avoid scents and cleaning chemicals as much as possible right now. If your family just got a new car, air it out some.
If you have a gas stove, be sure to use the exhaust fan before turning on and off and ventilate your house, upstairs, too.
I apologize for being so over the top and staggered here - hope it does not send you reeling, trying to cover all the bases. These questions are not meant to dive into, but one of the answers may be a link.
Best of luck. Take excellent care of yourself and I hope you find some fun and nurturing activities for this weekend. Relax if you can. Laugh if you can and know that this will be fine.
This little "events" can happen to anyone. Many people have one and that's it. They may never know why and it may never be a problem again.
Still, with all you have going on, I am so glad you want to learn more so that your care can be the best possible.
Hugs to you !
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[ 12. January 2008, 02:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
This article reviews research on the use of diet, nutritional supplements, and hormones in the treatment of epilepsy.
Potentially beneficial dietary interventions include identifying and treating blood glucose dysregulation, identifying and avoiding allergenic foods, and avoiding suspected triggering agents such as alcohol, aspartame, and monosodium glutamate.
The ketogenic diet [high fat, low carb] may be considered for severe, treatment-resistant cases. The Atkins diet (very low in carbohydrates) is a less restrictive type of ketogenic diet that may be effective in some cases.
Nutrients that may reduce seizure frequency include vitamin B6, magnesium, vitamin E, manganese, taurine, dimethylglycine [called DMG] , and omega-3 fatty acids.
Administration of thiamine may improve cognitive function in patients with epilepsy.
Supplementation with folic acid, vitamin B6, biotin, vitamin D, and L-carnitine may be needed to prevent or treat deficiencies resulting from the use of anticonvulsant drugs.
Vitamin K1 has been recommended near the end of pregnancy for women taking anticonvulsants. Melatonin may reduce seizure frequency in some cases, and progesterone may be useful for women with cyclic exacerbations of seizures.
In most cases, nutritional therapy is not a substitute for anticonvulsant medications. However, in selected cases, depending on the effectiveness of the interventions, dosage reductions or discontinuation of medications may be possible.
Seizures can be attributed to a number of causes including metabolic abnormalities, infections, nutritional deficiencies, or trauma. Emotional stress also increases the frequency of seizures. But most seizures occur due to unknown reasons.
. . .
In many cases of epilepsy, there is an association with celiac disease and cerebral calcifications. Gluten-free diets, a mainstay in the treatment of celiac disease, often reduce the incidence of seizures, especially if the diet is started soon after the onset of seizures.
The efficacy of the gluten-free diet in epilepsy appears to be inversely related to the duration of epilepsy before the diet, and to the age at the beginning of the diet. (12) The possibility of celiac disease should be investigated in all cases of epilepsy, especially if cerebral calcifications are identified.
FULL ARTICLE AT LINK above
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Note that he would be giving amounts for adults. This article is mostly just for your consideration. Any decisions should be with your doctor and family. Most of the suggestions here about vitamins and minerals are echoed in many other articles on this subject.
However the author makes one suggestion about Kava Kava. I'd hold off on that as a few people have had liver problems with it. This article was written about ten years ago, although no date appears. It was before some reports of adverse effects.
And - with all this research, you have tons of material for speech class forever.
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[ 12. January 2008, 02:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Great web page you have at myspace.
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I wanted to mention one thing.
I don't know if you - or a friend - posted this from you page:
quote: "DO NOT EAT any kind of meats , Red meat , Chicken , eggs , Fish , CAUSE SOME LYME DISEASES FEED OFF OF PROTIENS AND ALOT OF DOCTORS DO NOT KNOW THIS !!!!!!" end quote.
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It's not that easy. I wonder in which article that information was found. usually when someone makes a strong statement like that, it's great if they can show the source link and the article, just like for a speech class - or say who taught them that.
Actually, protein is required if you are going to get well. You may need between 60-75 grams of protein a day . . . people who are ill sometimes require more so that their liver can make enough glutathione to detox. Your heart, your brain, every cell in your body needs all the essential nutrients, and protein is part of that.
You can pass out without enough protein, or the right kind of essential fatty acids . . . or enough carbohydrates of the right type. Water, too, is vital.
Protein is excellent for your brain. And some animal protein, if from good sources, can be excellent not just for protein, but for L-carnitine and amino acids and B12 and particular acids such as CLA (conjugated linoleic acid).
I was vegetarian for 18 years and my insistence to continue that as long as I did - unaware of protein and fatty acid requirements - well, I think it kept me exhausted and brain fogged more than the lyme alone might have done.
With a good nutritionist, you may be able to design a good program that would be plant based, but it would need careful attention to be sure all the necessary nutrients are there for someone going through what you are - for someone growing.
Taurine, for one, comes mostly from meat. It is essential to brain health and eyes. Withuout, seizures can happen. Our bodies make some, but not enough all the time.
This topic could be quite expansive. Again, this is just my opinion and from articles I have studied. Of course, people with kidney disfunction are limited to a certain amount.
I'm not saying eat a ton of meat or fish, but the right amount can be nearly like a miracle. I was shocked when my doctor told me I needed 75 grams a day. then I looked up charts for how much was in what I was eating. I was way low.
One egg has just 6 grams.
Please take this is the spirit in which it's intended, as most posts here, we don't want others to have to go through what we have.
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[ 12. January 2008, 02:30 PM: Message edited by: Keebler ]
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