Topic: Best way to control limbic seizures / overactivity?
Many LINKS, what's happening & what helps.
Start with: MAGNESIUM, FISH OIL, finding a good LLMD -
[ 04-21-2013, 12:55 PM: Message edited by: Keebler ]
Posted by Pocono Lyme (Member # 5939) on :
I get the numb cheeks. I had Bell's Palsy in the past of the right side. Mostly now it's my left cheek that gets numb.
It often gets worse with activity. I am unable to be active very often and not heavy activity at all.
I often thought of stroke too as I will get heaviness in one leg also.
I do have an abnormal SPECT scan so wonder if it is in fact a blood flow issue. Otter's reply could also explain it.
Posted by Hopeful in Holland (Member # 34304) on :
Thank you all for the responses.
I have LLMD and have an appointment.
I was wondering about the seizures. My neurologist said seizes were psychosomatic? Then cheek went numb not long after. i have had the swooshing in my head and headache for weeks now.
I had Bells PALSY before I started treatment, however this is really not the same at all.
Posted by Keebler (Member # 12673) on :
- Sorry that you have encounted medical abuse of a high degree.
Sadly, most neurologists say those with lyme have ALL symptoms that are psychosomatic, but especially seizures.
That's what several said about the kind of seizures I was having. Their EEGs failed to pick up -- or rather they failed to acknowledge what their EEGs did pick up and told me that it was impossible and the machines must have been malfunctiioning.
A few technicians - different times, different hospitals - privately whispered to me that they could see irregularities but the neurologists would never agree.
But they could have lost their jobs had I said they told me anything. So I could not ask the neurologists about it -- but they were all beyond abusive to me in so many ways.
I will NEVER see a neurologist again who is not LL. And there is only one - maybe two - in the whole U.S. So just say "no" and don't even go back.
This is why it's best to see ONLY - ONLY - lyme literate ILADS educated doctors.
For what it's worth: 3 different QEEGs (different, better, IMO to a typical EEG) . . . different times, different practitioners . . . each clearly showed the same abnormalities in my brain waves and the same place in my brain where seizures spiked.
And, this is typical of those who have lyme and seizures. It also verified the slow brain wave patterns.
Even if not due to lyme, neurologists just can't wrap their head around seizures that involve other body systems:
the inner ear can trigger seizures; the liver can trigger when toxins get too high; adrenals can trigger when the endocrine system is not functioning. All that goes with lyme, and much more.
Treatment often corrects - directly for infection and support. Every good LLMD is no stranger to patients with seizures.
Many are triggered by sensory startles with flashes, sudden sounds, motion. Part of that has to do with the involvement of the inner ear with lyme, too.
Best of luck. -
Posted by seibertneurolyme (Member # 6416) on :
It may not be true seizures -- but EEG's are not really that great of a test. A QEEG would show in more detail how your brain is functioning, but few docs order that test.
Seizure-like spells are common with lyme and tickborne infections.
What you describe definitely sounds like neurological involvement, but frequently the most common neuro tests will not show what is going on.
Even with normal MRI, CT and EEG you can have low grade brain inflammation or infection or neurotransmitter imbalances etc which can manifest as symptoms that the average neurologist cannot explain. And if a doc can't explain it then of course it is psychiatric -- NOT!!!!!!!!!!!!!!!!!!!!
A good LLMD may be able to prescribe seizure meds if he/she feels they are needed -- many do not help since the real problem may be due to brain inflammation/infection or even could be due to lack of oxygen to the brain or lack of specific nutrients.
Please do your best to keep some sort of symptom diary and let your LLMD know of any new or drastic change in symptoms.
Keebler knows what she is talking about. It is a good idea to try to pinpoint any triggers for seizure-like activity and avoid those if possible.
Food additives and especially MSG and aspartame need to be avoided for many people.
Since it is early in your treatment it is difficult to say how quickly or well your seizure-like spells will respond. But do not give up.
Hubby had multiple times daily seizure-like spells for around 8 years and at one point due to aggressive babesia treatment his spells went away for over a year until he got 2 additional tick bites.
If you can afford it a brain SPECT scan could show more info. But it needs to be read by a radiologist who is familiar with tickborne diseases to be a valid test. Columbia Presbyterian in New York is the best location to have this test done, but I am sure there are a few other places that know how to interpret the test. If you are seriously considering that test then I would post another thread and ask if anyone else has had the test done at whatever facility you are considering.
A brain SPECT is actually cheaper than an MRI, but it is not a standard test and insurance will most likely require preapproval. As long as the ordering physician knows to request that the test is being done because of suspected brain infection then it should be approved even if it has to be appealed to get the approval.
Posted by tdtid (Member # 10276) on :
Hopeful in Holland,
Before my 5 year search for what was wrong with me came to my diagnosis of lyme, I was sent to every specialist out there. Much like most here.
In that, I had been given an EEG. The Doctor said I was having mini seizures. I blew it off since I knew I had too many other symptoms that this wouldn't come close to solving.
Bea is right. EEG's have many faults and can miss a lot. So I wouldn't say that having that test not show something means you don't have seizures.
Sadly, most of us know our bodies best and what we are going through and we do know when their is a problem, even when the doctors choose to ignore us.
With that said, as my lyme progressed, yes, I had mini seizures or would pass out and have no idea what had happened. Don't remember a thing in these times.
Also, have had every part of my body numb at some point. I use to equate it to having novacain at a dentist. It would be completely numb with no feeling. That usually tends to follow under the neuro symptom category but as Otter also said, it could also be the start of Bell's Palsy.
I was lucky never to get that, but a few in my first support group suffered with it.
I'm not a doctor and sadly, I use to think I was starting to understand more and more about this disease, only to find out I knew hardly nothing. So for this reason I won't try to guess whether it is lyme or else a co-infection.
I honestly thought I had that good ole list of symptoms memorized so I would know which went to what. But then after you start hearing about all the symptom over laps, I decided to stop second guessing and get me a good LLMD.
My best advice is to keep treating. It will give you hope when various symptoms start reversing. It's a slow process but so worth it on the other end. Hang in there.
Posted by glm1111 (Member # 16556) on :
Best to look into treating parasites/worms. Numbness of the hands and feet are listed among the symptoms at the Humaworm symptom list.
Ten yrs ago, my head, chest and pelvis went completely numb and I was also stuttering Turned out I was loaded with parasites.
After taking antiparasitic herbs and salt/c, this is what came out of me. www.lymephotos.com Burgdorfer found Filarial worms in the original ticks he dissected. Check out the PARASITE WARRIOR SUPPORT THREAD. I will bring it back up for you.
Posted by Hopeful in Holland (Member # 34304) on :
Thank you all.
LLMD put me on Leviquin and said it is part of Bartenella and Babisia, which I am still positive for.
He stated "Bannwarth Syndrome". Still trying to find info. Wikijust sends to lyme page.