I had another seizure. I woke up sick and in pain on saturday.
Bill said I was moaning. I asked him to get me the bathroom trash can so I could puke.
He said as soon as he left me there was a loud crash.
Can you believe I fell out of bed and landed on my face! Ouch! Having a seizure in bed I thought would be safe. Well, I guess you live and learn!
He said he ran back in and I was out cold. He flipped me over to make sure I was breathing.
I lost bladder control.
I'm off of all pills except for synthroid. I've been feeling strange. Hard to describe. Not the usual for me.
I've been feeling sick for a few days. Damn!
Bill and I are going to Dr. S tommorrow. I guess I have alot to talk about w/ him.
Of course I'll report back to all of you. Posted by Nal (Member # 6801) on :
OMG, thats so scarey! I am so glad that you are ok though!
Do you get these seizures often?? Wow, I hope your dr is able to give you some answers.
Nancy
Posted by cantgiveupyet (Member # 8165) on :
Oh Heather, im sorry. Im so glad that you are OK and glad your husband was there with you.
Is there something in the air im seeing a few of us havent been feeling right.
I swear i was dying yesterday...it really felt like it.
good luck tomorrow.....and let me know how it goes ok.
Posted by trails (Member # 1620) on :
oh HEATHER!!!!
Please let us know what the doc says. I am worried about you.
What were you on meds wise? What is synthroid for?
Hang in there, Thinking of you! Trails
Posted by Lymied (Member # 6704) on :
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...
Posted by Carol B (Member # 9110) on :
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.
Good luck at your appointment. Carol
Posted by minoucat (Member # 5175) on :
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.
Posted by pq (Member # 6886) on :
Hi Heather,
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.
good luck
Posted by 5dana8 (Member # 7935) on :
hey heatherkiss
I'll keep you in my prayers and hope your doctors appointment goes well tommorow. Sorry this had to happen. Let us know how things go.
hang in there Posted by Lymetoo (Member # 743) on :
Oh dang!! I hope you find the answer soon! Sounds like you need some seizure meds. Keep us posted, OK??? Hope you're feeling better today. Posted by iceskater (Member # 8655) on :
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.. Posted by johnnyb (Member # 7645) on :
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
Posted by HEATHERKISS (Member # 6789) on :
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.
Posted by hiker53 (Member # 6046) on :
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
Posted by trueblue (Member # 7348) on :
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.
Posted by lymemomtooo (Member # 5396) on :
I hope you are doing better..This must be very scary..lymemomtooo
Posted by johnnyb (Member # 7645) on :
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
Posted by HEATHERKISS (Member # 6789) on :
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.
Posted by lymedesign (Member # 8791) on :
Hi Heather,
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!!
Posted by seibertneurolyme (Member # 6416) on :
Heather,
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
Posted by ArtistDi (Member # 2297) on :
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.
Posted by Michelle M (Member # 7200) on :
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
Posted by Marnie (Member # 773) on :
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.
Posted by Monica (Member # 224) on :
So sorry to read about this, Heather!
Hope it's your last seizure forever.
Posted by HEATHERKISS (Member # 6789) on :
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. Posted by Andie333 (Member # 7370) on :
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.
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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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I really love you guys.
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