It just keeps piling on (me)

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epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/11/2005 1:32 PM (GMT -7)   
Hi guys again,

I got woken up by my Doc's office and they said that for the 3rd time in a row my TSH was through room and my T3 and T4 were as low as it can get without going through the floor.

Diagnoses: Hypothyroidism.

Cause: high doses of AEDs (drug-induced)

Treatment: taking Synthroid to try to get a normal level of it.

This will be more of a s truggle, I think than the seizures. Now I have MORE meds to add to the rest, and this one has to be especially watched, because it can aggravate seizures in people with active epilepsy.

Why does all the crap happen when my mom is out of town? It isn't like this normally, except for my seizures that occur at random will.

Makes me wonder what's next.

Nancy



mad confused confused eyes
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/11/2005 8:31 PM (GMT -7)   
Nancy,
You sure have been through enough. Sometimes mom's have to be else where when we need them. We are here to listen and care. We may not be your mom but we really do care. Mary

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/12/2005 11:53 AM (GMT -7)   
((Nancy)) I am so sorry you have yet another med and thing to deal with now! I think this usually responds to meds pretty well, so I sure hope that happens for you!!

Jen has a great point. Having mom away may be adding to your stress. I also wonder if the thyroid not working right could cause more seizures to occur? Hoping everything calms down as you get this new med.....



(I used to tell people I clank when I walk with so many pills rattling around inside.....)


Hang in there! YOU can beat this, you have fought back from so much!

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/12/2005 12:24 PM (GMT -7)   
Ginny and JEn,

I know that mom being gone causes more stress on me.

IT shouldn't, but it does.

WE had different people from the church lined up two weeks in advance to help me, you know give me a call, pop in for a while and then stay at night. We had takers, but at the last minute, they bailed out.

They are so paranoid of this seizure stuff, they are stupid abou it.

They don't want to come to stay with me at night, because: What if I have a seizure, they won't know what to do for it, they told me they would panic, etc. There is no need for that, when I have stuff from the EFA all over the house on TC first aid.

They are manking more of this than necessary. My doc knows I get wound up tight when my mom leaves, which is why he said in Novemember no staying ALONE.

The people don't realize that by them staying here with me, it makes me relax, and calm down, and the chances of me seizing are less than they would be had I been alone. But they get dumb.

The AEDs are causing the low thyroid, and I am sure it is part of the problem, because it is a hormone.

Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/17/2005 4:38 PM (GMT -7)   
Nancy I hope you are doing ok. Just checking.Have some faith in your self. Try to relax.People are just ignorent when it comes to seizures. They get very frightened I quess. That is what I have found. It is frustrating and it hurts but that is just how it is. You take care. Mary

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/18/2005 1:35 PM (GMT -7)   
My mom was able to leave a day early and got her flight changed, so she will be coming on Thursday night at 11 30 pm, so that relieves it some.

Now, I caught some bronchial crud from someone, or my Asthma is acting up.

I have no voice, I can't talk at all, even my coughs are coming out in a squeakish sound. Last night, I couldn't cough at all, and that really got annoying.

I can't take OTC cough things, because my seizures react to that stuff, so I have to lie there and cough all night.

I have had two nights in a row that were broken up so they became sleep-deprived. I haven't had a seizure since that Grand Mal almost 2 weeks ago. But, that means absolutely nothing with my epilepsy, because have 6 types of seizures.

I have some Vicodin for another problem, that I took at bedtime, because the common ingredient Hydrocodone Bitartrate is also the main ingredient in RX cough scrips, and it made it so it wasn't as severe. It acts on the cough center in the brain to supress the reflex. Codeine is the other one.

My throat hurts from my pharynx all the way down my trachea to both sides of where it branches.

Hurts to swallow, or eat anything other than soft stuff.

Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/18/2005 3:55 PM (GMT -7)   
I am so sorry Nancy! RUn a Humidifier that helps a little! I am heading out tonight to get some VICKS or that plug in one with vaporizor vapors....My daughter is really sick too.

jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 1/19/2005 5:33 AM (GMT -7)   
Hi Nancy,

I am sorry you are having such a hard time. It has to get better.
Where do you live? With a name like cajun, I am guessing it may be near me.

I am looking for a new neuro and was wondering where you lived and who you see?

Nikki

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 664
   Posted 1/19/2005 10:28 PM (GMT -7)   
Hi Nancy,
I feel sorry for all the crap you've been going through lately.
It's really too bad that people are so uneducated in this area. We have to continue our push for awareness.
It really sucks that you can't take any OTC medications for your cold and broncial condition, they could do you more harm.(as you mentioned)
I know it's an easy thing to say but try to keep the stress down. (it sounds to me like you have a great relationship with your mom)
 
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


mjhampstead
New Member


Date Joined Jan 2005
Total Posts : 6
   Posted 1/21/2005 2:06 AM (GMT -7)   
epileptic_Cajun said...
My mom was able to leave a day early and got her flight changed, so she will be coming on Thursday night at 11 30 pm, so that relieves it some.

Now, I caught some bronchial crud from someone, or my Asthma is acting up.

I have no voice, I can't talk at all, even my coughs are coming out in a squeakish sound. Last night, I couldn't cough at all, and that really got annoying.

I can't take OTC cough things, because my seizures react to that stuff, so I have to lie there and cough all night.

I have had two nights in a row that were broken up so they became sleep-deprived. I haven't had a seizure since that Grand Mal almost 2 weeks ago. But, that means absolutely nothing with my epilepsy, because have 6 types of seizures.

I have some Vicodin for another problem, that I took at bedtime, because the common ingredient Hydrocodone Bitartrate is also the main ingredient in RX cough scrips, and it made it so it wasn't as severe. It acts on the cough center in the brain to supress the reflex. Codeine is the other one.

My throat hurts from my pharynx all the way down my trachea to both sides of where it branches.

Hurts to swallow, or eat anything other than soft stuff.

Nancy

Nancy
Sorry to learn you are hurting so much.
I make oregano tea with honey for my son both to prevent and to ease the bronchial symptoms.  Taking cod liver oil and extra vitamin C every day through the winter and getting some sun and exercise also helps to support the immune system.
Feel better soon.
 
CHarlie's Mom

mjhampstead
New Member


Date Joined Jan 2005
Total Posts : 6
   Posted 1/21/2005 2:09 AM (GMT -7)   
epileptic_Cajun said...
Hi guys again,

I got woken up by my Doc's office and they said that for the 3rd time in a row my TSH was through room and my T3 and T4 were as low as it can get without going through the floor.

Diagnoses: Hypothyroidism.

Cause: high doses of AEDs (drug-induced)

Treatment: taking Synthroid to try to get a normal level of it.

This will be more of a s truggle, I think than the seizures. Now I have MORE meds to add to the rest, and this one has to be especially watched, because it can aggravate seizures in people with active epilepsy.

Why does all the crap happen when my mom is out of town? It isn't like this normally, except for my seizures that occur at random will.

Makes me wonder what's next.

Nancy



mad confused confused eyes

Nancy
 
Why Synthroid?  It too can be problematic.  I prefer and do well on Armour thyroid.  Maybe do some research on Synthroid and give it to your doctor.
 
CHarlie's Mom

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/22/2005 3:12 PM (GMT -7)   
I am on state insurace and it doesn't pay for stuff like Amour thyroid drugs.

IT has not caused any problems for me, and the pharmacist, that everyone is different, and jsut because my drug book says use with caution in people wit hknown seizures doesn't mean it will actually cause me a problem.

Allthose herbs you put in that tea of yours, are on the list of no-nos for people with seizures. They lower the seizure threshold and weaken the effects of the AEDs causing break-through seizures.

I can't walk real well right niow, I am still in teh process of coming off crutches after--dating back to last summer 2 broken ankles, one surgery, and then foot surgery last Jan for Plantar fascitis, and then being forced to walk 1 month early when iwas in the EMU, then I was walking around for a while, and then reinjured it, so now, we are on the crutches again, so excerizing right now, is not an option. In April, I will be able to by swimming in my pool.

I live in my pool during the summer.

I live where it has an average summer temp of 110-115 or higher.

Phoenix.

Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


mjhampstead
New Member


Date Joined Jan 2005
Total Posts : 6
   Posted 1/23/2005 4:26 PM (GMT -7)   
Nancy

My son benefits from the herbs that he gets. They have helped to reduced the number of seizures he experiences as well as lowering the drug doses since 1993 when we started him on Milk thistle to improve liver function significantly damaged by Depakote.

The only herb folks with seizures should avoid is sage....

We are just back from the hospital for CT scans. I gave Charlie oregano tea just before we got there to protect him from folks with bad colds, coughs and flue, etc. He does not need to catch stuff if we can avoid it. He has not had a cold or the flu for years. Cod liver oil and vitamin C are not herbs. Many people of AEDs need extra vitamin D from getting adequare sun everyday and somethings supplementally as in cod liver oil.

Armour thyroid is a prescription drug and significantly less expensive than Synthryoid with fewer side effects. My monthly prescription is less than $20.00 usd.

Hope you are feeling better soon.

CHarlie's Mom
mjh

epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/24/2005 1:49 PM (GMT -7)   
Here is a list of Herbal remedies found OTC that people like to think they lessen seizures, when there is no PROOF that these things prevent or lessen seizures.

Kola, Guarana, Bitter Orange, Country Mallow, Ma Huang, Valerian Root, Kava Kava, St. John's Wort, Ginko, Mate, Eucalyptus, Evening Primrose Oil, Ginseng, Eleuthero Root, Hawthorn, Saw Palmetto, Goldenseal, Sage, Thistle, Ephedra, and Licorice, there are more, but I don't have my list of stuff in front of me. This a partial list. Also, DON'T DRINK OR CONSUME ANYTHING WITH GRAPEFRUIT!!! HUGE interactions wtih AEDs.

The information I have says NOT to take "alternative"drugs, as they are being called, because they will cause serious side effects and damage to body parts or the brain. They can cause dangerous BP increases, more seizures, heart problems, low BP, increase in side effects of one drug, and decrease the side effects of another, cause neuro and liver toxicity, and the list goes on.

ALL HERBS ARE OUT FOR the treament of seizures. It doesn't help them or the person having them.

Docs may prescribe you magnesium, B-9 or B-12, or even Folic Acid. Even males get Folic Acid, because if they take Depakote they're going to need it.

The supplemental vitamins prescribed by your doc is merely to make up for the depleted vitamins lost through AED therapy, NOT to prevent seizures from occuring.

DO NOT TAKE ANY KIND of herbal supplement without asking your doctor first.

Self-medication is not a good practice, when our brains are already haywire.

Kitchen herbs that are natural that you eat shoudn't be a problem.

But they are NOT a replacement for the drug therapy.

AEDS are the only thing other than surgery that control epilepsy for adults. Kids can use the Ketogenic Diet.

Not, herbs, or little things that you make up out of things, with oil, none of that stuff. However, cod liver oil is a good thing to take, it decreases the chances for heart disease and heart attack, by keeping you arteries cleaned out. But don't get to heavy with it. it has its own nasty side effects that will keep you close to the bathroom all day.

Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!


epileptic_Cajun
Regular Member


Date Joined Dec 2004
Total Posts : 45
   Posted 1/25/2005 1:04 PM (GMT -7)   
Here is the rest of that list of herbal remedies that I have on a list in my textbook. There may be more that I don't have listed anywhere. I guarentee there are more out there, but I don't have them lsited. Just because I didn't list something, doesn't MAKE it SAFE to take.

Echinacea, Nettle, Kelp, Ginger/Ginger Root, Milk Thistle, Thisilyn, Green Tea, Penugreek, Dong Quai, Cascara Sagrada, Grapefruit Seed, Flax Seed, Ginko Biloba, Black Cohosh, Feverfew, Silent Night, Leg Veins, Bee Pollen, Blood Sugar, Bilberry, Olive Fruit, And Olive LEaf. Even those these next two are edible, they cause severe interactions and serious side effects of both the Herb or the drugs being taken--Garlic and Oregano.

Somethings just have to be given up when certain problems exsist.

Herbal supplements are one of those with epilepsy.

The are ALL DANGEROUS!!!!

REMEMBER DON'T CONSUME ANYTHING WITH GRAPEFRUIT OR GRAPEFRUIT JUICE!!!!

Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.

Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.

Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.

I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.

I failed 7 other drugs.

I take Depakote-1000 mgs and Neurontin--3600 mgs

--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!

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