posted
Anyone have seizure like episodes, were your body jerks like a grand mal, but most of the time my mind is aware?
Yesterday the noise and vibrations from a knee MIR affected me. During the MIR I was feeling some sensations in my body, a little quivering of my arms.
After the MIR when they came to get me off the table I could not move or talk, I then had a couple of seizures. Over the course of the next 2 1/2 hours, I had more seizures (atypical according to the ER doc). The weird thing is my brain was working, I was aware, I felt the pain from their procedures. BUT I COULD NOT move my body or talk the whole time. My body was limp. I did open my eyes once in a while. Would of loved to have slapped a few nurses, but could not move or talk!
They gave me IV ativan, I didn't improve. Then gave me a larger dose. Then slowly I started to move and talk.
With the lyme and coinfections I have had light, sound and vibration sensitivities. But have been much better, until yesterday.
I have had this in the past, but it has never lasted this long!
Today my memories are a little fuzzy of that time, but I can remember most of it and I am tired, weak and brain fog big time.
Anyone else have seizures and still be aware? Anyone have seizure like episodes, where your body jerks like a grand mal, but most of the time your mind is aware and body will not move? Cheryl
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posted
I know the episode I had on Sunday lasted longer than the ones I'd been having at home. And the first one lasted long enough for me to end up half-hanging in a storm drain...I know that much. And I was very confused afterwards...didn't recognize my neighbor's ex-husband...thought the police were going to arrest me for running my car into a ditch...
The cop and the paramedics who witnessed what happened said that they were seizures; the ER doc did, too, though this has yet to be 'officially' confirmed. I get an EEG on Tuesday.
My ER discharge paper reads 'seizures', too...but the neuro I saw this week has my diagnosis as 'dizziness'?...so I'm not sure.
I know my eyes were open...my hands were still on the steering wheel while it was happening...I just clutched the steering wheel the whole time, couldn't move. I vaguely remember my neighbor yelling, "What are you doing? Stop! Stop!"...but I could not say one word and could not guide my car. My peripheral vision disintegrated, and all I could see was a small bubble around myself, the very top portion of the hood of my car...no shaking whatsoever...and I wasn't even concerned about my car, which is not like me.
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posted
I wanted to ask, too...do you mean MRI? What's a MIR???
I suffered a severe reaction during a SPECT scan of my brain...as soon as the technician turned the machine on, I experienced urinary urgency beyond belief! which did not subside until she turned it off...and I had used the restroom seconds before the test began.
My daughter thinks it was from the radioactive dye, but why then did the sensation go away when she turned the machine to 'off'? The dye would've still been in me?
I think the reaction was from the electromagnetic radiation...the radiowaves...
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Hubby has what are considered seizure-like episodes. But his include muscle stiffness or dystonia. He is unable to speak or move -- but later he can usually tell you everything that was said. He does not lose consciousness. His eyes can either be open or closed or frequently only one eye is open (but not always the same eye).
He has had many EEG's -- some normal and others abnormal (slowing in left temporal lobe) but no seizure spikes.
The majority of his EEG's cannot be interpreted due to artifact -- he has Parkinsonian tremors and myoclonus.
He has tried many seizure meds but none really helped.
His one brain SPECT from 3 years ago was abnormal -- showed global hypoperfusion including both temporal lobes -- pattern was consistent with vasculitis from Lyme.
Severity and frequency of these episodes varies greatly depending on treatments.
It depends on how long the episodes last as to whether hubby is confused or not. The really bad ones where he ends up in the ER and hospital last for hours. IV Ativan at very high doses usually resolves his spells -- but it takes multiple doses over a couple of days. His worst episodes are almost always when he first wakes up or just doesn't wake up -- starts shaking and his muscles lock up.
Hubby always has dry heaves at some point during these spells.
Make sure you LLMD knows about this episode. And be conservative regarding med changes -- only change one thing at a time and it is best to start at 1/4 or 1/2 "normal" dose.
Personally I think hubby's seizure-like spells are more related to bart and babs rather than lyme.
Good luck and try to be obsevant of any potential seizure triggers. Hubby used to have bad hyperaccusis and noises such as a telephone could cause a spell.
Bea Seibert
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posted
Yes MRI forgive me. I am not too with it today. It took me forever to write the begining post.
With me I know what is going on. But even the pain of the insertion of the hand IV and they are VERY painful to me. I couldn't come out of it, even though I felt the pain.
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springshowers
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Has anyone else had this happen or has figured anything out at all as to what they are?
My family has someone who has cancer and there has been an abrupt onset of these sorts of episodes where the person is aware and remembers but during the episode can barely speak or mumble and is also jerking around arms and legs (more like flaring around and such along with jerking) and they have big huge strong Yawns where the Yawn gets stuck and they yell in pain. There is also increased overall pain where pain already was. There is sensitivity to light and sound. Also to touch. They do not want to be touched and will push you away. They get cold and hot every second with grabbing at covers and then pushing them off. Muscles get cramped and painful. Skin it itchy and they seem to keep rubbing there own legs and arms over and over. They look at us as if they are trapped inside of themselves and they are "afraid". When there are any words its something like that "i am afraid" or "i am dying" They say later they feel tingling in the hands and feet. Also they first feel tightness in chest or pain in chest like brick on it. It is an abrupt onset always in the evening in about an hour or two after they lay down to sleep and are going to sleep.
The ER has seen this a couple times now and they are perplexed. It does not seem to be a seizure based on the memory and length of time. They once called it Sundowning syndrome but there is too much agitation and activity that is physical and Sundowning is more dimentia type of a think or anxiety / panic attack. But it does look to have symptoms of panic attack in it too. Other doctors say it may be from pain medications that were started a couple months back that are Extended release narcotics and they do not do well with them? Not sure. Some doctors say that the cancer they have is affecting the nuerological system as it advances? Others say a combination of all of the above. One is referring to a neurologist. Confusing us all.
No matter what they are suffering and the after math and days after show much more degrading of over all health. Weaker each time. More balance problems. Is now using a walker and such. Looks more pale and more ill. Can not think as clear. Each one brings another big hit to their condition and more so the actual after math symptoms now continue to show and get worse and worse each time ongoing.
IF it were not for these episodes I am sensing the condition would not be near as bad. The actual cancer condition was bad and all through the body but not until this onset has the overall health gotten so bad that hospice is in place and family is holding on tight and not thinking the body can handle another episode. Each one is of varied times between one another. Sometimes two nights in a row and sometimes 3 days between and sometimes 5 days inbetween. SO far no more than the 5 days. The body can only handle so much of this and is getting weaker and weaker. Oxygen is now given 100 percent of the time. On the times there are 5 days inbetween you can see strength building and color coming back some. Even though not ever back to prior but there has been some showing of some recovery on the times where there are the more days between. Otherwise though overall still an overall decrease for sure and in a huge way. Just two months ago this person was someone with advanced cancer but walking and breathing and fulling taking care of themselves. Now they can not be alone or left alone and need aid in all areas of daily life and self care.
These episodes still not diagnosed and we have tried Ativan in many dosages and even the ER has done it along with Haldol and various things. Even though I think it has "helped" it is not obvious, meaning they seem to take their course no matter what we give or how much or when. Its amazing after many mg of ativan that the person is still going through such violent episodal symptoms and suffering. WE are working with hospice doctors to find and try other meds and amounts to help stop or shorten them. Nothing so far has done much at all to help. Almost the more we give to help the harder it is for them to recover and the after affects and symptoms more severe such as balance and thinking and talking and walking take much longer and stay longer then shorter. Also shakiness and trembling of hands and legs to a severe point. So the after symptoms and recovery end up longer and more severe when we add medications. The thought of this being from narcotics and too much medication for this person is a possible thing but hard to understand because the narcotic amount is not that high. But this person is very senstive overall to many meds and chemicals and additives and things overall. Very senstive. ? So it could be. But still lots of guessing.
ANY Help from anyone would be so appreciate.
CLues or others experiences or such.
I would be so thankful to help with some puzzle pieces to help my family member. I Found it interesting to find this post at all and I have not been here in quite a long time as I was by the bedside of this person for weeks and weeks on end.
These episodes are so horrific and detremental to the overall condition and I even believe life span now of this person that I am so very much trying to research and find more help and ideas and get more doctors also on board to evaluate.
As we know many doctors just do not know or even throw out guesses. I find that when they find out there is advanced cancer it is like they give a look "why do you care" or "what does it matter anyway" look. Its horrible. I repeat over and over that it is needless suffering at this point and it is suffering that nobody should have to endure over and over and over.... onward.. without help or active interest to find out how to STOP the suffering of this person. No matter what stage of life they are at it is of importance to find out what is going on to help stop them so that the suffering does not continue over and over and over and repeating itself every few days for hours and hours. Others around this person too panic and it is so scary to see and watch and calling the EMT or going to the ER gives no answers and they are starting to not give advice to go to the ER once the EMT comes out and now that there is Hospice a nurse comes out but is perplexed as to what to do. WE are to try Haldol next in a higher dose than before which was just one dose added to high doses of ativan. Then we are to try an actual anti seizure med. Its like trial and error at this point. It is better than nothing I guess but I still would like to know what is going on.
SOrry for the LONG post.
But any help or ideas for my beloved family member is appreciated and as well the poster who started this will benefit as well
Blessings
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quote:Originally posted by seibertneurolyme: He has had many EEG's -- some normal and others abnormal (slowing in left temporal lobe) but no seizure spikes.
Are you saying that my EEG this coming Tuesday might not indicate seizures, even though one caused me to drive into a ditch on Sunday and the cop and paramedics all witnessed it?
Here we go again...the woman with the 'normal' tests who drives her car off the road for 'no reason'...:-(
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By the way, how is vasculitis diagnosed?...a SPECT scan? Mine was abnormal a few years ago.
I also have that 'roadmap' of blue veins or blood vessels covering my left shoulder and the left side of my chest. I've shown this to sooo many doctors, but they just blow it off...
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Don't really have any answers for you -- hubby's neuros have been stumped. One neuro did tell hubby that there was no one part of the brain that could cause his episodes -- meaning that he didn't think it was a tumor I guess.
PCP wanted to add haldol to hubby's ativan this time he was in the hospital but we declined that suggestion.
Back in 2007 when hubby was having similar episodes the ativan quit working. We used IV demerol instead which was somewhat effective at that time.
In hubby's case I honestly think that his is related to bloodflow to the brain. His pulse ox is normal but according to the previous SPECT scan he has global hypoperfusion.
In your relatives case there are many possibilities. Liver toxicity may be a factor if the person had chemo.
If you notice a spell coming on there are a couple of things that will sometimes work if you catch it quick enough. Hold a rub alcohol pad under the person's nose. Or better yet -- the old fashioned smelling salts -- ammonia capsules from a drug store. They actually did this in the ER to bring hubby around a couple of days ago. I used to carry those around with my medical supplies.
If you can afford it, then IV glutathione used to bring hubby around when the IV Ativan wouldn't work. I usually used between 1000 and 2000 mg. That was several years ago when hubby was actually passing out and the spells were more like normal seizures -- but it might still be a possibility. His LLMD did that and a Meyers cocktail a couple of years ago when he had a milder spell in the docs office.
The yawning and the tremors make me suspect that lack of oxygen or hypoperfusion is contributing to these spells you describe. The sensitivity to light, sound and touch all indicate that the nervous system is somehow involved.
If you just need something to calm the person then there is one med that could be tried. Hubby used to get this in the ER to stop his tremors and dry heaves -- this was 10 years ago before we had any diagnosis and when he first got sick. I think the med is no longer used in the ER because there is a slight risk of cardiac issues.
The med is given IV and is called droperidol -- I think it actually has a very small amount of haldol in it. A small dose was helpful, but one doc tried a larger dose and that made things worse instead of better.
Hubby probably had this med 6 or 8 times in several different ER's. When the med was taking effect he would have a brief exacerbation of symptoms and then he would just be relaxed -- it didn't actually make him sleepy, but then ativan doesn't make him sleepy either.
One other possibility of a class of meds to try would be migraine meds. I went to the health food store yesterday and got hubby a bottle of butterbur capsules (Now brand has butterbur and feverfew in it) which are used for migraines. These used to be somewhat helpful for headaches. I was also looking for prickly ash bark tincture but the store did not have it.
I hope some of these suggestions might help, but I really don't know if they will or not.
elizza,
Many Lyme patients have seizure-like spells but "normal" EEG's. LymeLady is another one who comes to mind. Her episodes are probably even more severe than those hubby's has.
Hubby has had ER docs who thought he was having classic tonic clonic seizures just from looking at him. But EEG's did not show that.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
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posted
= elizza,
your Q: " . . . EEG this coming Tuesday might not indicate seizures?"
Exactly.
An EEG would not have shown past seizure activity for any time before being hooked up and the machine being activated.
� An EEG will only show seizure activity IF happening at the same time of the test.
� And an EEG does not show everything, some seizure activity cannot be measured if coming from a place where the electrodes are not placed to measure, such as for places deep in the brainstem, etc.
After the neurologist talks to you, then the exact placement of the electrodes for an EEG will be determined.
� Also know that EEGs will not pick up seizures from many causes such as toxicity from chemicals or infection, or inner ear dysfunction that triggers seizures. This is why a LL neurologist would be so important. A LL specialist would understand the NMDA neurotoxicity issues.
� Adrenal exhaustion seizures also may not show on an EEG. Lyme patients who have seizures often have adrenal dysfunction involved.
� Seizures from elevated porphyrins also may likely not show on an EEG. More about how porphyria can affect lyme patients, see the "Secondary Porphyria" post first: ------------
. . . Avoid smoking. It makes the blood vessels constrict (become narrower inside) and can therefore make vasculitis symptoms worse. . . . -
[ 12-26-2010, 10:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- cawpo,
First, as Carol in PA says, low MAGNESIUM is the very first thing to consider.
Second, your LLMD should be very familiar with what you describe but, in my experience, no other doctor will be, even neurologists or E.R. doctors.
I've had many seizures as you describe. I've even been told to leave the E.R. during some of these as they were "atypical" and the doctors though I was trying to throw myself off the table.
There have been many similar experiences where doctors or nurses thought I was making all this up because my body "over reacted" to even soft sounds - but most often to the overhead PA announcements that were like rocket fuel to my ears and brain.
I, too, have light, sound and vibration sensitivities. I have some inner ear bone abnormalities that contribute to this, in addition to lyme.
The seizures you describe are actually fairly common to those who have lyme and seizures, according to on LLMD whom I consulted and had a seizure in his office when someone just closed the door in the next room - not slammed, just closed it.
MRIs always trigger seizures for me so I will never have another one again, ever. The sound is just deafening. I hope they at least gave you ear plugs but they are only of minimal effectiveness as the vibration travels through bone - and through nasal passages - not just our ear canals.
I've collected links over the years and there's a lot of stuff in the thread below that may be of help to you.
==============================
While not a collected thread, see my recent posts here regarding seizures and what can help. I hope you can copy, paste save to your computer file - and print those out for easier reading.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
==========================
I know this must be an incredibly frightening and frustrating time for you. Really, first MAGNESIUM. FISH OIL. And be sure your LLMD is made aware of this ASAP.
For now, I suggest avoid all stores. Just far too many triggers and once the brain has experienced that degree of seizure, the "kindling" effect can make even smaller triggers dangerous.
There is hope in all the links, though, really. Nutrition matters greatly.
Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Cawpo,
Instead, I wish they had given you IV Magnesium with some IV vitamins and Taurine.
There is evidence that ativan has induced porphyria and that can lead to seizures. THAT could by why it did not work for you.
I deal with two kinds of porphyria and I've not yet found a seizure drug that works for me.
Neurontin is usually safe for those with porphyria considerations, however, that also fails for me. Still, it has helped others. If you start on any anti-seizure drug, if your kidneys are fine, Neurontin may be the easiest one.
However, be sure to avoid Ibuprofen as that can be very hard on kidney function. Acetaminophen is hard on the liver so it's best to avoid that. Other options are in the EAR thread.
MAGNESIUM and some other supplements have been far better help in my case. Ultimately, treating infection and supporting the liver, kidneys and adrenals provides the winning combination.
Of course, there can be other things as lyme and even toxicity may only be part of the picture. Still, your LLMD is your best guide regarding who else to consult. They should be Lyme Literate, though.
posted
Thank you all for responding. I have had lyme for about 17 years in treatment with a top LLMD for 7 years. I have not taken any antibiotics since March. I do Rife once in a while. So I do know all the strange symptoms and have had MANY of them over the many years.
I have had a few MRIs in the past without the seizure activity.
Bea thank you for responding. I was hoping to hear someone else had experienced the seizures and being aware. Like I mentioned I have had it in the past, but never lasted this long. Other than the seizing, it was like the people having surgery describe when the anesthesia is not right and they fell the pain and are awake but can not move or talk.
I do see Dr.B a LLMD psychiatrist. He says they are deep brain seizures. I am aware about the mag and did ask for it in the ER. The blood test showed it was low so the doc did give me some. I usually do take it but have been out of it.
I have had EEGs and all been negative. I was hospitalized once for the seizures. The Neuro made me see a psychiatrist before my discharge. He said I was seeking attention!!! Now that is in my records!
Of course during the 4 years it took me to get diagnosed I was told the standard it is all in mine head, panic attacks, depression, etc. Well actually it was, just not like the docs thought! Happy Holidays, Cheryl
Posts: 109 | From PA | Registered: Jun 2004
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quote:Originally posted by cawpo: Of course during the 4 years it took me to get diagnosed I was told the standard it is all in mine head, panic attacks, depression, etc. Well actually it was, just not like the docs thought! Happy Holidays, Cheryl
I got the same thing. I'm almost tempted to send all the docs who ridiculed me with 'it's all in your head (chuckle)" a copy of my accident report and ER discharge papers showing I seizured, so that they can see I landed my car in a ditch having a seizure.
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Keebler
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- Elizza,
You might want to hold off on doing that just yet. I hate to tell you this but, many neurologists will determine that seizures might be psychosomatic IF EEGs show nothing. Some say seizures are also emotional based "pseudo-seizures" - so be very careful and just lie low until this is figured out.
It's best to see how the diagnostic process goes. EEGs often show nothing. Now, that is a problem with the recording system as they just simply can't capture all that is going on in the brain.
But, the sad part is that most doctors are still too quick to say it just is not so unless they have black and white proof. So, tread lightly until you've go some more information.
Far too often, patients are shoved into psychological categories because the testing methods fall short &/or they fail to fully assess patients' clinical presentations and personal accounts - and they do not allow of many personal details into the big picture if there is no proof on tests.
We know just a tiny percentage about the human brain. While there are some good diagnostic tools, there is NO machine - NO groups of machines - NO blood tests - that can really see or show all that is happing there. Sadly, though, many neurologists don't know that.
Be careful to stay grounded through this diagnostic process. -
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Keebler
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- cawpo,
It's mentioned at that other seizure thread but be sure to remember the impact of HEAVY METALS. -
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posted
Keebler, I can't tell you how helpful your words here have been for me.
I had my own neurologist appointment several weeks ago and have wanted to get feedback about it, but have honestly just felt so emotionally exhausted with what happened that I couldn't bring myself to write out what happened. Hearing you (and others here) say that neurologists will make the "it's all in your head" even for something as strong as seizures, when it just doesn't fit into their box, is really helpful to me.
The beginning of this month we went in to see a neurologist. The goal was mainly to make sure they didn't think anything dangerous was happening.
* When I arrived I was having some of my usual tremors, which we thought we'd also ask about. The neuro said they weren't "tremors", because they weren't rhythmic -- tremors have to be rhythmic. She would classify them as "titubations", and that they were purely due to stress.
I know that stress is a factor, but I also know that my tremors become stronger and seizures come either when I'm herxing from something or my lyme symptoms have become more pronounced.
* So, we asked her about my seizures then, and she quickly stopped us to say that we aren't calling them seizures -- because that's not what they are. She'll call them "convulsions". And, these convulsions are actually the same thing as my tremors, but just a stronger form of them.
* She said some people would call these "pseudo-seizures", but she doesn't like to use that term, as they really aren't seizures at all.
Um...
* She then asked if I was depressed. I tried to avoid the question, because yes, I am depressed, but I didn't feel that was ultimately a topic under discussion. She said that she felt I was depressed and wanted me to seriously look into depression meds or St. John's Wort, as these would help stop my titubations and convulsions.
It was confusing, because she was so NICE about it all. She wasn't mean or condescending in tone -- just very nicely told me this was all in my head. Really hard to take.
The other thing I found strange is how separatist these doctors are. I arrived in a wheelchair, and could hardly walk the few steps across the room to show her my gait. But, we didn't talk about that at all, and she wasn't interested in the rest of my health.
I wasn't necessarily interested in getting into it with her, it just is so odd.
So it is helpful to know that I'm not the only one who has had this kind of response.
** One thing I wanted to ask: I can't remember very clearly, but I think she said that these couldn't be seizures if I wasn't losing consciousness. Can I just confirm that this is not true?
And Cawpo: To get back to your original question (sorry to go off topic there)...yes, I am fully conscious during my seizures -- I just lose control of my arms/legs/torso. Sometimes I can even still use my legs alittle bit (although I'm very weak, and need help) -- but the rest of my body is either stiff or convulsing.
You definitely aren't alone! Thanks for posting about this. I value knowing there are others out there.
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Keebler
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- LymeAware :
" . . . couldn't be seizures if [you weren't] losing consciousness." ?
Oh, yes, I've heard that, many times. The loss of consciousness for me is usually immediately after a startle trigger and I know my rocket's been fired for blast off. But, then during the seizure I am somewhat aware of sounds around me.
I am unable to control my body at all as it tightens to cut off my air supply.
I have no idea where I am in space, though, sort of as if I'm floating above my body but I am also aware of gasping, unable to breathe while making sounds like a stuck pig or contorted with such an arch to my neck I'm thinking it must have snapped off.
After the muscles loosen, then, I may be able to mutter a word or two but cannot move my body for a bit. I made the mistake of saying it was as if I was temporarily paralyzed and then a doctor yelled at me, dragging me to see a woman waiting in the lobby in a wheelchair.
I've been told these are not seizures.
I basically blew out an EEG machine and they couldn't believe it so called it "artifact" saying the machine must have been broken. Other EEGs failed to capture but 3 different QEEGs - all by different professionals - all captured problems with the right parital (sp?) region when I was trying to read or do math and there was a startle.
During several of the EEGs, some of the technicians told me they were not supposed to ever tell a patient anything but since I seemed so sincere several techs said nearly the exact things:
" . . . this EEG won't show on the radar for the doctor but you have REALLY slow brain waves. The doctors really don't pay attention to that but you might want to know that it's not all in your head as they will likely tell you . . . ."
And - their having said that made so much sense after I studied up on all this. They also made it clear that with such slow brain waves, the breakthrough seizures that I would experience, or the drop attacks, just might not be happening during the EEG.
Yet, the MDs made it sound like the EEG was the ultimate and last work. Not so. Not at all.
All of what you describe - an my experiences - are very common with lyme. But, I've been to many neurologists over the years and they all say "no problem" and "nothing is wrong with you except your demand for attention"
and I'm about the most grounded, low-key person I know, in spite of all this. I don't loose my temper but I was strong in asking for them to explain and help me. I was strong in saying - well, when my speech was not so "stuck" and slurring (which I was also told was "just fine") - I was empathic in saying how distressing this all was.
I was told to "get a life" and "take long walks" everyday to loose weight.
However, my neurotologist DID confirm that for those like me with inner ear dysfunction and central nervous dysfunction that affects balance that all that can trigger a kind of seizure - but he still said it was not "normal" ones.
And, yet, in public, I've had nurses who happened to be around ask "How long have the grand mal seizures been going on?" -
I could go on and on but it's very upsetting, actually, and take a lot of time. I do not like to "go there" as I must look ahead to each day.
Now, I live in a state where is it truly a crime to have lyme and all that is in my chart so that's likely one reason for the MD dismissals.
I also have elevated mercury and cadmium but no MD ever helps with that. Not in my state.
Adrenal problems, too. Again, ignored by MDs. BTW, adrenal dysfunction CAN trigger seizures. Usually, these are startle reaction triggered but often, just from sheer exhaustion and then trying to trudge through.
I cannot stress enough the importance of steering clear of any specialist who is not lyme literate.
Sure, it's common sense to know that lyme may not be causing all symptoms and there could well be other things going on. However, if a specialist is not LL, well, then they have no frame of reference.
It's very abusive, the treatment that I now recall and I know those scars do run deep. I just normally choose to turn away and then do what I can to make my day better and try to have a chance at life.
But the medical abuse is a factor and I do try to use good psychological sense about that, reframing, etc. so that it does not clobber me. AND I avoid idiot doctors. I try to learn all I can so as to never have to go to an E.R. again. Ever.
The process of diagnosing seizures is in the dark ages. And most MDs think their tools are the cat's meow. Not at all.
A QEEG is far better, yet we simply can't know or see it all. And most MDs will not do a QEEG, although some will do something similar, called a "functional EEG"
Still, so much is clinical assessment and observation. Both areas for which neurologist seem to have been brainwashed against.
Also, remember, they've not seen what lyme can do. They don't believe in lyme and they are sure not going to start learning more now.
The seizures that don't fit in the neurologist's definition Do happen, though. oh, well that is most often seen with:
Magnesium deficiency (or Taurine, certain B's etc.)
Toxicity from infections; heavy metals; molds, etc.
Liver stress; kidney stress
Lack of sleep and/or adrenal dysfunction
Inner/Middle ear abnormalities that trigger brain spasms
Toxicity from our environment or bad food choices or habits such as smoking, excessive alcohol, etc.
Going back to the link above, there are several articles that go much more deeply into the many things that can cause a seizure - and what can help.
===========
Another problem I has is that every one of the anti-seizure drugs made seizures WORSE for me. I was told, therefore, that they could not be "real" seizures then or the meds would have worked.
That is not true, however. MANY who have documented epilepsy have "irretractable seizures" were no Rx helps (and can make things even worse).
Yet, the neurologists failed to diagnose two kinds of genetic porphyria (because that's not their area even if this liver disorder causes severe neuro problems) - all the drugs given but one triggered porphyria and that can cause seizures.
They also missed celiac. It took years before the genetic test diagnosed that. Undiagnosed celiac can also trigger seizures.
So, it's not just with lyme. As you said, neurologists are just able to see exactly the tiny piece of the puzzle that is in front of them and are most often too lazy to consider the bigger picture. Normally, I feel badly about using such sweeping generalizations and I know there must be a neurologist out there - somewhere - who is brilliant, competent and forward thinking.
But, I have to say that I've never met one. Yes, some can be very nice, indeed. But every one to whom I've asked help has fallen way short. Very sad, indeed.
But, I don't need them anymore. I know I have a lot of work to do and it all lands on my shoulders. I just rarely look back - but this wave of recent seizure questions here has me doing that. Not a comfortable place at all.
For me - maybe for others - look ahead. Look at what YOU can do to make things better and don't miss one single clue. Cover all the bases. It is on your shoulders regarding excellent self-care and nutrition and - hopefully - you will have superb LLMDs to guide with that that part of it all.
Clearly medical abuse, whether loud and dismissive or through ignorance can have devastating effects on many levels.
It's very hard to clear those horrible experiences out of my history. So, for others, if there is any way to AVOID medical abuse in the first place that is best. It's really hard to erase the audio tapes of some of the things doctors have told me when I've been at my sickest.
Sure, we can say that should not be so, but it is. We must recognize that and try to avoid it.
Self-education, understanding, finding LL doctors AND taking the absolute best care we can of ourselves is imperative. -
[ 01-01-2011, 03:40 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
- LymeAware,
We live in the same state. That explains a lot. There is NO neurologist in Oregon who can understand the kind of seizures that we deal with because this is a state where all the MDs have been taught to discount any patients who just don't fit their old textbook cases.
If you have "lyme" anywhere in your medical file, you will likely never receive good medical care in this state, even if it is for something else but where lyme might need to be taken into consideration.
While there are no LLMDs allowed in Oregon, and it is truly the most hostile environment for those patients with lyme, you can find some resources through this wonderful group of people - and some LL NDs who are ILADS-educated.
There are a few NDs who think they know all about lyme but do not. Be sure you go though OLND for those who are ILADS-educated and keep up with the research and communicate with other LLMDs and LL NDs.
Through OLDN, you might also find one or two MDs who, while not knowing much about or treating lyme, will not throw you out the door for other things.
BTW, I attended a lecture by a LLMD years ago and, during that, someone opened a door unexpectedly and my body flew like a cannon, complete with the grunting like a stuck pig and all. The LLMD said later that he's seen that kind of seizure in many of his lyme patients.
At times, it got better for me on certain protocols. (Allicin or Andrographis - separately, have been the best for me, but neither is enough alone. It's very complex.)
This truly is a condition where I wish I had all the money I ever wasted early on as now when I know what works best, resources are much more limited. That's why I stress so much not messing around with any doctor who is not ILADS-educated and up to speed.
posted
You mean I landed my car in a ditch having seizures, had them in front of multiple witnesses, including my neighbor and paramedics, and my EEG might still appear 'normal'?
Great.
The neurologist told me to mention this tightness I feel in my lower jaw and at the base of my brain to EEG technicians. I usually feel this to some degree 24/7, but last week it was worse...today it isn't as extreme.
I noticed this morning that my left eyelid is drooping a little, too...this is what it was doing when I was first diagnosed with Lyme.
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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Whether or not these episodes are technically seizures or not is not the only factor that should be considered regarding whether or not to go to the ER or urgent care.
When hubby's muscles remain locked up for hours his blood pressure escalates. This past week when I took him to the ER one of the readings was 180/83. Blood pressure readings that high could cause a stroke.
Sometimes the ER or hospital is a necessary evil. Even if the docs do not believe in Lyme and coinfections sometimes it is better to err on the side of caution and make the trip. I always wait an hour or two and try multiple things to bring hubby around before going to the ER.
Just like everyone else here the longer your loved one is sick the more you will learn about what is "normal" and what is not regarding symptoms. After many years we found a PCP that is also an ER doc and has hospital admitting priviledges. So if I take hubby to that ER they are much more understanding.
This last hospitalization hubby had several of the same nurses he had last July so they at least knew what to do for hubby even if they don't really understand what is physically wrong.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thank you Keebler and Bea for your responses. It truly means a lot to hear your experiences and, while I wouldn't wish this struggle on you, it is comforting to know that I'm not alone in it.
Keebler, I appreciate you sharing in this way, and particularly when I realize it takes something for you to do so. I hope you will only share what you feel right in doing so for your energy. It certainly does help to know you here though, and learn from your experience. Thank you for this.
You and I have been in contact before about negotiating all this in Oregon, and I value your unique perspective here. It helps to know that Oregon is so very difficult for all this!
I thought of you a few days ago when my family came to visit (my first social interaction in many months). They all arrived (all 5 of them) wearing Christmas light necklaces, which were set to blink rapidly. This triggered a lot of strong tremors, and then later I had seizures in front of them.
I hadn't thought about it at first, but knowing your experience with such things helped me recognize how clearly the flashing lights had been an impact in this happening. So, it really does help. Thanks.
While my husband and I were somewhat freaked out at first with the constant seizures, the seizures aren't nearly as frequent or long now...and when they do come I feel alittle more understanding and balance in them. It doesn't "freak me out" so much anymore...it's just something to experience and to take seriously, but also be gentle with. Keebler, your words echo this.
And Bea, I appreciate your sharing as well. Sometimes it's hard to know when something is "serious enough" to make the step to the ER. I hope to prevent that from happening, but good to keep in mind what you said.
Healing and loving space to all of you...
Posts: 232 | From Oregon | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LymeAware,
I thought that was "you"
Flashing necklaces ? Oy, Vey! It is imperative that some ground rules be set for those who wish the pleasure of your company.
� No one can go blinking, flashing, buzzing or ringing around you.
Cell phones must be turned off.
Any flash photos must be announced in advance with certainly that you get the signal and confirm that before they push a button.
I can't even be around anyone who wears checks or stripes. They have to cover up or I tip over. Seriously.
And, of course, scents are not workable, either. That's the hardest one to work with, actually. I hope that's not too bad for you but for many with even inner ear issues, scents also can trigger reactions of all kinds.
You can blame this all on inner ear stuff - and it's also very common with plain old seizure disorders (not even counting in the lyme). You need not even get into the lyme stuff with others when you say that you need to have a relatively calm environment.
As for seizures not being so bad or your reaction more manageable, I can tell you that it is never a good idea to just ride out environments or activities that are too stimulating.
It took me a long time but I have determined that, to my brain, ANY seizure is bad. ANY seizure adversely affects kindling and that can lower the threshold for a next time. Any time you can control your surroundings to lessen the chances of a seizure, that is very wise.
Even if stimuli does not exactly put you into that icky feeling of a seizure zone - if stimuli is stressful, that is very harmful on many levels and changes must occur if at all possible.
If treatment for lyme/TBD - heavy metals - adrenal function - are not enough, consider parasite involvement.
Also - if the complementary methods do not control seizures to some point - you might consider Neurontin. No anti-seizure Rx has ever worked for me, but it might for you. Some can tolerate low doses of Klonipin. Sometimes, we just need a little more help while all the underlying reasons are being addressed as they can take time.
You might also look back over those articles I first sent. From time to time, that helps me to be sure all the bases are covered.
Good luck. I do hope the coming year brings some goodness around for all the world. -
[ 12-28-2010, 04:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I know this message hasn't been replied to in a long time but I noticed some similarities between seizures mentioned above and the seizures I used to have as a kid.
They started at the same time as a lot of other symptoms around the time the "suspected bite" was thought to have occurred. I was 9 yrs old and started having seizures when I laid on one side of my head (only that side) while I was about to fall asleep. I remember the first one, I started trembling and dry heaving, but managed to stop it by quickly getting out of bed before I lost complete control of my muscles (maybe this was just the aura to a seizure?) I had no clue what had happened so I went downstairs and tried to explain it to my mom who understood nothing but saw that I was slurring my words and drooling a bit. So I just went back to bed. After that, I remember having several seizures during the night, still having no clue what was going on (very scary for a little kid). Most of the time I'd lose control of my body and do the choking/dry heaving thing but still be able to hear and see. Sometimes I'd slip in and out of conciousness but I remember being aware, or at least aware of one or two senses, very often during these. Sometimes I could stop it by rolling out of bed and letting myself bang against the side of the bed until I got full control over my muscles again.
It wasn't until I was 12 that my parents caught me having a seizure for about 15 minutes. They called the ambulance and I spent the night in the hospital but by then I was perfectly alert and fine so they sent me home saying I had ha a grand mal seizure. My parents took me to a neurologist and I had many EEGs and MRIs done but all came back normal so he diagnosed me with benign childhood epilepsy. The seizures continued until I was about 15 and I haven't had any since so I just assumed it was a childhood condition I had grown out of.
Sorry for the long history, but could these seizures possibly have been caused by Lyme or Bart? I also developed a blinking tic at the time they started.
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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Thanks for posting about this. I value knowing there are others out there.
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