dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
A new neurologist I saw thought we should do an EEG to investigate possibility of seizures due to my multiple head symptoms, as well as a lesion on my brain MRI that has not changed in several years.
Most of my doctors (even LLMD's) believe this lesion is a venous malformation that I was born with. But I have been having MRI's over the past 5 years just to see if it is changing.
The neurologist is not Lyme literate, but he is Lyme friendly, acknowledging the damage that chronic Lyme and tick borne illnesses can cause. In fact, he has many patients with tick borne illness.
It turns out that results of my EEG were abnormal. He says he wants me to keep a diary of my symptoms and after MRI of brain, we are going to meet and discuss everything.
I don't understand the terminology in the EEG report, but there were definitely some surprises. I am not aware of ever having had any seizures, but I have occasional twitches and tremors that are very brief.
However, I live with constant paresthesias in my skull and ears. These include odd sensations of sizzling, vibrating, tingling, burning, buzzing and ringing in my ears, head pressure, and more. I have also had many occular migraines.
I suddenly lost almost all hearing in one ear 5 years ago. This was followed by damage to my vestibular system on the same side (balance) but somehow my brain has done a good job of compensating. By this, I mean that my vision has taken over the job of my ears, in helping me to maintain my balance.
I wonder what to make of this and am scared. I have a feeling the neurologist is going to want me to take anti-seizure medication. But most of those meds are 'ototoxic', meaning they can worsen tinnitus, balance, and hearing loss. There are also other side effects that scare me.
Anyone here have experience with abnormal EEG or knowledge of reading EEG reports to help me decipher what was discovered before my MD visit in 3 weeks? I want to go there prepared to ask the right questions. Thanks so much.
Posts: 2386 | From New England | Registered: Aug 2011
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WPinVA
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posted
My son (who doesn't have Lyme or at least not that we know of) has epilepsy and he is doing very well on Keppra. It is scary to go an an anti-seizure med but it's been great for him. Yes, there can be side effects but there are also problems with untreated seizures. He hasn't had any issues with his ears, I was told those s/e are very rare.
Important to find a neuro who specializes in epilepsy. Not all neuros are the same with dealing with seizure disorders. It sounds like your neuro is doing all the right things, so perhaps you're already set! Sx you describe can be indicative of sz and it was great that he recognized that. Not all sz look like we would expect.
The MRI is a good thing to do. How long was your EEG? The other thing that may be in your future is a longer EEG, if you haven't already had one.
What did the report say?
Posts: 1737 | From Virginia | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- dpbei:
Not all seizures are caused by epilepsy. Most are not, actually.
It can be that something in the brain can be an irritant or otherwise short circuit the neuro impulses. So, some kind of brain scan . . . and if there are lesions (note the location in regard to seizures) . . . know, though, that lesions can often shrink or disappear when lyme / TBD treated.
Lesions can be "merely" inflammation - though nothing is really "mere" about it, it may seems. But they are often soft swellings of the sort.
You would need to know if there is something else that might be a structural influence, of course.
What you describe maybe ABSENCE seizures (could have various causes) and it is important to look into it - re: driving safety, etc.
If you operate any machines, too, may be best to avoid until a fuller workup. Lawn mower, etc.
*** There are many causes, influences and treatments for activity along the seizure spectrum. ***
Could even be a gas stove or furnace as the influence.
It seems entirely reasonable not to start Rx until assess the causes, influences & triggers. Just adjusting something in those categories might help.
And, then, there are also many herbal supplements & a few specific medicinal mushrooms that are excellent in helping to correct the matter.
I've found much along this area after not being able to tolerate Rx anti-seizure meds that are not just ototoxic (as you are so wise to take into consideration) but very hard on the liver.
This thread (see links set to come) is not as organized as I'd like there are some excellent articles and replies.
If at all possible, you might consult a LL ND.
Also know that if lyme & other tick borne infections are still to be treated to remission stage, there is good hope that by such full treatment (and there are various ways, even with rife machine to avoid ototoxic meds) . . .
well, with remission / recovery from TBD, many who have activity in the seizure spectrum see that resolve.
First, start identification / elimination the possible influences &/or triggers such as fluorescent lights, gluten, all food additives, scents, chemicals, etc.
Find out - for you - in YOUR case - what it all about before just dampening your brain with sedatives. Something I've never seen anyone write about as well, is the way that anti-seizure drugs are SEDATIVE in nature.
And, for those with lyme, part of our brain is trying disparately to wake up. So, when we sedate our entire brain / being . . . then that part that is trying so hard to wake up is going to try even harder. And they the push through - a seizure can occur.
That seems to be for myself, anyway. Other than the toxicity & vertigo issues that most anti-seizure drugs are the "big clobber" . . . the very fact they are trying to put to sleep the entire brain and my brain, by God, is just not going to stand for that. It WANTS to wake up and be able to concentrate.
Now, this activity has been written about as "breakthrough" seizure but then MORE sedatives are given, and it just adds to my trouble. When I started looking deeper, I found there are many ways to approach. And, IMO, your approach may likely be very much individualized to you needs.
There are many folks who are lucky enough to be able to tolerate anti-seizure meds and also think when they need to. I was just not one of them. You may be. However, the ototoxic consideration is a mighty one. I do hope there are some things here that will help.
And sorry this is happening to you -- and really sorry this is such a complex matter. All the things I post, well, there are just so very many considerations. And each one matters.
Breathe, and plan in frequent BEAUTY APPRECIATION. -
[ 03-26-2016, 05:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- So glad you posted this as I had lost the Dean article and am so glad to have been able to find it with a search. If you have any trouble, let me know as I copied the full article to my file for safe keeping:
Note the part where Dean says that if you give anyone the "right" amount of toxins, they can have a seizure (and that would not be epilepsy).
So, too, if the liver or kidneys are overwhelmed, seizures can result. All the seizure drugs I tried all caused worse seizures in my case - as my guess is my liver just couldn't manage them. And most caused me worse vertigo, a main trigger for me.
No one has written about this (that I can find) yet I also think that a messed up vestibular system can trigger seizures just by the overwhelming neuro impulses that the messed up vestibular system goes through. I would bet the bank on this as it's been my experience big time.
Go to PubMed and cross search with "seizures" I think I saw a new entry there last week. Berberine REALLY helps tremendously to minimize seizures for me, both strengthening the threshold / settling kiddling . . . and the intensity of any that sneak by.
[I've never been able to obtain good treatment for lyme, TBD, so I just patch together the most important bits. For those who have a LLMD and have access to full treatment (and alternate methods, too), so often this aspect just disappears when they reach remission.]
My eyes are all jumpy now so can't find where, in your post, I thought I had seen something about a malformation. Wonder if it's Chiari. Of course, you likely know all it and it may be something different.
Timothy Hain, MD, an excellent vestibular specialist has written that often, he does not suggest surgery. Sometimes, that can help but, of course, with someone who has lyme, there are major considerations.
UPLEDGER INSTITUTE . . . a specific kind of cranial sacral therapy might be good.
Just avoid anything that suddenly twists your spine or neck. And avoid bouncing on a trampoline.
Hope you find some good avenues. -
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Keebler
Honored Contributor (25K+ posts)
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posted
- You say you will soon get an MRI
The noise there can be damaging so I really wish there were a better way. Might a CT scan tell them what they want to know? They are fairly quiet.
1. If you do an MRI - Make sure you have the special ear muffs that are MRI approved. Do NOT do the MRI unless you have those. The are dB rated (decibel) and have zero metal. Some MRI departments have them - call ahead &/or scout the web. You can also order your own in advance. If you order your own, be certain they are legitimate and not knock-offs.
Do not do an MRI without the muffs -- and be sure in advance for an MRI of the brain, they can be worn. IMO, ear plugs are not enough protection.
2. Be sure to find out exactly, precisely, absolutely how to have the MRI ordered to assess for Chiari. There are very special specifications. Not just any MRI will show this. -
[ 03-26-2016, 04:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Wow, thank you so much for all of this great information! I have a lot of reading to do, Keebler, but I do look forward to going through everything you posted.
WPinVA, thank you for that information on Keppra and how your son is doing better with it. That gives me some comfort. My EEG was only an hour. I know there are some in which they want you to sleep. I did not sleep, but I had to show up for it sleep deprived.
I already had my MRI and I had it done at a place that allows the use of head phones to listen to music. I also wore ear plugs and ear muffs! But I could only hear the music in between the horrid pulsing noise. Glad it is over anyhow. I do not know the results yet.
I don't believe I have epilepsy. I am not even sure I had seizures. It may some abnormalities which predispose me to seizures. I will quote below, part of the summary:
"The fairly rhythmic bursts of left temporal sharp and slow wave activity with occasional frontal phase reversal could be compatible with an underlying paroxysmal predisposition from this area.
The less frequent and notable changes on the right side may reflect spread from this initial left-sided area."
My neurologist told me that he sees this in some of his lyme patients. I think infection in the brain can cause these kinds of results. I wish I knew for sure what it was, though. Perhaps, when I read through some of Keebler's links, I will be able to put some more pieces together.
Again, many thanks.
Posts: 2386 | From New England | Registered: Aug 2011
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Keebler
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posted
- "slow brain waves" do not, of themselves, constitute seizures unless and until there is a spike . . . the brain REALLY trying hard to wake up, to concentrate.
It is often a fluid sort of -- I do not have words I need now. The book below does better.
"slow wave activity"
and
"The fairly rhythmic bursts of left temporal sharp and slow wave activity with occasional frontal phase reversal could be compatible with an underlying paroxysmal predisposition from this area. "
I had all that as shown on three different QEEGs. Although my "triggering" location was the right parietal. But the MRI did not show any structural issue at that place.
My EEGs did not capture that (although two different technicians told me I had more slow wave activity than they had EVER seen but the doctor would not consider that, they said and that I should not mention they talked to me about it.
Yep, both neurologist, those EEGs were years apart - but both told me EEG was normal and the "noise" or "artifact" was just the machine acting up. They also told me to "get a life and don't come back" after I had seizures in their office. they said I was fine. I had brought up lyme, of course, and since we "don't have that in this state" they were adamant I was fine.
It was later that I explored the QEEG and found some great detail in that.
Back to the "slow wave" activity:
VERY Common to see on EEGs and QEEGs for those with inflammation / lyme.
likely you are sleepy during the times the "slow wave activity" in predominant.
This book does not talk about lyme, however it does talk a lot about slow wave activity. The neurofeedback it recommends, though, was zero help to me -- as with untreated lyme the inflammation and other factors were not first resolved.
what can help with slow wave activity is good sleep, nutrition, Tai Chi, Qigong and addressing the various causes of exhaustion / adrenal fatigue. -
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Keebler
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- As HYPOPERFUSION is also very common with lyme, that lowered blood flow to the brain can contribute to "slow wave"
The Nightingale Foundation is where I first learned about this.
one link that speaks to this low brain blood flow:
1/3 way down, see article mentioning hypoperfusion. Note that ME / CFS is very often caused by lyme so the references here coinside. -
[ 03-26-2016, 10:02 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Sorry for the spurts of thought.
Better than the book above,
Google "Myra Preston" and QEEG, "slow brain waves" or some of the terms discussed in posts above.
I think her site is something like SIBER neuro.
She is excellent and has work with the CFIDS community for many years on this very issue.
The third of QEEGs was sent to her for her evaluation and she included "as seen in lyme disease" or something similar. Lyme was included and tied to the "slow brain waves" in my QEEG anyway.
Do see what she has to say about all this. sorry I just can't look that up now, just toast.
I also assume you were not taking any antidepressants, pain or sleep Rx for at least a week prior to the test. They can skew the results can cause "slow brain waves" themselves. Any Rx that causes sedation can. Neurontin, Gabapentin, Lyrica also in that category.
Some supplements like GABA, valerian and even melatonin can, too.
good luck -
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dbpei
Frequent Contributor (1K+ posts)
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posted
Keebler, I am so sorry you were treated like that! Wouldn't you love for those people to live in your shoes for a few days or weeks and that would change their behaviors fast!
I am going to look at all of these links you provided. Thank you so much! I have also had hypoperfusion in a brain spect scan and also a recent abnormal brain pet scan and neuro psych testing for someone my age. It all adds up to damage from chronic tick borne illness.
In answer to your question about the preparation for the EEG, I was told to go to bed 2 hours later and wake up 2 hours earlier. It was hard for me to do, but I think I managed to get there on about 4 hours of sleep.
I do not take any sedatives or SSRIs. But I did continue with all of my supplements, which include lysine, vinpocetine and anti-inflammatories like curcumin and fish oil, which I suppose could have affected the results. I started lithium orotate soon after the EEG, with the support of my LLMD.
I will be sure to mention this to the neurologist when we meet. I am pretty sure he told me it was okay to take all of my meds before the EEG...
I am not a great sleeper, so did not sleep while on the table for my EEG. But I know I rested. And I also happened to have one of my episodes, where I hear a symphony of chimes in my deaf ear out of the blue. (this is different from the constant tinnitus and sizzling I hear!)
Now to get to that reading!
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