Having seizures with body jerking and out of it. I look like Mandy with seizures in the film "Under Our Skin". Started months ago with rage, agitation, certain body pains and gut symptoms cognitive decline, etc. and progressed to anaphylaxis and now seizures. EEG normal. Postive for many viruses, Lyme, Mycoplasma, Bartonella clinically.
Who of you had seizures and what did you do for it? What meds and supplements? How did you cope? What adivise and validation can you give me. I cannot care for myself, and I have lost everyone due to brain infection and the way I am now. After 15 yrs of Lyme this is maybe the worst I have ever been.
Posts: 103 | From California | Registered: Jan 2003
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Robin,
I have had similar episodes as to what you describe.
I've had 4 that I remember during waking hours. Lasting an hour-in and out of being able to respond. Full torso convulsions, with my neck going backwards at a funny angle.
Several suspect incidents during sleep.
I only got them when my head was having bad brain days and my neck was too stiff to move.
Minocycline hands down helped me the most. (with tinidazole) pulsed and rifampin.
I can be around sharp or loud noises now, and it doesn't set my reflexes off.
Mino mino mino
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I had seizures, but they were complex partial and simple partial seizures. I was treated with Trileptal for 3 yrs. and haven't had one since.
How long did they do the EEG for? Did you have a seizure during it? An EEG can even look normal while having a seizure during EEG. It depends what area of the brain they are occurring.
-------------------- j_liz Posts: 471 | From NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear of this. I am no stranger to this category of events. Much of what I've learned in here, hope it helps.
posted
J-Liz and Greta thank you. I do love how Mino helps but not sure I can take it anymore.We'll see. And Liz, good questions. The EEG was about an 45 minutes and yes, I had seizures during the EEG when they were inducing them. Non-lyme neuro thinks a video EEG for 48 hours would be next step.
Posts: 103 | From California | Registered: Jan 2003
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posted
Is one responsive during a seizure or partial seizure?
Posts: 832 | From Somewhere | Registered: Nov 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Terv,
Between the convulsions, they would come and go, I remember saying one time, "I hate this" and crying.
But during the convulsions no.
Also another time, when they started up I said, "Sorry" because I was visiting my grandma, and I didn't want her to be scared.
Those times were particularly bad. Even between convulsions, I couldn't respond, but could see and hear. It was like being underwater and looking up at someone when they aren't under the water.
My neuro...haha. What a yahoo. Told me these were migraines.
So I never did get an EEG to check for seizures, although he did reccomend two seizure meds and an antidepressant to help me with my "migraines".
Ha! What a yahoo.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- terv,
you ask "Is one responsive during a seizure or partial seizure?" (end quote)
Responsive (as in able to move to thoughts or commands), no.
But remember, that you can have seizure activity that is interrupted, so to speak . . . moments where it lets up and you can move or grunt, etc. Some seizing can last just a second or two, like but keep repeating so it can be confusing.
Laughing, crying, can also be part of the seizure.
Aware? Yes they can be. I have been aware during mine, other than for the seconds immediately following the trigger when I pass out.
With lyme, this is the case but many neurologists will think that if one can hear or remember anything being said during that the person is faking it.
They are very wrong. Most neurologists will NOT know about the kinds of seizures caused by lyme and TBD. For anyone with seizures and lyme / TBD, be certain that an ILADS educated LLMD is on the case -- only go to professionals they suggest.
A QEEG is often better for those with lyme but one key point is that seizures may not show up on an EEG but that does not mean they are not happening.
An EEG does not record all necessary information and can only "reach" certain brain parts.
A QEEG will record slower brain wave activity and patterns while one is doing functional tasks.
Also to keep in mind as to why some lyme / TBD seizures may not register as coming from a particular part of the brain is that it can be an overall overload and liver toxicity is also involved, that may not register in the EEG.
I cannot tell you how many neurologist were beyond baffled, told me the very seizures during my tests were "artifact" or even that the equipment must have been broken because they've never seen anything like that - and I must have been making it all up.
Three QEEGs, however, by 3 different professionals at different points in time DID all record seizure activity from a particular part of my brain that all the EEGs (more than a have dozen) missed.
But MDs will not recognize QEEGs in general and insurance usually won't cover. Still, I know what I need to know. Neurologists have been no help and cause so much damage, actually.
I've been spazing out on the floor on several occasions only to be asked by someone nearby who happened to be a nurse or other medical professional how long I'd had grand mal seizures and telling me to get checked out (all the while the neurologists would discount my experiences).
See your LLMD about this. They will know the best professionals in your area for further help (if they exist). But, mostly, if lyme related, usually with lyme / TBD / magnesium issues, etc. are corrected the seizures fade away.
A Gluten Free diet is a must, though, IMO. Details in that thread help explain more. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Robin,
If you are using your real name and real town, I can see how old you are, your address and phone with a basic web search. This poses a privacy risk for you. You might at least chance the exact town in your signature.
Hands numb now, others will have to take it from here. good luck. and, yes, this can get better. Really. there are always other ways to approach.
hope those helping you are as LL as possible -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I asked that question because my mother-in-law who has lyme started shaking uncontrollably and then her knees buckled. She seemed totally aware that her legs were giving out because she was calling for help.
She has essential tremor which she has had since she was a teenager.
I am not sure if this is a seizure or what. Unfortunately she is too frail to treat her so the disease gets to take its course with her.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IMO, it's a seizure. But there are many kinds, and various causes. Beyond the causes, there can be various triggers and mitigating factors.
Anytime the nerves' signals go haywire and cause muscles to contract or spasm (seize), that is a seizure. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And some seizures cause no apparent movement in muscles / limbs / extremities / torso. Some are just blips on the screen, so to speak. It can cover an entire spectrum. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
With the complex partial seizure I was unresponsive and didn't know what had happened. If a friend didn't witness it, I may never have known. With the simple complex I was totally aware the whole time, every time and I would've never guessed it was a seizure.
I had my leg start shaking one time in a store. I had to stand with my wt on the other and didn't think it would last long enough. I am sure if I stood on the shaking one, it would've collapsed.
However, her shaking leg could be a seizure, a simple partial.
I know it's confusing, it's confusing to most drs.
-------------------- j_liz Posts: 471 | From NJ | Registered: May 2009
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posted
It sounds like she is having some sort of seizure.
We have tried giving her magnesium but she can't swallow the pill. We tried the magnesium that dissolves in water and it gives her diarhea.
She is taking the sub-lingual b12 but swallows it because she cant understand that she has to keep it under her tongue.
We tried abx but the herx really made her bad. She was falling all over the place. Hallucinating etc. She ended up in nursing care where she refused to eat or drink. She is back in assisted living but really requires a dedicated aide 24/7. She can't afford it.
Watching her brain and CNS deteriorate is what keeps me pursuing lyme treatment.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
I will ask about the oils and the magnesium spray.
The problem with her being in assisted living is that everything, including all supplements, has to be prescribed by a doctor. She lives about 2 hours from us and my brother-in-law is in charge of her health care. So we have to get my BIL to get the doctor to prescribe stuff.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Try sublingual B6 as PLP/P5P. It is cheap and it is available over the internet. (Sublingual means under your tongue). They dissolve and work FAST.
Then...consider taking 50mg of PLP/P5P per day...as a precaution if the above works.
My son has glutamate triggered pyridoxine dependent epilepsy....***the gene involved impacts lysine metabolism.***
The conversion from glutamate to GABA (accelerator to brakes) requires B6....enough of it in its active form.
There is a Na connection too, but I won't go into that part of the explanation.
Mention lysine to your LLMD...he will understand the Bb-lysine connection.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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