Where's the line, What is/isn't worth it

[Blonde Angel]

I am a busy mummy with not just a girl with special needs but 3 males who need my attention and love .., that includes my hubs.

It's about damned if you do and damned if you don't.
I wish my girl can say anything, I wish she didn't have Autism, I wish she had no seizures, I wish I could take it all away but I cant.
My world involves therapy.
*Speech having expressive and receptive language goals to provide her with a augmented communication device to be her voice

*Nutritional support to assist her in having brain food not toxins which is prescribed by medical Dr that specialises in Nutritional Medicine

* Occupational Therapy
* Developmental Paediatrician
* Paediatric Neuro
I believe in trying than not trying at all to piece the puzzles ( sometimes there's no easy answer, sometimes it's something simple that's made a big issue)
No regrets.

I don't want to think why we didn't try to fight for my girl, to advocate what will make us all healthy and happy with quality of life.

I'm in a war with Autism and Epilepsy, they are my girls enemy.
I will fight for her till I die.

 

[TongueTied]

Before medication I was constantly seizing. I was having hundreds of seizures a day, multiple types of seizures. I couldn't sit up on my own, I couldn't talk, I couldn't feed myself. I went into status every 3-4 days, a 20 minute TC was a short seizure for me.

Now I'm on three different AEDs, all very high doses and I haven't got very much control. I still have 70+ seizures a day, but most of them are smaller (absences and atonics), with only 1 or 2 being TC. My TCs do tend to cluster (typically a cluster of 30+ TCs over a 3-4 day period) or go status, needing buccal midazolam, phenobarb IV or midazolam infusion to stop them (more than likely all 3), because of this the longest I've been out of hospital this year has been just under 3 weeks. So although it's a massive improvement, I'm still not able to be independent

I have rotten side-effects. I have nausea, stomach ulcers and other gut issues, I'm always extremely tired and a lot of the time I have trouble thinking of the correct word to use. Concentration and memory are also pretty dodgy.

I know my medications have long-term effects, I have regular testing on my liver. I avoid drinking and any unnecessary medications that may cause further damage. My bones have already started to weaken, it looks like osteoporosis or arthritis will most definitely be in my future, I already have calcification going on.

I have some faith in non-pharmaceutical means of treatment, I was on the ketogenic diet for 4 years when I was younger and while it didn't get rid of all my seizures I was able to lower my doses of AEDs. I've only just come off the MAD after 2 years with very little improvement. I think you need to find a balance between the two (non-pharmaceuticals and pharmaceuticals). I find the research and tests they're doing at the moment regarding cbd oil looks promising for some of the more severe epileptic syndromes.

I stay away from alcohol. I make sure I have a regular sleep pattern and get to bed early, which at 20 years old it kind of prevents a social life. I eat healthy, I've given up on processed foods and foods high in acid, along with soft drinks and cordials.

I don't think at this point I have anything to lose. I don't drive, I don't have a job, I can't live by myself. I'm still dependent on my parents and my family.
If there's any possibility that a natural treatment may work, I'm more than willing to try it.

 

[Mr.21T]

Very good topic.

1)How "bad" are your seizures when untreated?

-Uncontrolled, I would have two tonic-clonics lasting for ten minutes every two weeks, along with smaller myoclonic seizures and absence. Started as a teen.

2)How well controlled are your seizures when on meds?

-No tonic clonics, occasional myoclonic jerks but nothing that leaves you unconscious for 10+ hours.

3)How severe are the side effects of your meds?

-Take only 200mg of Tegretol daily, but I can feel it effecting my thinking. Negatively and positively. Emotion, or Passion, is removed from most thoughts and no matter what happens, nothing is as "exciting" as life off of meds. This is actually a good thing because my thinking and actions post-seizure would often get me into hot water with friends, family, and co-workers, but it's kind of my version of the "pizza and beer" question.

It isn't that life would be better without mind-altering meds, but life would be...life.

4)Do you believe your meds cause long term side effects perhaps more subtle but dangerous over time? Does this bother you?

-Yep, but it's simply the cost of control. Liver, kidneys, neurotoxicity, etc. Doesn't bother me as much as when I was on Depakote.

5)How much faith, if any, do you have that any non-pharmaceutical treatment will make any difference?

Actually have faith in a lot of vitamins, minerals, and herbs [] to control symptoms and seizures. Personally I've been at my best getting all necessary magnesium, hydration, and balancing blood sugar. This means not eating a lot of bread, sugar, snack foods, sodas, and liquor. It feels like a brick in a two-story house at times but after a while it becomes habit. Restraint sucks but it does go a long way in my case.

6)What would you have to "give up" and how important is it to you, how hard would it be?

-I had to give up drinking with friends, late night hangouts, Pop-Tarts, video game marathons, and college athletics. It's been hard because all these things were essentially my identity. Now, none of those things are meant to last for a long time, but it's like a stepping stone on the way to adulthood. Like going away to school, or binge drinking with a loved one.

Now I'm stripped of all the things I cared about, regularly taking a drug that makes me not really care about anything. I'm a writer but I have no passion for it on meds, only the writing gigs I can get and the money I can bring in per week.

A lot of the famous people with epilepsy, St. Paul, Agatha Christie, Napoleon, Danny Glover, Alexander the Great all were great partly because of their emotional passion and emotion. It causes me to occasionally double-think my method of treatment.

7) Individual, personal factors in your world making you more/less risk averse.

-E has made me a reasonable, thoughtful, risk-averse young adult and I hate myself for it. I feel like a 48 year old in a 24 year old's body. I'm blessed to have controlled e and my electric personality so well, but I don't have many friends, and I don't even enjoy most of what I do.

I hang out with people my own age, and they often ask, "What's wrong with you? You don't drink, you don't go out, why don't you want to have fun?" And the sad thing is that I do want to have fun, I really do. But I want to be stable and independent more. When off meds, I'm eccentric, always getting people to laugh, dance or drink, when I'm not having partials. On meds I have no desire to dance, smile, or party but I also don't have seizures.

 

[AlohaBird]

I want to take a minute and say a heartfelt thank you to everyone who has shared their very personal stories here and hope they keep on coming.

Understanding the factors in another person's decision making, what is significant for them (or not) is interesting and I think may help us keep from drawing up battle lines so much regarding whatever treatment option is under discussion be it pharmaceutical or non.

 

[AlohaBird]

I am a busy mummy with not just a girl with special needs but 3 males who need my attention and love .., that includes my hubs.

I believe in trying than not trying at all to piece the puzzles ( sometimes there's no easy answer, sometimes it's something simple that's made a big issue)
No regrets.

I'm in a war with Autism and Epilepsy, they are my girls enemy.
I will fight for her till I die.

Blond Angel's decision process is compounded by the fact that her daughter is challenged with both epilepsy and autism. I think this is true of a lot of people on CWE. I've had cancer, Cint and Ruth have diabetes. A lot of us seem to have more than one medical challenge to deal with.

And yes it it a puzzle with new pieces all the time. We may never get the whole puzzle put together but we keep trying. No regrets.

 

[AlohaBird]

Before medication I was constantly seizing. I was having hundreds of seizures a day, multiple types of seizures. I couldn't sit up on my own, I couldn't talk, I couldn't feed myself. I went into status every 3-4 days, a 20 minute TC was a short seizure for me.

Now I'm on three different AEDs, all very high doses and I haven't got very much control. I still have 70+ seizures a day, but most of them are smaller (absences and atonics), with only 1 or 2 being TC. My TCs do tend to cluster (typically a cluster of 30+ TCs over a 3-4 day period) or go status, needing buccal midazolam, phenobarb IV or midazolam infusion to stop them (more than likely all 3), because of this the longest I've been out of hospital this year has been just under 3 weeks. So although it's a massive improvement, I'm still not able to be independent

I have rotten side-effects.
My bones have already started to weaken, it looks like osteoporosis or arthritis will most definitely be in my future, I already have calcification going on.

I don't think at this point I have anything to lose.
If there's any possibility that a natural treatment may work, I'm more than willing to try it.

OhMyGoodness. I am "TongueTied" at the very thought of what you have been through and still have to endure.

This is definitely a case of bringing out everything in the arsenal, Rx and otherwise, because, as you said, there is nothing to lose.

It's interesting that you and I both came to the same conclusion but from opposite ends of the spectrum. I feel I have nothing to lose because my seizures aren't that bad and I have good control while you feel you have nothing to lose because yours are frightful without meds and only somewhat less frightful when medicated.

 

[AlohaBird]

Take only 200mg of Tegretol daily, but I can feel it effecting my thinking.
It isn't that life would be better without mind-altering meds, but life would be...life.
... it's simply the cost of control. Liver, kidneys, neurotoxicity, etc.

Actually have faith in a lot of vitamins, minerals, and herbs [] to control symptoms and seizures. Personally I've been at my best getting all necessary magnesium, hydration, and balancing blood sugar. This means not eating a lot of bread, sugar, snack foods, sodas, and liquor. It feels like a brick in a two-story house at times but after a while it becomes habit. Restraint sucks but it does go a long way in my case.

-I had to give up drinking with friends, late night hangouts, Pop-Tarts, video game marathons, and college athletics. It's been hard because all these things were essentially my identity. Now, none of those things are meant to last for a long time, but it's like a stepping stone on the way to adulthood.

A lot of the famous people with epilepsy, St. Paul, Agatha Christie, Napoleon, Danny Glover, Alexander the Great all were great partly because of their emotional passion and emotion. It causes me to occasionally double-think my method of treatment.

-E has made me a reasonable, thoughtful, risk-averse young adult and I hate myself for it. I feel like a 48 year old in a 24 year old's body.

I hang out with people my own age, and they often ask, "What's wrong with you? You don't drink, you don't go out, why don't you want to have fun?" On meds I have no desire to dance, smile, or party but I also don't have seizures.

What's so bad about being a reasonable thoughtful adult? It had to happen eventually.
(Jk, from someone old enough to be your mother who still knows how to party )

But that is interesting about the mental aspects of seizure control. At first in my case of E, it actually made me more of a risk taker because I really didn't care if I lived or died. After I started to get some control, then I became more risk averse because I didn't want to lose that control.

 

[Blonde Angel]

Pleased to see another Aussie Tongue Tied.. G'day


Reading everyone's feed back there's different challenges, different negatives.
You are all tough cookies who try to fight back each and every day.
Kudos to all.

 

[AlohaBird]

Has anybody else had their POV about various treatment options change over time?

Resaebiunne was saying that worsening symptoms made the meds more essential but that s/he has recently added some supplementary treatments as well so people's thoughts can shift.

Personally, I started out with meds not knowing there was any alternative and scared senseless at 22. The side effects were so bad and the pills weren't really helping (Tegretol) though that I tossed the meds at the first opportunity and went unmedicated for quite a while. I was completely disillusioned with the medical profession at this point.

This was also a time when I was the opposite of healthy, partying my a$$ off to self medicate.

When I pulled my head out and decided to get into body building I cleaned up my diet/lifestyle and saw such a huge difference in my seizures. This is why I am so certain that these are so vital.

While I got very good control just with diet/lifestyle changes, it wasn't complete control. I let a family friend neuro talk me into a prescription and I got the complete control but at the expense of my health (weight gain, sleepiness, lack of energy) but I went along like that for a lot of years just so glad that the seizures were gone.

Now that I'm getting older, the prospect of long term side effects is becoming more central in my thinking so fine tuning my alternative measures is my current project so as to be able to get off the medication or at least reduce it.



Those of us who have had 30+ years of dealing with this condition have had time to do some trial and error along the way.
The information overload on someone newly diagnosed must be overwhelming.

 

[Mr.21T]

Speaking of long term side effects. ...

There have been very rare reports of impaired male fertility and/or abnormal spermatogenesis.

Testicular atrophy occurred in rats receiving Tegretol orally from 4-52 weeks at dosage levels of 50-400 mg/kg/day. Additionally, rats receiving Tegretol in the diet for 2 years at dosage levels of 25, 75, and 250 mg/kg/day had a dose-related incidence of testicular atrophy and aspermatogenesis. In dogs, it produced a brownish discoloration, presumably a metabolite, in the urinary bladder at dosage levels of 50 mg/kg and higher. Relevance of these findings to humans is unknown.

One reason I went rogue and stopped taking meds three years ago was because of this, the fact that you may have to give up your balls to stop having seizures.

I have taken these particular meds for five months, and the long term side effects are noticeable. I'm almost 25, but I ache like an old man now after a few hours work, I have to do regular cardio and keep up heart health. I have to work really hard to speak correctly, and many times I walk into a room and ask myself, "What did I come in here for?"

Those things are manageable but when you say, "Hey buddy you will be seizure free for three years but...you'll be unable to reproduce for the rest of your existence" I'm really forced to contemplate what really matters in life.

Is it security, doing what's necessary to live another day? Or is it experience? Being actively present in life's peaks and valleys? Though I'm privleged to have my seizures controlled, E has ruined my life a few times. But I look to other methods mostly because i want to raise a large family someday.

 

[epileric]

Those things are manageable but when you say, "Hey buddy you will be seizure free for three years but...you'll be unable to reproduce for the rest of your existence" I'm really forced to contemplate what really matters in life.

I have to admit that the thought of testicular atrophy is scary but I'm not often too worried about studies done on rats, especially when they're done like this.

I've been on the maximum dose of tegretol (1600 mg) for over 30 years and Tegregol has been around for a very long time yet there has been no sign of human testicular atrophy. Right there that makes me skeptical.

Also you have to look at how extremely high the doses are. Even me being on the maximum 1600 mg of Tegretol means that I'm on 0.07 mg/kg of body weight.

The study says:

Testicular atrophy occurred in rats receiving carbamazepine orally from 4-52 weeks at dosage levels of 50-400mg/kg/day.

That means these rats were getting between 714 and 5,714 times the dose per kilo that I take & I'm on the maximum dose. I think we need to look at these things in perspective when such claims are made.

 

[AlohaBird]

Lab studies do often use much higher levels of any given drug being tested than would be taken by a human but that is because they can't test it over a human life span. Rats don't live that long and most experiments don't wait for even them to die of old age. They cut them open after however many weeks.

They are also usually in search of the upper tolerable limit of something, the point where it starts causing clear visible problems, such as gonad atrophy, within the time frame of the test.

This doesn't rule out there being some more subtle problems at lower doses over a longer period of time.

For instance there has never been a gold standard level test on aspartame in humans but there have been many in rodents using large amounts over a short period of time which clearly indicate that brain tumors are a potential problem.

So, probably having a few diet cokes won't hurt you, obviously many people manage to drink quite a lot of the stuff, but I would rather err on the side of safety personally.


(note: just using the aspartame studies as an example since I don't know the particulars of the tegrtol study above.)

 

[masterjen]

It is extremely important to keep things in perspective as epileric mentions. It is very easy to fall into the trap of believing someone else's interpretation of data and assume it applies to humans: (a) because we like the person presenting the information (b) s/he is a doctor/scientist/researcher so s/he must be right (c) look at all those scientific studies being quoted; s/he much be right (d) these people being interviewed on tv say it worked for them, so it must work. We always need to check the claimed information by doing our own research, and ensure that it is based on proper scientific research and methodology (not to mention logic).

 

[masterjen]

Alohabird: any medication or chemical used in extremely high amounts is going to likely have negative consequences. You can't equate poisoning a rat with medication or chemicals at exceedingly high mg/kg levels it is clearly not going to tolerate with what would happen in humans taking more reasonable mg/kg doses. This isn't a logical comparison, and contributes to the "fear-mongering" of many anti-scientists who postulate that people should avoid research-proven medications that work on humans for one's particular condition.

 

[AlohaBird]

It is extremely important to keep things in perspective as epileric mentions. It is very easy to fall into the trap of believing someone else's interpretation of data and assume it applies to humans: (a) because we like the person presenting the information (b) s/he is a doctor/scientist/researcher so s/he must be right (c) look at all those scientific studies being quoted; s/he much be right (d) these people being interviewed on tv say it worked for them, so it must work. We always need to check the claimed information by doing our own research, and ensure that it is based on proper scientific research and methodology (not to mention logic).

I agree with every word.

With things as they are on the net today you can find a study or a researcher to back up either side of any given issue. Finding high quality sources is even more important these days.

It is extremely important to keep some other things in perspective as well.

The drug being prescribed by a doctor has not necessarily been tested for long term effects at all (on any creature) If you have been taking a drug since it came out and it has been out for decades and you have had no ill effects, you are a lab rat who got lucky. Either the drug turned out to be safe or you were one individual in the #% who did not have any negative effects.

And even though your doctor might be a nice person with the best of intentions, they don't always know everything. I know my HMO doc is massively pressed for time working way longer hours than she is getting paid for just because she cares. She also has a family to take care of. When she would ever have the time to read all the latest studies, I don't know.

As Jen said, it is up to us, ultimately, to do our own research and to make our own decisions.

But this comes back to the point of the thread. For each of us that decision making process is going to be a little different. For me, past 50 and with only one kidney and no "spare", any information I run across that indicates a potential issue with long term toxicity issues of any given treatment is going to carry more weight.
For someone with two young and fully functional kidneys, the more weighty issue might be getting seizure control in the short term.

 

[AlohaBird]

"fear-mongering" of many anti-scientists who postulate that people should avoid research-proven medications that work on humans for one's particular condition.

Taking an honest look at the limitations of what is possible with the scientific method is not anti-science. It is simply not possible to long term test something (lifetime type of long) on humans before it is given out.

I don't know if you missed it , but throughout this thread I have been talking about each person's personal choices. Nobody is telling anybody to avoid medications or to take them here. People are sharing their personal stories of what goes into these decisions *for them*.

The degree of risk a person is willing to take in taking any given medication or other treatment is a very personal one. But no doctor can stand there and tell you that any given drug is *completely* safe especially when the drug is new.
We can think of examples such as Vioxx and Thalidomide off the tops of our heads.

 

[epileric]

Taking an honest look at the limitations of what is possible with the scientific method is not anti-science. It is simply not possible to long term test something (lifetime type of long) on humans before it is given out.

I don't know if you missed it , but throughout this thread I have been talking about each person's personal choices. Nobody is telling anybody to avoid medications or to take them here. People are sharing their personal stories of what goes into these decisions *for them*.

I agree that acknowledging the limits of the scientific method is critical to getting the most out of it. However I've seen many people claim that because science has limits then something that the scientific method hasn't proven (or has misproven) must have validity too and that it just falls outside the limits. Anyone who understands science knows that to be a complete fallacy.

I think what Jen was talking about when she referred to fear-mongering was how some people will post snippets of a study Like the one I posted while omitting certain factors like what the normal dosage per kilo for a human is to misrepresent the danger of something- be it herbal or pharmaceutical. It's presenting things in such a misleading fashion that don't allow people to make their choice an informed one.

 

[AlohaBird]

I think what Jen was talking about when she referred to fear-mongering was how some people will post snippets of a study Like the one I posted while omitting certain factors like what the normal dosage per kilo for a human is to misrepresent the danger of something- be it herbal or pharmaceutical. It's presenting things in such a misleading fashion that don't allow people to make their choice an informed one.

I just objected to the term "anti-science" just when we all were doing so well with not making things adversarial. As Bernard said, it is a shared quest for truth, not about taking sides.

Nobody has been mislead. All the facts are out there now. What kind of a study was involved, how long, what dosage, why studies are done the way they are, and the limitations of many lab studies. All that came out in the discussion.

Given all those facts people can still come to very different conclusions about what they want to do in their lives. They can decide that this study is irrelevant *to them* or they can decide that, while not gold standard proof, it is still indicative of a higher than acceptable risk *for them*.

Neither conclusion is right or wrong. Neither decision is pro or anti science.

 

[Blonde Angel]

Aloha Bird
You mentioned you were born with one Kidney, do you have to monitor your biochemistry levels via blood tests on a regular basis? The creatinine levels demonstrate kidney function and there's no no foods that are quite high in potassium like bananas .
I'm well aware, as I have maternal Uncle who has had renal failure secondary to his diabetes and requires Haemodialysis in Europe. He has to aware of fluid and dietary restrictions.

 

[AlohaBird]

Aloha Bird
You mentioned you were born with one Kidney, do you have to monitor your biochemistry levels via blood tests on a regular basis? The creatinine levels demonstrate kidney function and there's no no foods that are quite high in potassium like bananas .
I'm well aware, as I have maternal Uncle who has had renal failure secondary to his diabetes and requires Haemodialysis in Europe. He has to aware of fluid and dietary restrictions.

At the risk of TMI, the one kidney I have is slightly larger than a normal one and yes they do regular renal function testing on me. So far I'm fine. I just want to make sure it stays that way. My grandfather and my uncle both died of renal failure. I have spent too much time in dialysis rooms with them already.

I appreciate your concern, BA