How can a patient tell what doctor to believe?

[Dignan]

I am, yet again, looking into going and seeing another new doc. Not because of seizure problems, but rather because of the effects of the seizure drugs I've had to take in my life.

I've done research and spoke to many different people, and some advocate mixing in "alternative" and natural medical philosophies, and some say that is quackery.

I've been referred to docs from other doctors, who ended up giving me nothing in the way of help. I've been told to see a DO or an MD or you name it.

It all gets so confusing as to knowing what is right, or knowing who is the quack and who is legitimate, and what the right option is. Does anyone have any advice on sorting through the jabber about who is right or wrong and get to the truth of what actually can be a help and not a waste of time or actual hindrance?

I'm exhausted from not feeling like myself for 3 and 1/2 years now.. and I just want to find someone who knows what they are talking about to help me make the right decisions so I can get on with my life. And through all the noise, and people who act like they have all the answers, finding the right physician of any type who actually is help feels farther and farther away.

 

[epileric]

I'm assuming DO is an osteopath? I've seen one before & got nothing out of it. I've also read up on osteopathy & found it to not be very credible.

This has been helpful to me, I especially liked the 3rd suggestion but read the whole article.

Bad information is the chief hazard of the Information Age. The glut of unregulated information about your health available on the world wide web constitutes both an incredible opportunity and a real threat to your safety and your pocketbook. In the absence of any publication standards, how can you tell the difference between the good and the bad? There are three major signs of poor quality in health information:

1) extraordinary claims
2) author hopes to sell you something
3) no evidence or references offered

Extraordinary Claims

 

[Dignan]

That makes sense, but alot of it is open to interpretation. For example, many people on this site advocate neurofeedback.

The standards you cited could be used to debunk that as a credible therapy. A neurofeedback doc in my area claims that he can help reduce seizures, which could be viewed as an extraordinary claim. You obviously have to pay them for the service. And, most normal MDs say the therapy is not useful, while the neurofeedback practitioner can offer their own studies they have published to support its effectiveness but also often claim that the neurofeedback treatment itself is not able to be confirmed through the normal medical trial process. They say this is why it is not seen as useful by others in the medical industry.

So again, it is not clear who is right to me.

Now, if you limit the criteria to info on the internet you may have more of a case, but I am speaking more about researching docs and getting advice from others online about physicians to actually see who might help with side effects or other epilepsy related issues. In those cases, the people online (like this forum) may not be selling anything and may be well intentioned, but the docs they advocate may or may not be reputable. And, like in the neurofeedback example, docs don't always agree and will often run down the efforts of others, leaving you as the patient to decide who is right.

 

[Nakamova]

There is a difference between advice that is supported by large, well-designed research studies, and advice that is based on anecdotal experience. Both may be accurate and true, but only one is (theoretically) proven across a large population. Unfortunately, with epilepsy there are so many variables and "unpredictables":
a. Epilepsy is a loose term to describe over 40 different syndromes
b. Within syndromes there can be wide variation in terms of prognosis and response to treatment.
c. Prognosis and treatment response can depend on age of onset, age of diagnosis, time to diagnosis, family health history, individual health history, individual behavioral and physiological characteristics, primary and secondary triggers, responsiveness to treatment, etc...

So even with treatments that have been widely studied and accepted by the health establishment, it takes a certain leap of faith. You go into them knowing that the doc can't guarantee efficacy, and that the process may be one of trial-and-error. Even the large-scale studies may be tainted by biases (read "Bad Pharma" if you really want to feel sick). You may have the best possible outcome on a medication, or you may be in the group for whom the treatment fails or the side effects are intolerable.

It's understandable that alternative and complementary treatments are dismissed by mainstream doctors -- the docs usually have no first-hand familiarity with them, and are not "allowed" to sanction a treatment that isn't supported by wide research. Insularity and ignorance can also play a role: You can find plenty of epilepsy specialists who are dismissive or unaware of dietary treatments, or treating specifically for catamenial epilepsy, despite solid evidence showing their validity.

Alternative treatments are limited by a Catch-22: They won't be accepted by the mainstream until there are large-scale studies, and no large-scale studies will be conducted until they are accepted by the mainstream. There are also commercial pressures (related to Big Pharma and health insurance) that will encourage or discourage the pursuit of alternatives.

Neurofeedback is very slowly growing in acceptance (even by insurers!), at least for treatment of children with ADD/ADHD. There are some studies being conducted by the U.S. military that may show its success in treating PTSD. And it's being used for other purposes by private corporations and sports teams. If you are interested in it, do a lot of research. (I recommend the book "A Symphony in the Brain"). Your local practitioner should be honest about what has and hasn't been proven with the technology. They should be able to provide information about any supporting studies that have been done, and references to real, satisfied customers. While it is only anecdotal, the experiences of CWE members can be helpful in this regard.

With a treatment like neurofeedback, the risk of negative side effects appears to be very low. So even with doubts and uncertainties, I feel it can be a risk worth taking as long as you have a basic confidence in the practitioner. With other treatments, the risk may be greater, so your level of comfort with your doctor (whether mainstream or not) is key.

 

[masterjen]

Something else I'd like to add: do your homework regarding the quality and type of study before discussing it with your doctor. Is the study "blind" or "double-blind", was a control group used, how many subjects were involved in the study, has anyone else performed a similar study and obtained similar results, over what period of time was the study carried out (eg. usually the longer the benefits of a treatment are measured, the more reliable the data). If you have some of this information available, it may help you (and your doctor, perhaps) decide to give the treatment a try. If an alternative treatment is being written about or talked about, the author/presenter should always provide study details mentioned above, or at least provide contact information so you can find some of these things out. If they are not willing to give study details, then the validity of their data should instantly be questioned.

 

[Cint]

So even with treatments that have been widely studied and accepted by the health establishment, it takes a certain leap of faith.......... You may have the best possible outcome on a medication, or you may be in the group for whom the treatment fails or the side effects are intolerable.

With other treatments, the risk may be greater, so your level of comfort with your doctor (whether mainstream or not) is key.

I took a huge leap of faith when I had my lobectomy........ and it failed. But my level of comfort with my epileptologist was the best with any dr. I've ever had. I haven't found a dr. that listened as well as she did since I moved. It made dealing with the return of seizures a bit more tolerable. So, as Nak said, your level of comfort is the Key!

 

[Cint]

Something else I'd like to add: do your homework regarding the quality and type of study before discussing it with your doctor. Is the study "blind" or "double-blind", was a control group used, how many subjects were involved in the study, has anyone else performed a similar study and obtained similar results, over what period of time was the study carried out (eg. usually the longer the benefits of a treatment are measured, the more reliable the data). If you have some of this information available, it may help you (and your doctor, perhaps) decide to give the treatment a try. If an alternative treatment is being written about or talked about, the author/presenter should always provide study details mentioned above, or at least provide contact information so you can find some of these things out. If they are not willing to give study details, then the validity of their data should instantly be questioned.

Also, you can check with this website to find out more about drug studies:
http://www.clinicaltrials.gov/ct2/search/index

Years ago I was part of a double blind study before the drug Sabril was on the market. Neither I nor my neuro knew if the drug was a "placebo" or the real drug. When I finished the study, I found out it was the real medication, but by then I was taken off it because of the bad side effects.

But even when drugs do make it thru all the testing and marketing, they can still not be the best for someone. I was prescribed Zyprexa for depression and ended up with Type 1 Diabetes because of it. Now there is a Black Box warning in the PDR for the docs to beware of. And also, my neuro informed me back in April that the new AED, Potiga, has been shown to cause blindness for some that have been on it for several years, so I had to go have my vision checked. I'll have to go to a specialist in 6 months.

 

[notime]

Hey,

Have you considered seeing an epileptologist ? It is a neurologist who specializes in epilepsy, so they should have more experience and education dealing with epilepsy. Perhaps you should consider seeing them, if just regular neurologists refuses to take you seriously.

Alternative medicine does help such as the ketogenic diet, perhaps talk to your neurologist about taking it but I think you would also need to take medication to continue taking it. I've heard people say they tried weed, the kind like oil that isn't suppose to get you high is suppose to stop it and I've seen youtube videos of parents claiming it worked and lowered a persons medication from 7 to 4 or so.

I am not experienced, my neurologist assumes it is epilepsy and after today I am 100% sure it is.

But consider seeing someone who specializes in epilepsy like an epileptologist. They might be expensive, but if you get on different kind of medication with little to no side effects it might be worth it in my opinion. It's worth to improve the quality of your life.