I haven't written on Lymenet in some time but I hope some of you may remember me. Hi to you all.
I have been experiencing a disturbing development. I have a headache in the back of my head/base of my skull that feels like electricity. Twice in the past week I've fallen to the ground when the electricity feeling seemed to explode throughout my head. I literally feel as if I'm being electrocuted.
I then have extreme muscle spasms and I slap my head, bang my head, clap my hands, smack my lips, and speak nonsense in a slurred voice. I am aware and yet feel "out of it" at the same time. I feel nauseated and my spine hurts, too. This lasts for about five hours as I gradually come out of it.
I've been diagnosed with bart/bab/Lyme and I am cyclically treating all three with rifampin, malarone/zith/art, and mino/flagyl.
Is this what they call "encephalitis"? After the attack I still feel ill and have the headache, like it's just waiting to attack again.
I am suffering; this is hard for me to live with. Does anyone else have anything remotely similar in their history?
Thanks for any input!
- Lymelady
PS - I'll be calling my LLMD for advice, too.
Posted by radfaraf (Member # 11909) on :
It sounds like it to me though I have not heard of the electrical sensation part being part of it, the rest is spot on.
Maybe you are overdoing the medication thus causing too much of a herx? You mentioned it lasting for about 5 hours, can you tell if the timing is related to taking your meds or something else you are doing?
Posted by Veromia (Member # 22031) on :
So scary! Go to ER for cat scan during this.
Posted by Myco (Member # 9536) on :
Sounds like a herx. You are on a very powerful combo.
I am on Rifampin and Zithromax, have bart and get painful head spasms also. Feels like a squeezing sensation in the head, then as though my head might explode. Flushing, disorientation, slight nausea, a little clammy. Sound familiar? My MRI/MRA was normal. Only since starting the combo have I had this. I otherwise feel fairly normal.
My LLMD said if you can move your head side to side, touch your chin to your chest, have fluid movement there, you most likely DO NOT have meningitis.
Posted by bettyg (Member # 6147) on :
Neck hurt first then extreme haedache which just gets worse until it feels like your head is going to explode then eyes even hurt to blink and everystep you take will feel like head is blowing up.With me anyway
Posted by MY3BOYS (Member # 17830) on :
the episodes sound very scary. concerned about the movements u describe of clapping hands, smaking lips, hitting head and being aware but out of it???
you mean you are doing this but unable to control the movements right??
call LLMD or NEURO...best if u have neruo on board...
are you on any meds for depression, anxiety,etc..
some meds can cause "Extrapyramidal Side Effects"....please look that up. sounds like what you are experiencing and contact your treating physican ASAP---today. talk to nurse, not receptionist
esp. if this just started suddenly. the duration of 5hr is very long !!!
hope this info helps, pls take seriously
Posted by sutherngrl (Member # 16270) on :
When I had encephalitis as a teen, I had the worst headache I have ever had. Similar to what treepatrol describes. Did not have the electrical feelings that you mention.
Also another symptom is not being able to keep yourself awake.
Maybe what you are experiencing is a migraine. I started having those recently. And I did not know how many different ways you could experience a migraine, until talking to my doc about it.
Whatever it is, you need to contact you doc!
Posted by seibertneurolyme (Member # 6416) on :
Lymelady,
Hubby was asking me recently how you were doing since you have had many similar symptoms to his.
Wondering if what you are describing could possibly be seizures -- think there is a type of seizure called a "drop seizure" where someone falls down.
Hubby has had most of the symptoms you describe although not all at the same time thank goodness.
I think with encephalitis or meningitis severe headaches and light and sound sensitivity are the most common symptoms.
My guess would be either seizures and/or vasculitis which I think is much more common in Lymies than is actually diagnosed.
You mentioned you are cycling/pulsing meds -- were you on the same med combo each time you had one of these attacks?
Are you taking anything for hypercoagulation or any seizure meds?
Let us know what your doc says. This sounds really debilitating and scarey as well.
Bea Seibert
Posted by pigwit (Member # 9059) on :
Lymelady, your symptoms sound a lot like what I experienced after a tetanus vaccination. Have you had any vaccination lately?
I still have some of the symptoms 2 1/2 years later.
Posted by lymeladyinNY (Member # 10235) on :
Thanks for the replies, everyone.
Pigwit, I did indeed get a tetanus vaccine earlier this year and was here on Lymenet lamenting that I'd ever had it done. I got seriously ill from it. However, this past summer I had the best health I've had since I got sick 6 years ago.
Bea, I think you might be onto something with the vasculitis idea. I've been having a lot of bartonella symptoms lately and it's corresponding with the electric headache. I looked up vasculitis and it is scary! And the treatment is steroids! I cried my heart out to my hubby last night from fear.
He's a good, calming force in my life and he got me through it. After I post this I'll be calling my LLMD, though I don't know if he'll be able to talk to me until my scheduled phone appointment next Monday.
After more research I don't think this is encephalitis. I DO think it's vasculitis. Please pray that I can get this under control, everyone. Thank you!
- Lymelady Julie
Posted by treepatrol (Member # 4117) on :
You also may have a piched nerve in your neck worse if its in the highest area I cant remember what its called but at the base of the head there is a piece of your brain that extends into the base of scull if its swelled in that area or born with this tight defect area it can be very serious. I would see llmd and a neurologist recommended BY the LLMD and have him explain what to look for id lyme the tight area the nuro should recongnize.
Posted by Keebler (Member # 12673) on :
- The falls to the ground could be some kind of seizure, as well as some of the other symptoms sound like that, too.
Yes, a pinched nerve could be involved and falls can be from many reasons from inner ear, brain or cardiac stuff. What you describe certainly has been reported by many lyme patients, however, not everything is lyme. The "speak nonsense in a slurred voice" could be a minor stroke. However, I've had all of what you describe with the kind of seizures I get. (Again, for me, lyme seems the bottom line).
I hope your LLMD has some clues and answers for you. If this is a stroke of some kind, immediate care is important. If your LLMD has not called you back, please call again.
---------- encephalitis?
There is also a chronic encephalopathy that many lyme patients experience. That would be a chronic inflammation.
I'm sure if you cross search encephalopathy with lyme (or borrelia - or other TBDs), you would find many articles. -
Posted by lymemomtooo (Member # 5396) on :
My daughter was diagnosed with either Lyme or Bart encephalitis..She was out of her mind nightly and was often violent. She curled up in the fetal position.
Sometimes she would bang her head against stuff to stop the pain. She was on oxycodone for a time. She was also on IV Rocephin and IV Doxy.
She saw and heard non existent things and could be violent with rages..Good luck..lmt
Posted by IckyTicky (Member # 21466) on :
What you are describing sounds more seizure related.
When I had encephalitis... I could not even lift my head off the pillow because it felt like my brain was trying to come out of my skull... the pressure was just horrible.
I had really bad headache and it hurt to move my eyes at all. For awhile I was just out of it, didn't know when people came and went and would talk out of my head.
Your symptoms sound a LOT like a seizure with the lip smacking, clapping, slurred nonsense.
Posted by lymeladyinNY (Member # 10235) on :
Hi all. I called my LLMD and he won't be in the office tomorrow and has no available opening Thursday. So, as I suspected, I'll need to wait until my Monday phone appointment.
I talked to his secretary and she said she's sure my LLMD will want me to see my local primary doctor about this. I feel so reluctant because I've already had seizure tests, MRIs, catscans, etc. in the past and nothing ever shows up.
Many doctors at my local hospital think I'm a faker because of these normal tests. I just don't know where to go with this. As I sit here I feel as though a brain attack could come at any time.
I made an appointment with my primary for tomorrow but I don't know what good it will do. I hate to be in this situation where you know they don't know jack and they already have a preconceived notion about you. And yet, your LLMD is far away and can't do anything over the phone, anyway.
Well, perhaps some testing could rule things out again. Sigh.
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