aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
So I've been having some problems over the last weekend.
Was sitting in the recliner when back of skull felt funny and got really dizzy and my vision seemed wobbly.
4 hours later it hit again but lasted longer about 8 seconds and was harder and felt the back of my brain spasming.
Felt like I had a concussion, my vision wobbled the whole time while it happened and later ended up puking my guts out.
Felt out of it and went to bed.
Next day...got upset over something and felt really weak and had to sit down.
BAM! Felt like I got struck by lightening and my left arm started to spasm followed by all the rest of me. Was aware the whole time, just didn't know what was happening.
Then I blacked out for awhile. Could hardly get my head off the table and when I could went to bed. Really felt sick, nauseous and dizzy.
Exhaustion lasted for a couple days. Oh, this happened the week my meds were decreased.
Am being treated for Bart.
Meds increased and changed, feeling somewhat better.
What the h***??? Anyone else experience this? I've had blackouts before but only a couple seconds while on Flagyl.
But brain spasms? Seizures?
My nervous system seems fried. Super nervous and hyper but that's calming down since med change.
Any help would be appreciated.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6159 | From Columbus, GA | Registered: Jul 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I deal with much that you describe. I'm pretty low on the energy line right now so hope others come along.
in the meantime, do you have some inner ear stuff going on?
Do you have some ginger in your spice cupboard ?
If so, a little ginger tea might be a good thing to settle down the vestibular system (inner, middle ear, balance, etc). It will also help with nausea.
I hope you have nothing in your food plan that includes MSG (in any form - google for those) or aspartame / nutrasweet. Check even you cough drops, gum, toothpastes, etc. Any sugar free product could contain it. Avoid all this.
I'm sure you already avoid alcohol, but just in case not, that can have tremendously bad side-effects with flagyl (as well as with other Rx).
I hope you can talk to your doctor. this sounds like something s/he should know about. Advise here may not pinpoint what is going on with you, now.
posted
I have what I think are myoclonic seizures sometimes: a limb will start jerking for awhile. I had one last weekend, and since then, the right side of my head has had this weird dull pain all the time, and my right eye is blurry.
I do think this could be related to bart, as I started having these seizures when I started having cardiac problems my doctor now thinks are bart-related. I have been off of treatment for bart since I stopped Cipro and my liver enzymes became elevated, and I think this is bart symptoms returning for me.
I am about to start Rifampin for bart, so I'll try to remember to post again if that stops the seizure-ish symptoms.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had myoclonus. Yuck, glad it's gone!!!
If you are having symptoms that could be from anoxic encephalopathy- fugue states, amnesia, coma type events- this may be a sign you need to be on IV because the risk may be well worth it at that point. If you are encephalopathic and having these events, I would take them VERY seriosuly and talk to your doc about aggressive treatment. If you are not encephalopathic I would not. Just my 2 cents, not a doc, just been around the block... hey that rhymes!(!!
Take care, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Are you on abx that cross the blood brain barrier?
What you are experiencing doesn't sound (vestibular) inner ear related to me at all. I have experienced both, inner ear (vestibular) problems don't cause blackouts.
An ENT Md I use to see for vestibular problems, said "there are 3 things that cause dizziness, vestibular, brain or heart". He also said "true BPV (vertigo - vestibular problems) caused by the inner ear will dead stop if you stop moving your head. Hence the name. But if it doesn't then have your heart checked and your brain. Brain first.
One of my first LD symptoms (10 years ago) was extreme dizziness, I had BPV for 3 months straight! Insane!! I literally had to learn to walk without turning my head quickly or looking up quickly, or spinning would start..those are signs of inner ear vestibular problems, blackouts are related to fainting and syncope: http://www.medicinenet.com/fainting/article.htm
Now the same things occur to me, as you experience (except blackouts) when I am abx that cross the bbb. I can tell the difference from my previous vestibular problems, this absolutely comes from the brain, that I know. It is scary and if I back off abx for awhile and the symptoms subside.
I have had 99.9% nervous system issues for 2 years and like you I fear mine is fried too.
If you haven't experienced this before and are on abx crossing the bbb, if it were me I'd back down some to see if it subsides, then you will know if it is herx related.
Don't forget - check w/your LLMD as soon as you can to make sure this is "normal" for the drugs you are on, etc.
As soon as you feel the nausea coming on chew up 2-3 papaya tablets (any vitamin store) nausea is gone in 10 minutes. I use to be a huge ginger fan until I was told to try chewable papaya tablets, they work faster and better.
Hope you feel better - there is NOTHING more scary - I feel for you.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there,
Still feeling hyper tonight and jittery. Seemed like my vision was a little wobbly again too but didn't notice anything with the brain.
Went to my GP yesterday and found out my lymph nodes in neck are slightly swollen.
Will return to her next week and get a referral to a neurologist.
Keebler, just have alot of ear pain and some kinda rash coming out of my ear canal onto the lobe on right side.
No alcohol and have been on magnesium for about a year and a half.
LymeC, know what you mean about the one-sided head pain and blurry vision. Have had that for quite a few years. Back in 2003 had double vision for about a month. 6th nerve palsy was the cause.
Am on Cipro/Biaxin but no Flagyl added yet.
CALyme, was thinking encephalitis too. Have been on diuretics for years but seem to still have a lot of head pressure and pain.
This was really different though. Am trying to get a referral to a neurologist now to get an MRI and ask to be checked for encephalitis.
Thanks for the info on anoxic encephalopathy. Don't know what that is but will check it out on the Internet.
Lymebytes, am not on any BBB that I know of unless Cipro/Biaxin are. I don't believe this is an ear problem either. Felt that back of the skull spasm and am really worried.
Still am not quite right.
Thank you all for the wonderful info and will check it out. As you can imagine am worried because this hasn't happened to me before.
Will post when I find out what the cause is.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6159 | From Columbus, GA | Registered: Jul 2004
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