Is there a way to get doctors to try something other than drugs?

jlarson

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I've been on a handful of different drugs for 42 out of 50 years and none of them have ever totally controlled my seizures. All they've done is cause me to not be able to function decent due to the side effects. After investigating & experimenting the last 33 years with natural herbs, etc., long story short, I'm TOTALLY convinced that Someone gave us something MUCH better than drugs & surgery. I've seen improvements with herbs that I've never seen with any drug I was on.
The problem I'm having is, I can't seem to get any of the numerous doctors -especially neurologists- to do anything with my ideas to try to get my life back. Now, let me be clear: I'm NOT trying to get them to "authorize" any of the numerous herbs, etc. I've tried -I know that part is not in their training. But what IS in their training, be it minimal, is the effects of things like vitamins & minerals and their effects on the body. The scientific knowledge of things like low magnesium, (limited knowledge of) vitamin D, etc. on the nervous system, has been known for years to affect nerves -the same way protein, for example, builds muscle, or calcium (combined with several other nutrients) builds bone mass, etc. Things like this are taught in Jr. High & high school -obviously they are taught in basic skills in early medical college! So WHY is it SO next to impossible to get any doctors to talk about this or do any investigating -especially if the drug route doesn't seem to help much? Maybe more people could be helped by a simple blood test showing their Mg. level is low, or a dozen other possibilities? In my case, I was taken off all drugs by my pediatrician at age 10. I went all the way up to age 17 without a seizure, until I suddenly had one in class one day. Now, looking back, I noticed that for the last 6 or 7 years before, I was eating more processed/boxed/canned food, especially after us moving off the farm. Combine that with running over to the fast food places every day in H.S., now I see that's probably what lead up to them starting up again. After eliminating all other possibilities that may have caused them to start up again (I haven't had any other brain illnesses, I wasn't in any severe accidents causing any further brain injury, I never abused drugs or alcohol...) and as Sherlock Holmes said; "You eliminate all other possibilities, and that which remains is the truth.". If my theory turns out wrong, fine....at least I'll know. But I need to find a way to get them to listen to my idea. I mean, it doesn't take a genius to realize that if your body doesn't get the right nutrients, things aren't going to work right -including your nervous system! If it doesn't have everything to do with $$$$ and the drug companies' interest, why else are they so closed minded about things like this nowadays?
 
1. Neurologists are "close-minded” about alternatives because they need to work with tools that have the best scientific track record. I’m sure they are aware that certain nutrients can be neuroprotective, but they are equally aware of the limits of that approach. Magnesium, for instance, is great for treating pregnancy-related seizures (pre-eclampsia) but it has shown limited efficacy in treating other kinds. Herbal or nutriceutical approaches can be hard to gauge because amounts of active ingredients are often hard to determine. As much as you may want to be a guinea pig for a different approach, neuros are constrained in their ability to endorse one. HOWEVER, you are allowed to be “non-compliant” (their word, and one I detest) if you want to be. You can try alternatives to AEDs with or without their blessing, as long as you are aware of the risks. And even if they don't support your decision, you should keep them in the loop.

2. If you suspect that you are deficient in magnesium, you need more than a simple blood test to determine that, since the majority of Mg is found in the cells, not the blood serum. There are complex tests that are more accurate (RBC mg, ionic mg, EXA, tolerance test) but because they aren’t the default you may have to push a bit get one done, or go through a private lab.

3. Diet can definitely play a huge role. Depending on the kinds of seizures you are having you could ask your neuro about trying the Modified Atkins Diet or the keto diet, both of which have shown success in reducing seizures. A neurologist can help determine if you are a good candidate, and refer you to a dietician or nutritionist who can set up a meal plan. However, keep in mind that even if diet did play a role in triggering your seizure relapse, there's no guarantee that having a better diet will make you seizure-free. That's because: A. Seizures and seizure triggers can change over time. B. There may be additional secondary triggers to account for (hormones, metabolism, sleep patterns). C. The more seizures you have, the more likely you are to have seizures in the future. Through hard-wiring, what was once a tiny “detour” for the brain can become a highway route that it travels as a matter of course.

4. I'm not trying to discourage you! I wish I could go off of my seizure med, even though it fully controls my seizures. (I tried in the past.) Meds are blunt hammers in treating epilepsy and they often come up short. Hopefully more refined tools will emerge that have better success rates. Epilepsy is just a catch-all term for a disorder that can have many different causes and iterations, so I suspect that future treatments will be tailored to individual cases.

5. Plenty of CWE members have had anecdotal success using alternative treatments. I know someone who treats her seizures by smoking pot. That wouldn't work for others who are sensitive to THC, but it works for her. You can search the CWE archives and ask about what others have tried. As always, proceed with caution -- your mileage may vary.

I wish you the best of luck! I hope you can find relief using approaches that you feel comfortable with that have minimal side effects and maximum seizure control. Keep us posted!
 
Hi jlarson,

Oh take my word I've been on so many different seizure meds and the only one that really helped me was Depakene (Depakote)
but I started that when I was around 16 and my body became immune to the drug and the seizures continued.

What you need to do is when you see your neuro tell the neuro that you want a DNA test done, this is what my Epileptologist ordered
for me. The test will show the amount of enzymes in a persons liver and it shows the body chemistry. When the Dr. looks at all of this
they can match you up to the best seizure med with the least side effect or it will tell if you are drug resistant. I found out I am drug
resistant so my Epileptologist told me to start using medical marijuana and take my word that has helped me like you wouldn't believe
I buy it online at PlusCBD.com and I get it in a mouth spray form with very little thc. The other thing that has helped me a lot is taking
2 Tablespoons of apple cider vinegar with mother in it in the morning before I eat my breakfast. The mother is a form of protein and
a good bacteria I was using it to lose weight but it reduced my seizures to the lowest in my life. I know it sounds like a lot but so far
this yr. I've only had 38 seizures where before I started using the cbd and vinegar I had around 114 seizures average a yr. and that was
after I had surgery.

Stay away from nutra sweet (aspartame) because that can cause more electrical activity in the brain and in turn trigger seizures. I found
that out the hard way when I bought diet soda and then the seizures skyrocketed. Also try the ketogenic diet it works good. You may
also want to try taking vitamin B12 1000 mcg. once a day that helps calm the nerves.
Wishing You only the Best and May God Bless You,

Sue
 
I'm not sure if this will help, but something I forgot to mention before:
The first thing my herbalist I was with at the time about 20 years ago put me on was called "OPC 3". It's a grapeseed (and a few other things) extract. I was on that for less than 2 weeks when I had a seizure on the bus in town one day (actually 3 in a row). Well, that was the first time in my life I ever sat up in between seizures seeing & hearing everything that was going on! And the first time since I was a kid I could walk away IMMEDIATELY afterwards unaided (otherwise since H.S. it would take me hours to even be able to sit up -let alone stand or walk again.) Now I know there's NO drug that will do that, and I didn't change anything else. Since then, things seem to be improving to some extent, long story short. In fact, the last few seizures I have had, the auras weren't anything like they have been in my life before; totally different feeling and MUCH shorter (better or worse, depending on how you look at it.)
I guess the reason I'm looking for any advice on how to get through to my neurologist is regardless of how few seizures I may end up having someday if I'm on the right track, they all seem to INSIST that you need to legally be on some drug to drive. Now, first off, I KNOW that is not correct (not only am I a former police student and.....shall I say, police informant, and leave it at that, but I've been over that part of the Administrative code numerous times myself! Not only is there nothing in State Statutes mandating medication, but the D.O.T. has told me that themselves on 3 occasions!) If I am ever able to drive again, I don't know how to get this through to the doctors, or to prove to them that I haven't had any in however long.
I guess what I'm wondering is how to get points across to the doctors when you have such limited time with them nowadays.
 
The problem with conventional medicine is that it doesn't usually pinpoint why the whole problem started in the first place. Conventional medicine can be great to a point. It has it's place, but when it comes to convincing doctors to do anything natural, it's a bit difficult unless they believe in natural medicine (which they were more than likely NOT taught in medical school) like you've also mentioned so they stick to their guns on it. They are taught to "treat", not "cure," in most cases.


Not to mention, the medical board has taken medical licenses away from doctors that have ventured into the "natural" and have cured people with terminal illnesses. There is a type of government control over that whole system and I do believe a lot of doctors are afraid of getting their license revoked. They may still have student debt and this is the way they are paying their bills. There have been doctors in the recent years that have cured cancer and terminal heart issues or have made comments on findings that no other doctors are talking about and yet, they are punished.

If you truly want natural, you're probably going to have to look up a good naturopathic doctor if they have them in your area. There's a few good ones here in the big city, but the problem is they are incredibly expensive because they don't take insurance. Many will give you itemized receipts for labs and such so you can try to get a refund through your insurance, but the insurance doesn't have to accept it. It can be worth it, but costly.

What doctors and nurses learn in medical school about nutrition is limited. They may learn what calories, carbs, sugars, fats, etc. are and their basic composition and their role in the body. They know the difference between water soluble and fat soluble vitamins and what different vitamins do. Professionals like dieticians and nutritionists are often bound by the government food standards, which of course I personally don't believe is accurate because not everyone's body is the same.

There have been many studies that people with seizures often lack certain vitamins like D3, magnesium, B-vitamins of various sorts, etc. etc. they have also found that those with Celiacs disease or those with Autism may be more prone to seizures. I have A LOT of problems with grains, so I wouldn't be surprised if I am a Celiac. Long-term wheat use harmed me in so many ways, but growing up - it's not something doctors ever looked for. They thought, "Oh, she's perfectly healthy!" Then I start having seizures and it's like, "What happened!? She was healthy!" I must not have been.

I had continued problems with eating wheat into my adult life. I ended up with bad knee bursitis and couldn't walk. Bone and joint pains. All sorts of fun stuff. Never guessed it was because of wheat. Years ago, I kicked all grains and started replacing them with veggies. My teeth had never been healthier, I had never felt better like...ever! Sadly, I slipped on my diet years ago. Right now, I'm fighting to get back to grain free because that's what helped me the most and also to get outside in the sun more and take my magnesium spray like I used to.

I found out on my own that I had issues with most grains. No doctor ever suspected it. My mom paid for this allergy test thing for our family and it was like a lightbulb turned on.

Diet matters so much, especially when giving nutrition to the brain. The brain needs a lot of nutrition as well as healthy fats. It's no wonder the keto diet took off for mostly children with epilepsy so many years ago and the use has seemed to widen it's audience to adults with health problems.

I also think it's difficult to get a neurologist to listen because seizures can be incredibly dangerous. I was off of my medication for 15 months with neurologist permission, but there were certain environmental factors that we learned probably weren't helping as well as my diet slipping and then COVID was the cherry on top. When I got back into the neurologist a year after those events unfolded because of the wait times and such...it was, "Well, it looks like you're back on medication for life pretty much so..." as someone that prefers natural, it's like the worst news ever...

The medication I am on generally works, but now I'm having more struggles so I need to get my grain consumption under control again since that helps me greatly.

So if a neurologist prescribes it and it is controlling the seizures, they have no interest to change it.

Medications can work quickly. It can take time to build up optimal levels of a medication, but it's something I think a neurologist would think would work quickly and a seizure patient would be less likely to hurt themselves or others.

I'm a mom, so I'm thinking I could be considered dangerous to others or a doctor if I weren't taking medication. So I'm basically taking it because I have to at this point and maybe the benefits outweigh the risks as far as the safety of my kids is concerned since the chances of me having a seizure around them in much less. Sometimes it's nice to have medication and be able to sleep at night than have seizures all night and wake up with a higher risk for more seizures and dead tired all day long.

The problem, though, is the medications also sap nutrients and can make seizures worse.

It's a big issue with those with chronic illnesses. We're bombarded with, "Do this," or, "Do that," or, "Take this pill or that one," and it never seems to end.

I would love for seizures not to bother me, but I think I'm sensitive to things that are in many places like molds. Having rice can send me into a seizure so I have to be incredibly careful with that one (stupid food allergies!). Although, food allergies some believe are due to issues like leaky gut and it does make sense. I only make it worse for myself when I'm eating wheat and other grains that I'm a bit sensitive to.

For me, chewing a dried marijuana bud helps. If I feel a seizure coming on and I need something quick - it tastes awful, but I chew it and keep chewing it for a good 5-10 minutes. It takes about that time to stop any tremors or spasms and I will certainly be tired, but at least my mind will be alert! It works better than a benzo. I use this in conjunction with my medication I'm on. Although, if that's all I needed without medication and it was effective every time, I would love to be able to do that, but that stuff isn't cheap, either, and it's not going to help me with nocturnal epilepsy on the spot if I'm trying to sleep.

Avoiding triggers is also important. Knowing your own triggers is of course helpful. For myself, poor quality and not enough sleep puts me at risk. Artificial sweeteners and my own food allergies/sensitivites are big triggers for me. A lot of places hide artificial sweeteners in their foods, too - it's such a pain.

I figure at this point for myself...I can use as much natural as I'm able with my medication. At least in the long-run it would keep my dosage much lower if I were taking measures to avoid triggers and nourish my body with healthy, non-super processed foods. I try to keep a little light of hope there.
 
The problem with conventional medicine is that it doesn't usually pinpoint why the whole problem started in the first place. Conventional medicine can be great to a point. It has it's place, but when it comes to convincing doctors to do anything natural, it's a bit difficult unless they believe in natural medicine (which they were more than likely NOT taught in medical school) like you've also mentioned so they stick to their guns on it. They are taught to "treat", not "cure," in most cases.


Not to mention, the medical board has taken medical licenses away from doctors that have ventured into the "natural" and have cured people with terminal illnesses. There is a type of government control over that whole system and I do believe a lot of doctors are afraid of getting their license revoked. They may still have student debt and this is the way they are paying their bills. There have been doctors in the recent years that have cured cancer and terminal heart issues or have made comments on findings that no other doctors are talking about and yet, they are punished.

If you truly want natural, you're probably going to have to look up a good naturopathic doctor if they have them in your area. There's a few good ones here in the big city, but the problem is they are incredibly expensive because they don't take insurance. Many will give you itemized receipts for labs and such so you can try to get a refund through your insurance, but the insurance doesn't have to accept it. It can be worth it, but costly.

What doctors and nurses learn in medical school about nutrition is limited. They may learn what calories, carbs, sugars, fats, etc. are and their basic composition and their role in the body. They know the difference between water soluble and fat soluble vitamins and what different vitamins do. Professionals like dieticians and nutritionists are often bound by the government food standards, which of course I personally don't believe is accurate because not everyone's body is the same.

There have been many studies that people with seizures often lack certain vitamins like D3, magnesium, B-vitamins of various sorts, etc. etc. they have also found that those with Celiacs disease or those with Autism may be more prone to seizures. I have A LOT of problems with grains, so I wouldn't be surprised if I am a Celiac. Long-term wheat use harmed me in so many ways, but growing up - it's not something doctors ever looked for. They thought, "Oh, she's perfectly healthy!" Then I start having seizures and it's like, "What happened!? She was healthy!" I must not have been.

I had continued problems with eating wheat into my adult life. I ended up with bad knee bursitis and couldn't walk. Bone and joint pains. All sorts of fun stuff. Never guessed it was because of wheat. Years ago, I kicked all grains and started replacing them with veggies. My teeth had never been healthier, I had never felt better like...ever! Sadly, I slipped on my diet years ago. Right now, I'm fighting to get back to grain free because that's what helped me the most and also to get outside in the sun more and take my magnesium spray like I used to.

I found out on my own that I had issues with most grains. No doctor ever suspected it. My mom paid for this allergy test thing for our family and it was like a lightbulb turned on.

Diet matters so much, especially when giving nutrition to the brain. The brain needs a lot of nutrition as well as healthy fats. It's no wonder the keto diet took off for mostly children with epilepsy so many years ago and the use has seemed to widen it's audience to adults with health problems.

I also think it's difficult to get a neurologist to listen because seizures can be incredibly dangerous. I was off of my medication for 15 months with neurologist permission, but there were certain environmental factors that we learned probably weren't helping as well as my diet slipping and then COVID was the cherry on top. When I got back into the neurologist a year after those events unfolded because of the wait times and such...it was, "Well, it looks like you're back on medication for life pretty much so..." as someone that prefers natural, it's like the worst news ever...

The medication I am on generally works, but now I'm having more struggles so I need to get my grain consumption under control again since that helps me greatly.

So if a neurologist prescribes it and it is controlling the seizures, they have no interest to change it.

Medications can work quickly. It can take time to build up optimal levels of a medication, but it's something I think a neurologist would think would work quickly and a seizure patient would be less likely to hurt themselves or others.

I'm a mom, so I'm thinking I could be considered dangerous to others or a doctor if I weren't taking medication. So I'm basically taking it because I have to at this point and maybe the benefits outweigh the risks as far as the safety of my kids is concerned since the chances of me having a seizure around them in much less. Sometimes it's nice to have medication and be able to sleep at night than have seizures all night and wake up with a higher risk for more seizures and dead tired all day long.

The problem, though, is the medications also sap nutrients and can make seizures worse.

It's a big issue with those with chronic illnesses. We're bombarded with, "Do this," or, "Do that," or, "Take this pill or that one," and it never seems to end.

I would love for seizures not to bother me, but I think I'm sensitive to things that are in many places like molds. Having rice can send me into a seizure so I have to be incredibly careful with that one (stupid food allergies!). Although, food allergies some believe are due to issues like leaky gut and it does make sense. I only make it worse for myself when I'm eating wheat and other grains that I'm a bit sensitive to.

For me, chewing a dried marijuana bud helps. If I feel a seizure coming on and I need something quick - it tastes awful, but I chew it and keep chewing it for a good 5-10 minutes. It takes about that time to stop any tremors or spasms and I will certainly be tired, but at least my mind will be alert! It works better than a benzo. I use this in conjunction with my medication I'm on. Although, if that's all I needed without medication and it was effective every time, I would love to be able to do that, but that stuff isn't cheap, either, and it's not going to help me with nocturnal epilepsy on the spot if I'm trying to sleep.

Avoiding triggers is also important. Knowing your own triggers is of course helpful. For myself, poor quality and not enough sleep puts me at risk. Artificial sweeteners and my own food allergies/sensitivites are big triggers for me. A lot of places hide artificial sweeteners in their foods, too - it's such a pain.

I figure at this point for myself...I can use as much natural as I'm able with my medication. At least in the long-run it would keep my dosage much lower if I were taking measures to avoid triggers and nourish my body with healthy, non-super processed foods. I try to keep a little light of hope there.
Everything you said is worth it's weight in gold! I've dug into 99% of what you said for years so far -plus enough more to probably fill a warehouse! I think I discovered the biggest factor in it all today when I went on Altavista and typed in "What did John D. Rockefeller have to do with modern medicine". After reading several of those hits I came up with, and about Carnegie and Flexner, and how they helped Rockefeller mess up natural medicine in the name of $$$$, I'm more convinced than ever I'm on the right track. I've read books by Kevin Tredeau, newsletters from Dr. Mercola, and a dozen more such people. I'm convinced I know where the problem is. Now the question is; Where do you start to undo the damage of the last 100+ years?
 
Everything you said is worth it's weight in gold! I've dug into 99% of what you said for years so far -plus enough more to probably fill a warehouse! I think I discovered the biggest factor in it all today when I went on Altavista and typed in "What did John D. Rockefeller have to do with modern medicine". After reading several of those hits I came up with, and about Carnegie and Flexner, and how they helped Rockefeller mess up natural medicine in the name of $$$$, I'm more convinced than ever I'm on the right track. I've read books by Kevin Tredeau, newsletters from Dr. Mercola, and a dozen more such people. I'm convinced I know where the problem is. Now the question is; Where do you start to undo the damage of the last 100+ years?
There's so much wrong that has gone on in the conventional medical system. There's also been a lot of rights, too. It depends which histories you read and where they go, but overall - it's a bit broken. It needs improvement, but I'm not certain it will ever make that 100% turnaround to doing as natural as possible. They refused a lot of natural or lower cost treatments that helped during COVID, why would they start now?

I do believe there are great doctors trying to make a difference, but their line of work can make it difficult unless they own their own naturopathic type of practice. Although, even then, big brother is probably still watching.

It's so much to unwind at this point that people need to know how they can advocate for themselves and do their research. To know when to follow a conventional treatment and when not to. I have learned my fair share in life between the two. There were times when conventional medicine saved my life and I know for a fact without it, I would not be here today. So, I am thankful we have medical staff that chose to take the schooling and be there. I also know that in some situations, natural medicine would be better than what the conventional would recommend with far less risk.
 
My heart goes out to you, and I go through many of the same struggles. When I get frustrated with my doctors, and I do a lot, It helps me sometimes to remember that neurologists and epileptologists only can understand and work within the limited boundaries that they have been educated. That is, to diagnose and treat with medications, and if that doesn't work to try non-pharmaceutical treatments like surgery. This doesn't excuse them, but helps me not be so surprised and not get so irritated. When I get irritated that just adds stress which can make my epilepsy worse.

I've dreamed of someday having a forum where those of us with epilepsy can communicate openly with doctors and neurologists to educate and give them feedback. Imagine how much they would learn, and how helpful that could be to the medical community. So, in the meanwhile I do the best I can taking care of myself. I tell people my brain is struggling endlessly trying to fix itself. Sending hope and good seizure free energy your way.
 
Anti-seizure medication has proven to be effective in preventing these electrical bursts in many sufferers by damping down the excitability of neurons.

However, anti-seizure medication treats the symptoms of epilepsy, not the underlying cause. “If we are going to change this, we need to do something dramatically different: we need to move further upstream to treat the root cause,” Dedeurwaerdere says.

This focus is now becoming possible thanks to “omics” technologies. These are molecular sensing techniques capable of revealing the molecular-level changes of genes, proteins, metabolites and other molecules that cause neurons to over-fire in parts of the brain.


**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

I have an extremely rare condition known as PNPO Deficiency. My story: https://www.coping-with-epilepsy.com/threads/40-years-on-vitamin-b6.11674/ (I have now been using vitamin B6 for over 51 years).
 
I'm sorry to hear about your struggles. Some doctors may hesitate to recommend alternative treatments that haven't been extensively studied or approved by regulatory agencies.
 
I'm sorry to hear about your struggles. Some doctors may hesitate to recommend alternative treatments that haven't been extensively studied or approved by regulatory agencies.
If you need help finding cheaper medications, I suggest checking out the rx website. However, some doctors are more open to exploring alternative treatments, so it may be worth looking for a more open-minded doctor. You could also consider seeking out a naturopathic doctor who specializes in using natural remedies and supplements to treat health conditions.
 
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