Topic: please help me understand seizure/seizure meds
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I have no background in this
I have long history of neuro lyme sx but many neg tests for lyme...both elisas and igenex wb
A few yrs ago i was prescribed neurontin for occasional bouts of tri geminal neuralgia. I know it is an anti seizure drug and i dont understand how it. Works
Within the year a neurol told me to also take it for nerve pain all over body. I have this daily. He said it is important o take neurontin everyday-not just when pain is bad. (I had been taking it only when pain is bad
He told me to take 300mg morning and 600 mg every night
This is all for nerve pain and tri gem...i have never had a seizure
Two days ago i had tri gem attack that neurontin couldnt control and i ended up in er. They said i needed stronger seizure drug every day. I think it is tegradol
But i have never had a seizure. I dont have llmd now. Is this safe? Why am i getting anti seuzure med for nerve pain? Thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
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This site (rxlist.com) does mention nerve pain>
Tegretol (carbamazepine) is used to treat seizures and nerve pain such as trigeminal neuralgia and diabetic neuropathy. It is also used to treat bipolar disorder. Tegretol is an anticonvulsant. This medication is available in generic form. Common side effects include nausea, vomiting, dizziness, drowsiness, or unsteadiness as your body adjusts to this medication.
The starting dose of Tegretol to treat epilepsy in adults and children over 12 years of age is 200 mg twice daily for tablets and XR tablets, or 1 tsp 4 times daily for suspension (400 mg/day). Usual maintenance dose is 800-1200 mg daily. The starting dose to treat trigeminal neuralgia is 100 mg twice daily for tablets or XR tablets, or ½ tsp 4 times daily for suspension, for a total daily dose of 200 mg.
Control of pain is maintained in most patients with 400-800 mg daily. Consult your doctor for pediatric doses. Many other medicines interact with Tegretol. Tell your doctor all prescription and over-the-counter medications and supplements you use.
During pregnancy, Tegretol should be used only when prescribed. It may harm a fetus. Since untreated seizures are a serious condition that can harm a pregnant woman and her baby, do not stop taking this medication unless directed by your doctor. If you are pregnant, prenatal care including tests for defects is recommended.
Hormonal birth control may not work if taken with this medication. Discuss birth control with your doctor. This medication passes into breast milk. Consult your doctor before breast-feeding.
Our Tegretol (carbamazepine) Side Effects Drug Center provides a comprehensive view of available drug information on the potential side effects when taking this medication.
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Report any new or worsening symptoms to your doctor, such as: sudden mood or behavior changes, depression, anxiety, insomnia, or if you feel agitated, hostile, restless, irritable, or have thoughts about suicide or hurting yourself.
Call your doctor at once if you have:
fever, tired feeling, weakness, confusion, pale skin, feeling light-headed or short of breath; easy bruising, unusual bleeding (nose, mouth, vagina, or rectum), purple or red pinpoint spots under your skin;
slow, fast, or pounding heartbeats; confusion, vision problems, hallucinations; nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); little or no urinating;
swelling, rapid weight gain; problems with your fingernails or toenails; or severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling. Common side effects may include:
dizziness, drowsiness, nausea, vomiting, feeling unsteady; dry mouth, swollen tongue; or loss of balance or coordination.
posted
Kayak.. I THINK the history on these meds is that they designed them to control seizures and found out by accident that they helped nerve pain.
Take it if you are able! You need the pain relief.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
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posted
Ty
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
Wait. I told e r doc i took up to 900mg neurontin for pain of tri geminal neuralgia. I thought i had ear infection and that was why neurontin wasnt working. But it was determined there was nothing wrong with my ear so severe pain in left eye and ear and cheekbone were tri gem
I also had numbness on left side of face.
Doc said i needed stronger med for tri gem and gave me 400mg a day tegratol. 200 a.m. 200 p.m.
Im sorry if i gave confusing info
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by Keebler: So steady may be good advice to "stay ahead" of pain.
- Exactly what I was getting at.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Good point you made. Just trying to say it another way, I guess, for emphasis. I have trouble saying things as my brain wishes.
But, what seemed like he was confused is that he said "seizure" drug as if that was the reason for taking them.
But, I see it in a different light now. BECAUSE seizure drugs work like they do, they must be steady regardless of the reason taking them.
And, I know I can't say this correctly and it's just a thought but I wonder if sudden or severe pain might somehow be a kind of seizure, too. With the neurons go wild they just do it in a different way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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posted
-both neurontin and teg are seuzure drugs. The teg being stronger. But if you read what steve posted above the teg is also for tri gem
I understand my reflux drug works by lowering stomach acid
My question here was to understand how these antiseizure drugs work
Im exhausted. Im not good with words lately
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
I found the answer to my question on web md. They know some anticovulsive drygs decrease nerve pain but they dont know why
So the "why...how" is my question but there may not be an answer. Does anyone know why...how
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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Member # 5230
posted
The two drugs we are talking about are the two most commonly used for tri gem neuralgia
The tegratol works better than the neurontin
They are also used a lot for fibromyalgia and diabetic nerve pain
You can.become dependent on them and need to ramp down slowly when you go off them
The first doc that prescribed neurontin for me told me to use as needed and that was wrong. The doctors i have now are agreeing with web md
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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You can.become dependent on them and need to ramp down slowly when you go off them
The first doc that prescribed neurontin for me told me to use as needed and that was wrong. The doctors i have now are agreeing with web md
- You got it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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steve1906
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posted
They mention both drugs in this report. Not sure if it answer's your question but, lots of information here
Do a search on this tile below - It's a PDF>
Anticonvulsants compared -- Consumer Reports Best Buy Drugs
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Keebler
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posted
- They dull neuron firing. That's how they work. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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posted
And neuron firing is what causes tri gem neuralgia and seizures?
Thankskeeb, tutu and steve
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
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posted
- Q: "And neuron firing is what causes tri gem neuralgia and seizures?" (end quote)
Not the cause, but the effect, the results.
"Effects" or "Results" simply put: over-firing of neurons in a "storm" of either pain or spasms - and this can be a very wide spectrum -- due to irritated, agitated or compromised nerve fibers.
The causes can be various / multiple. It's not addressing the cause but the effect.
Sometimes the cause(s) are not known, or readily identifiable. So, dulling the results of an unknown cause are the best that can be done.
Sometimes, dulling the results WHILE searching for / addressing / treating the cause is important. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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posted
Ty keeb
Are we more vulnerable to tri gem , bells, seizures cuz we have lyme?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
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posted
- Yes. For many reasons. And each one can be layered upon another. Just some influences in both pain and "seizure spectrum" are:
toxicity of infection, damage to nerve fibers & myelin sheath (and whatever else gets in the way), liver stress, adrenal dysfunction, magnesium deficiency,
inflammation (goes with infection yet also for various reasons, including food or chemical or mold exposure issues) . . . .
While this set below is more about the far end of the spectrum and is not directly about pain management, the kinds of things here can also be of help. The detail on excitatory processes, etc.
Topic: Best way to control limbic seizures / overactivity?
Many LINKS - things to avoid and what can HELP -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- If there are structural issues with either bone, tendon, ligament or soft tissue constriction, often FELDENKRAIS method or UPLEDGER technique can bring relief. These are safe methods for those with lyme.
But no sudden cracking, twisting, jerking of the spine / neck. This can be very dangerous for those with neuroborreliosis.
MASSAGE can be absolutely excellent, too. But it's more the on-going process of working the tissue over time that can have the best results.
With massage, the benefits are not just about the manipulation of body tissue or working out of waste from tissue. A great deal is going on with the brain, heart & adrenals that will be of benefit for days.
Massage is a fabulous tool for pain management - but not so much as we might think. Not necessary, push this place and "poof" relief. It can be a cumulative process.
MUSIC THERAPY, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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Keeb ty so much for making it easy for me to understand
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
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posted
- Well, I hope that's what I've done, in some way, but it's very complex and differs widely for each person.
Realize, too, that I come at this topic from my own experiences & perspectives gathered from lots of literal tumbles along these rough & rocky roads. And I have a far different opinion of anticonvulsant drugs than most. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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posted
Ok
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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WPinVA
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posted
Kayak, There is a lot that NO ONE understands about how anti-seizure meds work.
My son has a seizure disorder and the mechanism by which his particular anti-seizure medication works is not actually understood. Not just by me - I mean it is not understood by the medical community.
Believe me, I had to swallow hard to put my son on a medication that alters brain chemistry via a mechanism not yet understood.
The protocol seems to be to find one that works to control the seizures, whether or not the mechanism by which that occurs is fully understood. I realize that you're not dealing with seizures per se, but since the meds are the same, that may apply in your situation as well.
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lpkayak
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Ty. Its been 7 days since my trigem pain started. I have never had it this long. I rwally hated the way the tegretol made me feel...very drunk. On one 200 mg
So now i amtrying double dose of neurontin and i am really upsetthat i am having break thru pain. Im suppised to take 600mg every 8 hrs and so far i only get about 3-4 hours of relief in the middle of the 8 hrs
In the past i only had tri gem once or twice a year and when i had it i went to bed wit 600mg and the next day i was fine
For a yr-since my last leg surgery i have been taking the neurintin every day instead of onky wgen i have an attack and it seems taking so much if it is making it not work for me
I can see i am going to have to keep researching this...im also finally going to begin tx for lyme complex again...and maybe that will help
Ive been dealing with lyme over 30 yrs now and so its really going deep with neuro i guess
Wp-thank you for writing. Im so sorry your little one is having to deal with this
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
I plan to up fish oil to 2000 3 times a day til this pain is under control
Something wierd hppened tody. I was not having break thru pain but was dizzy and slow thinking. It was time to take second neurontin, curcumine and fish oil at 3. Helper was here and i couldnt stop. Then forgot. At five i still had no pain but was very dizzy, floaty, disorientated.
I was confused about if i sgould take pills or if i was going thru some sort of withdrawal. I still have no pain. I ate. Its 7. I know i am supposed to take them to follow my plan...for some reason i dont want to take them when i feel so spacey AND i have no head pain
Anyway-we got a lot done. House is looking good. Friend wants me to have holiday open house! We'll see
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
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posted
Good lyme treatment got rid of my trigeminal neuralgia.
Also, Benedryl gave me great relief from it. Give it a try if you can take Benedryl. I think it must reduce the swelling of the sinuses where the facial nerve comes near it and that must be how it works. By reducing the swelling, the sinus is not pressing on the facial nerve and causing it to fire.
That is my guess.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
OH... earlier you said 12 hours. That would not be often enough for sure.
Right .. likely not the cortef.. I'd love to be off of it myself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
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posted
Yeah. It was 12 hrs yesterday. The docs keep changing their stuff and i keep changing mine
I made it to bed time with no pain and no neurontin for 18 hrs iguess hope i dont regret it. Maybe im over the hump. Nite
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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But...i m up now after crazy nightmare. And i checked online and realized it is a side effect. Ive been reading online about neurontin and i dont think i want to take this. I dont want to take it everyday wh err n i ony get the pain a few times a year. There are a lot of side effects and interactions. Docs dont have a clue
Imgonna try to sleep sitting in chair. I am exhausted but scred that stupid dream will come back.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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I got some sleep-not all at once but im gonna wean off neurontin. This is too heavy duty for everyday. And in a few yrs it doesnt work anymore
I took one 300 this morning. Ill do that a few days. Then every other day. Hopefully off in a week
Im upping curcumin and fish oil, trying to stop nerve pain where it starts and finding herbals and supps that help nerve pain
Thanks for everyones help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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