SentByHim
Frequent Contributor (1K+ posts)
Member # 3998
posted
I take Topomax with NO side effects. Just know that it stays in the body only 12 hours so it requires a 2x dose. Once that faux pas was figured out my seizures stopped and life as far as that is concerned, has been grand.
One "side effect" that CAN happen is some people lose weight, of all the side effects that I have had from different meds why I couldn't manifest this one? who knows.
But just yesterday I had a REAL BAD herx day and felt a seizure coming on, a bad one at that but it never manifested beyond just my hands shaking and stomach twitching.
I called my neurologist he said my brain was probally trying to have a major seizure but the topomax stopped it from manifesting beyond what I had. Good thing too I was driving at the time when it started.
Anyhow that is my two cents
Sent
Posts: 1574 | From Port St Lucie, Florida, USA | Registered: May 2003
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thanks, Sent, What dosage of topomax do you take? Did you have to ease onto the dose you take now? I hadn't heard of that one.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
when mine were bad from bartonella before I was treated I was on 50mg of topamax in the a.m and 50 mg of topamax at bed. also took .5mg of clonazapam at bedtime for seizures too...they calmed my brain down according to my neurologist....
now that I've been treated for the bart. I only need the topamax..and doing fine on it..will slowly taper off it too this summmer probably adn see how i do. havent' had a seizure since November..since starting these meds..but mine were mostly minor..with just the brain twitching/shaking and panicky feeling..never full blown seizures etc..from what I understand these are pretty typical of bart type seizures....
hope this helps, Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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SentByHim
Frequent Contributor (1K+ posts)
Member # 3998
posted
my dosage is 200mg AM and 200mg PM that is "a standard dose for seizures" according to what my neuro said just yesterday. With lyme and some other disorders lower doses may be given. I was started on 50mg for a sleeping disorder before the seizures started and because I tolerated it so well I started taking a higher dose to control the seizures.
That was the "faux pas" that I was refering to. My PCP didn't know that the doses had to be 2x a day because it only stays in the body for 12 hours so he kept upping my dose before bedtime and wondering why I was still seizing every afternoon. This led him to think I was having a psychological problem then another MORON neuro added dilantian and kept the topomax as it was this totally wiped me out. Imagine what was happening to my brain taking 500mg of dilantian and 500mg of topomax. I was basically a drulling mess.
I finally got the apt with my current neuro and he immediately noticed the mistake, cancled the dilantian and spread out the topomax. My pcp told me he was sorry, and should not have taken the duck neuro at his word. The fact that the mis-dosing was not curing the seizures and then fixing it did stop them proved to him I was not having psychological problems but real seizures because there was no way I could have known about the dosing problem because if I did I would have told him.
Gotta watch the docs sometimes....
Sent
Posts: 1574 | From Port St Lucie, Florida, USA | Registered: May 2003
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
sent ,
have you been treated for bartonella? once I was my seizures went away...was lyme/bart related. Or have you had them your whole life?
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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SentByHim
Frequent Contributor (1K+ posts)
Member # 3998
posted
NEver been treated for Bart. But the seizures go away with lyme treatment. They only come back when I herx real bad, like yesterday, or when I relapsed.
What is the treatment for bart??
Presently I am on Flagyl and Zith this is following four months of IV rocephin. The recephin stopped all the sx then the orals started a major herx. 500 3x of flagyl is a lot from what I understand and 250 of zith is not too much but it is a potent combo. So the strong herxes are not too unexpected.
Every sx that has manifested has lasted for about three days or so, come on strong, then went by-by. So I am beliving the seizures will do the same, I had another one try to sneak through this morning but it was less than the other day.
Sent
PS just read this:
Bartonella Explanation: Bartonella spp. bacterium Symptoms: Fever, chills, headache and severe pain in the tibia, weight loss, sore throat, papular or angiomatous rash Treatment: Erythromycin, plus a Fluoroquinolone or Rifampin
I have no "fever, chills, headache, pain in tibia, weight loss (actually gained near 100lbs since getting sick) sore throat, or rash" probally why my LLMD ruled out Bart.
I remember a LONG list of sx he asked me about during my first visit and I think these were on it.
[This message has been edited by SentByHim (edited 01 May 2004).]
Posts: 1574 | From Port St Lucie, Florida, USA | Registered: May 2003
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
seizures are a very typical symtom of bartonella...not real common with lyme itself they're finding...if you have them when you herx...maybe that's when your bart is coming out...
there are many combos of meds for bart....
rifampin and a macrolide like zithro or biaxin xl
septra ds and a macrolide
levoquin and a macrolide or doxy
doxy and rifampin
I think those are the main ones..I could have forgotten one...usually it's a combo of the meds that stops the bart..it's a bugger to get rid of ..get it , bugger!lol...
anyway, just a thought....if it is the bart, you may be able to get rid of the seizures all together..I was only gettign them when i herxed also...that was typical of bartonella..and when i started the bart med..i really got them the first month when i herxed ont eh bart meds!, but after that...\GONE!
I was on septra ds/biaxin xl adn plaquenl adn then pulsed in levoquin 10 days a month mid month,(stopped the septra during that time), then restartd the septra again at the end of the levoquin. Did this for 6 months...seems like i got it. NO more burning skin, or funny foggy head, or headaches behind my eyes, or hurting eyes, or of course the seizures...
best, Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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aaronkatie
Unregistered
posted
Ann, I take all of the above, lol.
I take Topamax but that was always for neuropathic pain and I won't go off of it! I take 1 25 mg lamictal at bedtime - was supposed to increase, long story but i didn't.
I take 2 mg of klonopin at bedtime for periodic limb movement disorder - and now 400 mg of dilantin at bedtime for seizures (lasts 24 hours).
Since I added the dilantin I don't think i've had any bad seizures - maybe small ones while herxing or stress.
posted
Ann: I have been taking Primidone for the past 2 yrs for mild tremors. The drs won't say they are actually seizures b/c the EEG doesn't show any. I get a trembling in my rt arm that goes thru my body if I don't take the Primidone every 4 hrs. This has helped me tremendously. any questions contact me I haven't been on in a while so I don't know any one here anymore but saw this post and thought I could help. good luck, lynne t
Posts: 215 | From PA | Registered: Feb 2003
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posted
I am currently on 900mg of trileptal.....300mg AM / 600mg PM.
Supposedly I am in remission after a 2 month ABX treatment of Doxy, 1 month or Doryx (same thing but brand name) and then followed by 1 months of Riphampin. Dr.E told me I should have no more seizures anymore after such treatment, especially after the neuro specific riphampin.....But try telling that to both of my Neuros! They want me to stay on my tripleptal for the next 5 yrs Oh well, I guess I will have to be alcohol free for that time! BTW I have only had 3 seizures over the past 7 yrs...MRI, CAT Scan, blood work, EEG all clear....neuros are still scratching their heads.
Posts: 27 | From Central NJ | Registered: Jan 2004
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