I was going to just post this in General, but thought I'd put it here too - hope that's ok.
In May I had a scare - I was at work, and I got one of the worst headache I've ever had in my life. It just all of a sudden flew into the right side of my head.
It actually made me double over - I thought I was going to pass out. It lasted a few seconds, and after it let up, I felt very "out of it".
Kinda out of touch with reality. I had to think about what I wanted to say and it also affected the left side of my body (ie: I couldn't walk right for almost a week - it affected my arm and leg on left side)
I also woke up the next day with Bell's Palsy on my right side. I was eventually sent to a neurologist. I had an MRI and an EEG done. My MRI was normal, but my EEG results were abnormal.
The results said I have peroids of "slowed brain activity" ( , my kids had fun with that one)does anyone/or did anyone have something similar happen to them?
Background info: I have lyme disease (I've most likely been infected since age 3 - I'm now 45)
I've been on lymenet before, but haven't posted in a while because I've had to get a job, and it takes about all the energy I have.
Thanks ahead of time for any responses,
Blessings, ArtnSoul (Be nice to me, I have peroids of slowed brain activity )
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
ah, the lightning special effects...yes, they have hit me too. Severely in the beginning, and once recently during a stressful time.
I have read that bartonella can cause electrical storms.
When one has several co-infections, it is hard to keep symptoms separate. I treat for both, so I cant say which. I have seen several bart posts here that mention seizure type activity, without hospital evidence of seizures.
Check out Seibertneurolyme's posts ,
and up for the evening visitors.
I hope you have lined up a llmd as relapses are known.
Did they even check you for a possible stroke?
Slow brain waves, huh? Or hypoperfusion causing a problem? LLMD would know how to get to the source.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
It would be interesting to compare our EEGs. I had one done under similar circumstances. The neurologists didn't describe mine as "slow", but just that they were abnormal and didn't fit the picture of anything they could identify.
I had a splitting headache at the time and mine was done soon after I had my first episode of Bell's palsy on the left side. This was before I was diagnosed, so had rec'd no treatment.
If they were similar, maybe we could start establishing a pattern for Lyme brain....
Posts: 975 | From California | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Hey, it's great you actually got some constructive feedback from an EEG.
And - with treatment, don't worry . . . your brain can wake up again. Really. Infections cause slow brain waves. It does not mean you will always be tired and slow. Treat the infection and the brain will heal.
In the meantime, do not overtax. Rest when you can. I hope you can find help to do the things that are most taxing.
I may be able to copy and paste a lot and sometimes, write a whole note . . . but I still cannot pay a bill to save my life.
I have it all in my head, but writing it out, recording, writing the numbers . . . and, curiously, math is what showed the slowest brain waves on my QEEGs. I even had seizures trying to do math, my brain just tired so hard.
Other than anti-lyme treatment: of help are fish oil and Gotu Kola (not a kola - see PubMed for abstracts )
In 3 or 4 EEG's the neurologists all said were fine, but the techs pulled me aside when they were out of the room. 3 out of 4 times, a tech was the one to say "something's not right here . . . but it won't show they way they interpret these tests" or
"you have some very slow brain waves, but the doc can't see that because that's not what he's looking for"
another said: "this is the most unusual EEG I've ever seen. The doctor thinks the equipment went haywire, but it did not. Just hang in there, kiddo . . ."
then 3 QEEG's done by a Ph.D., a audiologist and a ND each showed slow brain waves
one reported: "consistent with borrelia, affecting the nervous system . . . " - one said: "appearing as encelphalopathy (sp?), chronic"
QEEGs are not accepted by most doctors. Big mistake. they can be very valuable tests.
A functional EEG is similar to a QEEG. Some doctors do those but most rely on the older, limited tests.
Also, in addition to treatment for infection, adrenal support, liver detox, rest and Gotu Kola . . . Tai Chi or Qi Gong can be helpful for the brain to retrain.
Certain kinds of music, too, mostly classical and mostly Mozart or Haydn . . . and 3/4 time works such as waltzes.
Even if very slowly or only for one minute, a few times a day, dancing or making your own music is very healing to the brain to make new connections.
and, the great thing is that you can just lie down and rest for music, too. And it can still stimulate and calm all at the same time.
I find the string quartets easiest to handle. Piano can be very jolting sometimes, but neither of these musicians dumped bad moods into their music, which is very nice.
posted
Thanks everyone for all your responses. I was worried that I may have had a stroke, but with all of the tests I've had,
the Dr.says there is no evidence of stroke. He does want to do another EEG in the future.
I'm kinda surprised that the EEG was abnormal. It seems over the years with lyme - things go wrong with my body - but the tests always come back normal.
ArtnSoul
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Curious...that happens during Delta sleep...slow waves.
See my reply to James' Ambien post regarding what happens during delta sleep.
Looks to be very defensive.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Hubby has had many EEG's -- some are "normal" asnd others are "abnormal" due to slowing in the left temporal lobe. He has never had seizure spikes. Many seizure meds were ineffective.
He started Lyrica -- a new seizure med about 6 months ago. It has helped because it works differently than other seizure meds. Lyrica supposedly works as a calcium channel blocker for the brain instead of the heart -- helps balance calcium and magnesium levels in the brain.
Slowing on an EEG can be due to meds such as Ativan and other psychotropic drugs, but in Lyme patients it is usually caused by encephalopathy. This is a subclinical encephalopathy that can only be diagnosed by EEG or neuropsych testing which indicates cognitive problems.
There are documented patterns of how tick-borne diseases affect cognitive processing -- problems with mathematical abilities and word retrieval etc are well documented.
As for the Bell's Palsy -- some research indicates that even in Lyme patients this is more often caused by viruses.
If viral issues are suspected then St Johns Wort tincture and lemon balm tincture or capsules could be of benefit. The herbs did seems to help hubby. He had transient Bell's Palsy -- it would come and go -- acted up when other brain symptoms or G.I. symptoms were at their worst.
I would be sure to test for and/or treat coinfections. I do think hubby's worst brain and neuro symptoms are from Babesia and Bartonella -- not Lyme.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
seibertneurolyme you sound very knowledgable.
So are sudgesting that lyrica might help in healing the brain?
I know I take it ocassionally to help me sleep. But it leaves me a bit flattlined emotially and cognitivelly the next day.
Its not bad, but it isint the best. But I would rather take that then have a night with no deep sleep.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
seibertneurolyme you sound very knowledgable.
So are sudgesting that lyrica might help in healing the brain?
I know I take it ocassionally to help me sleep. But it leaves me a bit flattlined emotially and cognitivelly the next day.
Its not bad, but it isint the best. But I would rather take that then have a night with no deep sleep.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
seibertneurolyme wrote - Slowing on an EEG can be due to meds such as Ativan and other psychotropic drugs, but in Lyme patients it is usually caused by encephalopathy. This is a subclinical encephalopathy that can only be diagnosed by EEG or neuropsych testing which indicates cognitive problems.
Can someone please post those documented patterns of how TBD affect cognitive processing. Hubby's neuro-psych eval says he was "faking it".
They have no idea how TBD affect the brain. Maybe some studies would help our defense of his disabiliity.
Thank you in advance for your help. I never cease to be amazed at the quality of information available on this board.
Posts: 252 | From USA | Registered: Sep 2003
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posted
seibertneurolyme wrote - Slowing on an EEG can be due to meds such as Ativan and other psychotropic drugs, but in Lyme patients it is usually caused by encephalopathy. This is a subclinical encephalopathy that can only be diagnosed by EEG or neuropsych testing which indicates cognitive problems.
Can someone please post those documented patterns of how TBD affect cognitive processing. Hubby's neuro-psych eval says he was "faking it".
They have no idea how TBD affect the brain. Maybe some studies would help our defense of his disabiliity.
Thank you in advance for your help. I never cease to be amazed at the quality of information available on this board.
Posts: 252 | From USA | Registered: Sep 2003
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posted
Thanks for the responses! I'm just tired of being worn out.... The neuro. Dr. I'm seeing doesn't know I have lyme -
it's a long story - I've had an experience in the past with one of my daughter's ducks (dr.)
that he told us we were part of a "cult" (the people who believe that there is such a thing as having lyme for years - or all your life as in my children's case)
Anyway - I was kinda surprised that something actually showed up abnormal in my EEG. I have a chart that looks like a novel at my family Dr.
But they very rarely find anything. Mostly I think they think it's "all in my head" (at least they're partly right - it (lyme) IS in my head - my brain!)
My neuro Dr. wants to repeat the EEG sometime. He kept asking me if I've ever had any seizures.
He said the results were typical of what he would see of someone who has epilepsy.
I have never had any seizures that I know of - but it got me thinking. I have had something happen to me a few times - I mentioned it to my dr. once...
He looked at me like I needed to be put in a straight jacket, and he kinda laughed it off.
Anyway I have had this weird sensation like my brain is vibrating, like an electrical shock runs through it.
As soon as it happens, it goes away - but for a few seconds afterward I feel really weird, sort of "spaced out" and I can't think straight.
This probably only lasts like 10 seconds or less. I wonder if it has anything to do with the "slowed brain activity" on my EEG.
Maybe I'll get up enough courage to bring it up in my follow-up visit with the neuro.
Thanks for listening... Blessings, ArtnSoul
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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, my kids had fun with that one)does anyone/or did anyone have something similar happen to them?![[Big Grin]](biggrin.gif)
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