posted
So sorry Heather...Just want you to know you are in my thoughts and hope the doctor's appointment goes well and that is the last seizure...
Take care and keep us posted...
-------------------- “Pride is concerned with who is right. Humility is concerned with what is right.” - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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Carol B
Unregistered
posted
The feeling strange , hard to describe feeling, may be "auras" of seizure activity. Some people experience them with seizures, some do not.
It's like a precurser to having a seizure-but technically I guess it is considered a seizure,too.
Anyway I was truly skeptical to start taking Keppra for seizures-but what a blessing it has been for me.I was also in denial, and resisting the diagnosis.
The aura feeling- I hesitate to try to describe it myself-it's like becoming separated from reality with a feeling of forboding, paralyzing kind of, only you are still awake, but pulled into this void.
I differenciate it from the kind of detachment I feel with lyme-because with the lyme detachment I can still move around , I just feel separated from reality but still functioning.
With an aura I can't move, I am afraid to move, and I'm scared, but I can still see. It's just a bit more weird-as if lyme isn't weird enough.
Anyway I have improved on seizure meds. And when I am further along in my lyme treatment I may consider going off the seizure meds-if I have the nerve. Don't know- I am just three months into lyme treatment.
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
The hubby has had the whole range of seizures, from just the precursor feeling to spacing-out-for a-moment to full grand mal with thrashing and loss of awareness for several minutes. The seizures occurred over a period of about 5 years with increasing intensity. At one point he was having several a week, but mostly of the mild spacing-out-for-a-second-or-two variety. He found that if he noticed them early enough (the aura), stopped what he was doing, and concentrated on breathing he could stay concious.
His EEG never showed any abnormality; nor did MRIs.
He was always very weak and tired afterwards, even if they were mild.
They've been gone completely for the past 4 years. I think the babesia treatment played a big role in stopping them.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
geeez...sorry to hear this. prayer sent for safety.
if you and/or your doc. feel the synthroid is to blame, then armour thyroid might be a better alternative. the thyroid, and thyroid meds can be extremely tricky to deal with.
within the past two weeks a radio doc., a real M.D., expressed teh opinion that the "...adrenal glands..." might have to be adressed before, or along with, dealing with teh thyroid gland.
posted
Keep us posted. Hope that Dr S can find something to be of help to you to eliminate this symptom. I will keep you in my thoughts and prayers. Don't hesitate to send a pm if you need a hug.. Posts: 719 | From Delaware | Registered: Jan 2006
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hi Heather, long time no speak.
That really sucks. How long have you been getting seizures, and what meds are you on right now?
Hope you are feeling better.
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Wow. Thanks for the imput everyone!
From what I can remember and from my journal I think it's the first one this year. So seizures are alot less.
I fainted/ passed out when Bill was in the emergency room a couple months ago. I don't know if those were seizures becuase noone saw me.
When I have seizures I'm totally out. It's actually quite peaceful......... until I wake up in a cold sweat. HATE the loss of bladder control!!!!!!
So my LLMD said if I have another seizure then I'll go back to the LLMD Nuero. REALLY DON'T WANT TO!!!!!!
We just switched up my meds last month. Back to Biaxin xl 2x a day. Cedax 2x. Valtrex, diflucan, synthroid, acidophilus, physillium, and etc........
Dr. S seems to think herx becuase i had alot of my old symptoms before the seizure.
Now it's going to be zith 1x, cedax 2x. Never took zith before. We'll see.........
So I'm hoping to make it thru the rest of this year without a siezure.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Heather,
This is just my opinion, since I have only minor seizures (I fall down, but don't pass out). I would suggest getting on some seizure medication. You do not want this to happen while you are driving.
If you continue to have seizures you will not be allowed to drive. Just something to think about.
God Bless You. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 6442 | From Illinois | Registered: Aug 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Oh, Heather, I'm sorry, I just saw this now. That's really scary.
Since, I'm obviously too late to send good thoughts for the LLMD appointment... I'll concentrate my good thought and prayers to no more seizures.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I hope you are doing better..This must be very scary..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Agree with Hiker, Heather. There is a BIG sign in the neurologist's office saying that by law he has to report you to the dmv if you've had multiple seizures.
Is it possible the meds contributed to the seizure? Have you looked up side-effects? Or have you had the seizures before you started any of the medicines?
I'm not saying it's the meds.... just throwing things out there that you might want to investigate.
Take care and I hope you stay seizure-free. I've only had one and certainly would NOT want to have another.
Later,
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I'm going to ramp up really slow with the meds to make sure it's not the meds causing the seizures.
Dr. S thinks herx because I had alot of old symptoms before seizure. Seizures were an old symptom also.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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I am so sorry to hear that you are having these seizures. Zithromax has been a very good abx for my daughter with little or no side effects. Hope that you have the same response to it. It's great that you only have to take it 1x a day also. Let us know how you make out on this new combo.
On another note, a neighbor of mine whose sister was recentently diagnosed with MS is considering Lyme as a possible culprit. She lives in Toms River, so in a heavy tick endemic area. I remember a few months back when you answered a post in seeking Dr's about a LL Neuro. in Neptune. Can you pm me with that info. I am very concerned for this young mother.
Thank you!!
Posts: 263 | From Georgia | Registered: Feb 2006
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Makes me wonder if the same thing didn't happen to hubby several times in the past. I know there were at least 2 or 3 times I left him in bed and ran to the grocery store and came back 30 minutes or so later and found him passed out in the floor.
I thought he was trying to get up to go to the bathroom and was too weak to walk that far. It sure was a job to clean him up (he had lost bladder control as well) and get him back into bed while he remained unconscious. Can't remember, but this may have been while we were doing IV Rocephin -- his 1st antibioitc.
Anyway, read my post on the thread Achey posted about her seizures.
Hope you can figure out the cause as I know just how scarey these symptoms can be.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
I had seizures for three years, and you do need to be on a seizure medication until the antibiotics can eradicate more of the problem. Do you see a neurologist at all?
Bladder control loss is consistent with seizure activity. I used to experience auras during the day--smells that were not there. For example, I would smell gasoline or oranges in my bedroom, and this would be a clue that I would be heading into a seizure. My seizures came with falling asleep or waking.
I hope you can see a neurologist as well as your llmd, because you will need a med to help stem them.
They are frightening, but as you gain control, and can identify any symptoms that precede the seizure, sometimes you can head it off.
Posts: 1565 | From Hatfield, MA, USA | Registered: Mar 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Goodness, Heatherkiss. You got me all worried here. How about adding some Topomax? Stops headaches, anti-seizure properties, and a pleasant side effect of weight loss, all in one pill? You take it at bedtime.
I'm keeping you in my prayers...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
They (researchers) think Depakote for seizures works by keeping the sodium channels open...preventing the influx of calcium. Sodium is more "reactive" than calcium.
This is why strobe lights/fluorescent lights can trigger a seizure...has to do with interferring with the calcium channels.
Caution: Depakote can be really toxic to the liver. Watch ALT liver enzyme levels.
This IS what is happening in lyme...too much Na and too many hydrogens IN the cells = metabolic acidosis.
The Mg-Ca and Na-K pumps are kapoot.
This maybe due to too little ATP...the energy carrier.
Bb needs phosphorus to make ITS ATP.
It's taking ours.
ATP is one thing that will drive the Mg-ATP pump...Mg will only enter the cells to lock onto the matching # of ATP as Mg-ATP.
Lecithin (phosphorus + choline) might help...a lot. In more ways than one. Once a day is likely not enough.
Posts: 9402 | From Sunshine State | Registered: Mar 2001
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
So sorry to read about this, Heather!
Hope it's your last seizure forever.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Thanks everyone! So nice.... I'm all choked up!
This is the first time I had 4 pms waiting and it's been a long time since I had a popular post.
I really love you guys.
I'm sick in the head too. Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Heather,
I'm hoping your LLMD's strategy is successful in getting you past this.
I can only imagine how scary it must have been for you.
Hope you're doing better now and just wanted to let you know you're in my thoughts.
Andie
Posts: 2548 | From never never land | Registered: May 2005
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Ouch! Having a seizure in bed I thought would be safe. Well, I guess you live and learn!![[hi]](graemlins/hi.gif)
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