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Old 07-25-2010, 02:16 PM   #1
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mackleo HB User
Exclamation Seizures, Migraines, Brain Lesions, Lamictal, etc.

Joined the forum today to see if I could get a conversation going about the symptoms I've been dealing with for 9 years. I want to give a summary of my health over the past 9 years, and I hope you can join in and share any similar frustrations/experiences?

May 2001 - Grand Mal Seizure witnessed (no diagnosis)

July 2001-

Left eye stopped moving past the center to the left. Right side of body began to tingle from toe to head.
MRI Showed 5 lesions on brain, 2 near optic nerve. Went on a IV treatment of Steroids to reduce inflammation. Right side of body stopped tingling but there is slight nerve damage to right side - i.e. it gets colder faster than the left side.

MRI also revealed an Arachnoid Cyst that I was born with. They didn't seem to focus on that. They said I had M.S. although Spinal Tap didn't confirm

Dec 2001 - I had no other lesions appear, so they said that I just had "One Time Viral Infection" . ??

Jan 2003 - Grand Mal seizure after drifting off to sleep. Then I was put on anti-convulsion meds. Think I started with Topamax, then to Depakote, I think

Aug 2004 Moved to Fl from CA. Had a couple more grand mal seizures that year while they adjusted my meds. Trileptal was the new one..

Aug 2005 Had tingling hands, then was told it was the medicine Then lesions appeared on a routine MRI and i had another 3 week dose of Prednisone. That Neuro diagnosed me with MS and wanted to move on with the Medicine- injections at home?! So I called Neuro in CA and found a new Neuro in Tampa. The new Neuro ran ALL tests on me, including repeat Spinal Tap. He could NOT diagnose MS!! I was in SHOCK that I had a doctor in the same town that was ready to treat me with meds for MS??
Meds switched to Lamictal.

Jun 2006 Had a break through Petite Sz from being prescribed Cipro anti biotic. Pharmacist didn't catch that one. Lamictal dose was increased again.

Apr 2007 Had a Migraine, then went to sleep, then husband witnessed another Grand Mal sz So my lamictal was increased to 500 mg/day

Jun 2007 I reduced lamictal down to 400 mg/day due to a rash/breakout on my face. Read that it was a side effect.


Okay, so there are the highlights. I am glad to say that I haven't had a seizure since Apr 2007. But hate being on such a high dosage of Lamictal. I complain about my Memory Loss daily. I used to remember dates and times from years past, to the point that people made fun of how good my memory was. Now my friends surprise me all the time with stories from my past that I CANNOT recall. Even after they tell me. So sad and frustrating. Neuro referred me to some sort of brain doc that would determine where the memory loss is coming from but my insurance won't cover it??

My chief complaint these days and for the past couple of years is MIGRAINES. Maybe not always migraines, because I can function most of the time. Just Piercing Pain on Left Side of head, along the top of my head. So bad that they next day that area of my head is Tender to the touch. Yuck. Typically if I get a headache it lasts 6 to 20 hours, because typically I can sleep it off, especially if I take a Fiorcet that my Neuro prescribed.

One more note: My neuro thinks there might be a link between my menstral cycle and headaches and seizures. So I am on Yasmin BCP and take Valium at night during the 4th week of my cycle. However I have been skipping my 4th week of sugar pills and going right into a new pack, and I think the headaches frequency has decreased. But two nights ago I had an AWFUL one!

Alright- I hope some of you can relate to some of this because 99% of the time I talk about this to DR or Friends no one has ever heard of such.

Cheers to good health!!

 
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Old 07-25-2010, 02:47 PM   #2
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jinglebts HB Userjinglebts HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

I started taking JUST lamictal this summer (b/f that I'd been taking dilantin for ~8 years, then dil+ lamictal for5 years, then just lamictal for a year). I've always had migraines, but last summer right thru' to this summer they've b/come more severe and I've had more of them. Also, last year and worsening this year I have been exhausted. I'm so tired now I can hardly sit up to type. The heat's been getting to me this summer too.

Just as you say with the migraines and forgetfulness (I can't remember the last thing I said in a conversation). I wonder if anyone else has had this exhaustion while on lamictal.

Thanks mackleo for confirming some of the side effects I've been having. I just need some confirmation of the extreme exhaustion.


jinglebts
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Old 08-26-2010, 09:43 AM   #3
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YogiBear21 HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

I got seizures from Yasmin!!! It also caused a blood clot in my brain and serious memory loss ...I'm on Keppra for now.I hope they will take me off of it soon...I know that wasn't really your question,but since it happened to me I feel the urge to let people know about the dangers of taking Yasmin or Yaz!!! That alone can cause some or all of your problems...I would definitely mention it to my Neuro doc...Good luck with it all ...Hang in there!!!

 
Old 10-02-2010, 08:56 AM   #4
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tinabean34 HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

I get the weakness and fatigue on the dilantin. I just started with the siezures and I think it is due to the brain surgery I had last year, I had a tumor removed. Never had a siezure before that. Now I am scared they are going to come any time. At first I didn't leave my house for weeks. I have wierd headaches but don't know what to contribute that to the meds or the surgery. They said I have post-surgical growth. What? Anywway they have told me numerous times you "might" have MS that could account for the siezures too, my spinal tap was also negative, nice to go through for nothing. I don't know, and I know you dont either all I know is that this sucks, beyond that I have chronic pain, IC, spinal stenosis, I feel like I am 60 and I am 36. I hope and pray things get better for all of us. I have been like a nut lately crazy, does dilantin cause that?

 
Old 10-02-2010, 11:29 AM   #5
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Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

Mackleo: I'm going to tell you the same thing I tell every other woman on these boards. Go see an endocrinologist or even better, a neuro-endocrinologist if you can find one in your area. Alot of these problems are caused by hormones. Get your hormones tested and see if you're estrogen dominant. We live in a toxic world and it's messing with our bodies. Read Dr. John Lee's books "What your doctor won't tell you about premenopause" and there's one on menopause too.

These seizures can start at either puberty or menopause. Look up Catamenial Epilepsy. See if you've got any of the triggers they talk about. MSG, lack of sleep, stress, plastics, fluorescent lights, EMF's, the full moon!!!!! Yes, that's right.

Look up xenoestrogens and phytoestrogens. You'll be amazed at what you read. I've become so chemical sensitive it's not funny anymore. I can't be around perfume, cigarettes, gasoline, exhaust fumes from cars, lawn mowers, etc., wood smoke, cleaning chemicals, and more. They are all xenoestrogens. They add to the estrogens in us. Estrogen is one of the major contributors of cancer.

I was put on Lupron injections to see if I can get the estrogen levels down along with taking progesterone. Lupron is used in men for prostate cancer and in women to treat endometriosis. It helps lower estrogen levels.

Another thing that adds estrogen to us is red meat - all the hormones in the beef are increasing the levels. Soy is another thing - it's phytoestrogen. I can't eat it. I can't eat tuna fish anymore. It's got soybean oil in it now. Even mayonnaise is being made with soybean oil now. It's fine if you're in need of estrogen but when you're not these things are like poison.

MSG is in everything too. I can't eat Chinese food, hot dogs, canned soups, crackers, shake & bake, and anything that has "added flavoring". It's MSG!!!!!

Right now I'm on Keppra and Phenobarbital. They don't control the seizures 100% because it's hormonal. The migraines go right in line with the seizures. That's why they prescribe seizure meds for migraines.

See if you can get your neurotransmitters tested and get a toxic and non-toxic element test done. I found out that I was low in magnesium, selenium and taurine from these tests. I also take Vit B6, B12, D and Melatonin. The Melatonin helps me get to sleep these days. Melatonin reduction later in life is responsible for the insomnia women get at menopause. It's a hormone secreted by the pineal gland.

I had cousins that either had seizures or migraines and the one with the migraines said once she went through menopause they stopped. I've never had a hot flash. I only get these seizures. Your hormones control your brain more than you might know.

All these meds have decreased my libido too.

I hope I've given you somewhere to start to look for some answers. Neurologists aren't going to do the hormone testing because they're taught to give meds and not look outside the box. Another thing to possibly consider is accupuncture. Good luck and take care and stay safe.

 
Old 10-12-2010, 12:48 PM   #6
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Rebecca Brobst HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

Man Im glad that someone thinks there might be a connection between the period and headaches, when I get a bad one, I take the ibuprophen, cause I cant take the other stuff due to the meds Im taking. Plus Ive found out that taking a pill of Magnesium helps to curb the migrains too. maybe you might want to try that

 
Old 10-15-2010, 09:59 AM   #7
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jinglebts HB Userjinglebts HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

Oh good thought. I'll try that.
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Old 10-15-2010, 10:09 AM   #8
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Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

"Okay, so there are the highlights. I am glad to say that I haven't had a seizure since Apr 2007. But hate being on such a high dosage of Lamictal. I complain about my Memory Loss daily. I used to remember dates and times from years past, to the point that people made fun of how good my memory was. Now my friends surprise me all the time with stories from my past that I CANNOT recall. Even after they tell me. So sad and frustrating. Neuro referred me to some sort of brain doc that would determine where the memory loss is coming from but my insurance won't cover it??"

How much Lamictal are you taking? I'm taking 200 milligrams. I'm pretty sure thhe memory loss is from the Lamictal. Iknow that I experience it.

At first, I was dx'd with MS too. But I had another symptom and that dx was disregarded. Plus Idid not have enuff white matter in my brain scan.

jb
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Old 10-20-2010, 08:40 AM   #9
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tylersmom HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

Hello Jinglebets- I m 54 y/o fem new to forum, read an older post of yours re: Synthroid, migranes and seizures. I suffered these symptoms and more to a point of being bedridden for years while on Synthroid. I had a thyroid cancer and a thyroidectomy in 1991 +/- and a few years later went back on Armor Thyroid with a side of Cytomel and like magic most symptoms went away. My migranes were 3 day vomiting events with seizures; had the spinal taps, the MRI's CTs etc. but nothing helped me more than getting on Armor thyroid. Many people have issues with it, and same applies to Synthroid, but after years of back forth I feel I have finally found my formula, and I am very relieved.
Now if only the manufacturer would quit messing around with the compounding of the medication....
Stay well! And best wishes!

 
Old 10-20-2010, 02:08 PM   #10
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jinglebts HB Userjinglebts HB User
Smile Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

Hey there!
I'm now on dessicated thyroid (the same as your Armour), which no one, even my endo, seems to know anything about -- only my naturopath. But unfortunately, my naturopath can no longer prescribe it! So I take it according to my n'path's instructions, prescribed by my GP (how dumb is that). I really like it -- doesn't have any of the side effects of synthroid.

I do have a seizure disorder tho', b/c I had a stroke about 12 years ago and the dead tissue eventually caused seizures. So I think all the side effects come from the drug I take for them,called lamictal.

Glad you finally found your solution ... must have been a bit of a nightmare. My my, thyroid cancer -- a have a friend who had it and the treatment is fairly awful (all the hypo symptoms and then some).

Do you remember Bonnie Lea -- she used to post on the thyroid board? Well, she had three episodes of melanoma, and then she went to have a breast reduction and they found CA in both of them, completely unrelated to the melanoma. Can you believe it? It's all been in the past 6+/- years. Good grief.

You stay well too, and and all good wishes!
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Old 10-22-2010, 03:24 AM   #11
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kazza1960 HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

this is so true of doctors. They only look at it from the perspective of treating the symptoms but not really addressing the causes. There is possibly a hormonal link but I have hrd vitamin E helps with epilepsy. This can be found in avocado's, wheatgerm etc.

 
Old 10-22-2010, 06:18 AM   #12
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jinglebts HB Userjinglebts HB User
Re: Seizures, Migraines, Brain Lesions, Lamictal, etc.

Vit. E? I'll try it. thanks
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