The POTS Treatment Center in Dallas

I am currently working on an article about the POTS Treatment Center in Dallas. If you have been and would like to participate in my survey:
https://www.surveymonkey.com/s/YK7BY59?fb_ref=Default

There is room to share experiences, good or bad.

I am in no way affiliated with POTS Treatment Center in Dallas.

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Medical Marijuana

Medical marijuana is a hugely controversial topic, but it doesn’t need to be! Much of the current research is biased towards finding the dangers of marijuana instead of looking at possible medical use. Researchers who have studied cannabis have found many uses for marijuana (in adults).

MRW no one on Imgur is anti-vaccine but we try to convince them that they're wrong anyway. - Imgur

Where is it Legal?

Recreational and medical use is legal in Alaska, Oregon, Washington, Colorado, and Washington DC. In these places you can get marijuana without a red card, or medical card. However, if you have a chronic illness I strongly recommend getting a medical card. You don’t have to pay as much in taxes and the people who work in medical clinics are even more helpful.

Medical marijuana is largely separated from the medical world. I have never even had it suggested for pain by a doctor. I had to seek it out information on medical marijuana on my own. Some medications have made it through trials and are prescribed, primarily by oncologists, for severe diseases such as cancer. If you are interested I recommend speaking to your medical doctor about it.

One reason medical marijuana is so separated from the medical community is because marijuana is still a scheduled 1 drug. This means it has been found that cannabis “has no medical use”, “high potential of abuse”, and “cannot be safely used under medical care”.

To give you a better idea of what this means, both meth and cocaine are Schedule II. That means these dangerous drugs have been determined to have medical use as well as being highly addictive. I think this is a huge misclassification and agree with John Gettman who pointed out, “Cannabis is a natural source of dronabinol (THC), the ingredient of Marinol, a Schedule III drug. There are no grounds to schedule cannabis in a more restrictive schedule than Marinol”. If we are making medicines from cannabis then how can we say it has no medical purpose?

Medical Marijuana - Imgur

 

Is it Safe?

Marijuana has no recorded incident of overdose. Not only does marijuana have fewer deaths than alcohol, but health costs for alcohol outweigh the costs for marijuana by eight times. Both alcohol and tobacco are legal but are considered far more dangerous than marijuana. A study was done on the link between marijuana and hospital visits. They found that marijuana did not increase the chance of going to the hospital.

Alcohol, and many other drugs, are neurodegenerative. This means drinking alcohol kills brain cells. Research suggests that marijuana may have the opposite effect.

To reach the lethal threshold of marijuana someone would have to consume 1500 pounds of marijuana in fifteen minutes. Therefore, marijuana users don’t have to be worried about overdose. That isn’t to say that all marijuana use is safe.

Possible side effects of marijuana use include dry mouth, paranoia, increased heart rate, tiredness, confusion, or memory problems. Because cannabis can raise your heart rate, I recommend being under care of a doctor if you have POTS and want to try marijuana. These side effects may be worse in people with mental illness.

There haven’t been many studies about medical marijuana and how it relates to driving safety. We do know that people should avoid consuming marijuana and operating any machinery. Driving accidents are a real problem with any drug usage and are potentially the most dangerous threat widespread marijuana usage holds.

As of now, evidence suggests marijuana as relatively safe for adults. However, when used regularly prior to turning 18 marijuana can cause problems. Research has shown that there is a drop in IQ associated with teen marijuana use. There have also been studies that suggest teen marijuana use may lead to memory problems.

hi, i'm dory - Imgur

Pain Management

Doctors are cracking down on drug seekers and those of us with chronic pain are taking the worst hit of all. It is true, many people abuse these drugs. Opiates have the potential for addiction and tolerance is a real problem. Despite these problems, researchers are taking their sweet time looking at marijuana as an alternative pain relief method. Instead of looking into a drug that has been proven beneficial (enough to make medical marijuana legal) politics is getting in the way of researching marijuana more and potentially helping many people.

Surprisingly, I have found that medical marijuana has less of a stigma than opiates (at least in Colorado). I have been to too many doctors with kidney stones only to have them tell me I’m drug seeking and turn me away with no relief in any form. The pain relief you get from marijuana is extremely helpful, but they won’t treat you like a criminal (unless you want to get into the whole federal crime issue). People who work at dispensaries are generally very caring and knowledgeable about their product. They have treated those of us with chronic illnesses with more kindness that most doctors have. They can make great recommendations as to tinctures, concentrates, edibles, and flower. Don’t worry if you don’t know what these words mean; they will be happy to explain them to you.

Cannabis has a lot less of a chance of addiction than opiates. There is a chance for addiction, but not due to physical dependency. Addiction occurs due to psychological dependence. More research needs to be done into the relationship between marijuana and addiction.

 

Medical Purpose

Medical marijuana comes in many forms. There are edibles, smoking, capsules, vaporizing, and now even juicing the plant. What works best medically depends on the type of symptoms or just personal preference. Different strains are better for different things. The two primary types of cannabis are Sativa and Indica. Sativa is more energizing while Indica is more relaxing. Indica is best used for sleep problems and pain. Sativa works best for depression and fatigue. Depending on the strain, both Indica and Sativa can stimulate appetite.

After a study on cannabis from the Institute of Health concluded that marijuana should not be used to treat any disease. However, the study concluded that marijuana can be valuable at controlling symptoms of these diseases. One such symptom is paresthesia. Marijuana is especially good for this “pins and needles” pain where opiates commonly fail. Marijuana also works as a muscle relaxer, and can help with multiple sclerosis, HIV, Tourette’s, and cancer.

While Marijuana may cause respiratory symptoms and side effects, the research that has been done indicates that smoking marijuana doesn’t cause lung cancer. In fact, the opposite is thought to be true. Research in its infancy suggests that marijuana may have cancer-fighting properties. While only anecdotal evidence in humans is available, this could have huge implications on marijuana’s scheduled status. Harvard researchers found that when mice with lung tumors were given cannabis cancer growth was cut in half. Nearly one in four of the mice were completely cured and the remaining saw a decrease in tumor size.

 

Cannabidiol (CBD)

It is possible to get marijuana’s health benefits without getting high. THC is psychoactive, but CBD (Cannabidiol) is not and has more medical uses. Cannabis with high CBD causes less memory impairment due to competition for the CB1 receptor. Strains with high CBD have significantly more medical value than the typical strains used for recreation. CBD is also completely legal in all 50 states without a medical license.

Despite the fact that marijuana may have negative effects on a child’s brain, some parents choose to give their severely ill children cannabis. Charlotte Figi, a young girl with Dravet syndrome (a severe seizure disorder), went from having hundreds of seizures a week to a single seizure a week. Charlotte used a strain of cannabis with high CBD content. There is now a similar strain named after her called Charlotte’s Web. Using strains that have a high amount of CBD and not THC may keep the negative memory and intelligent side effects at bay. Therefore, we may see research suggesting medical marijuana is useful to children and teens.

In addition to helping with seizures, CBD has also shown to have antimicrobial properties. One study found that cannabis may even help with acne. Studies have also found that cannabis may reduce the spread of HIV as well as decrease the risk of developing diabetes.

While cannabis may be dangerous in mental illness, CBD has potential use in mental illness as well. Cannabidiol (CBD) has been shown to work as well as traditional antipsychotics used in schizophrenics. Additionally, there are far fewer side effects in patients who were taking CBD than these antipsychotics. Cannabis also is helpful in anxiety and depression.

 

 

Any drug that has the potential to improve someone’s quality of life should certainly be researched more. Keeping marijuana as a schedule I drug is preventing us from seeing all the potential medical use marijuana has. While many of these studies are small and new, there is definitely hope that medical marijuana will be helpful to treating a variety of ailments.

 

Gardasil Hate

Earlier today a discussion regarding Gardasil began in a support group I am a member of. Many people are claiming that Gardasil, the HPV (human papilloma virus) vaccination, caused their POTS. As a result of the discussion, I began to some research of my own into these claims.

The cause of POTS is primarily unknown. So it is natural for patients to search for what the cause may be. However, these claims have not been scientifically substantiated and it is important they are before we let these claims affect our health decisions.

Correlation is not causation
This phrase is so ingrained in my brain from my first Statistics class that I will never forget it. Basically, just because two things are related doesn’t mean one causes the other. As a kid, my dad used to joke that he didn’t like to eat fruit because everyone who has ever eaten fruit has died(commence eye roll from my sister and I). Don’t worry; he knows this is not actually true. What is true is that there is a correlation between fruit consumption and dying, but it occurs because these are both universal human experiences.
Correlation doesn't imply causation, but it does waggle its eyebrows suggestively and gesture furtively while mouthing 'look over there'. - Imgur

POTS is most commonly diagnosed in women who are young. Gardasil is most commonly administered to young women. So there is an obvious correlation, but can we infer causation? Or is the only link that they are both common in the same gender and age? This same question comes up when people argue that vaccines cause autism. Vaccines usually are given just previously to when autism is diagnosed and people assume causation when it isn’t there.

One reason these claims fail is because they claim vaccines are the cause of autism or because HPV is the cause of POTS. There are children with autism who were not vaccinated. There are also people with autism who were not vaccinated. In the same way, there are people with POTS who never had Gardasil.

I believe the connection between these diseases and vaccines is due to the population involved. The symptoms occurring at the same time may seem like a clear cause for some patients. As S. Blitshteyn said, “It is probable that some patients who develop POTS after immunization with Gardasil or other vaccines are simply undiagnosed or misdiagnosed, which leads to underreporting and a paucity of data on the incidence of POTS after vaccination in literature.” POTS is a hard disease to get a diagnosis for and complicates this further.
If Google was a guy - vaccines. - Imgur

Reactions to Gardasil Safety Allegations
After allegations against Gardasil, the Vaccine Safety Datalink and CDC looked into the adverse effects. They found that all the severe adverse effects were no more common in the comparison groups. (Read more at http://www.snopes.com/medical/drugs/gardasil.asp#O3jC8GFs0WQMUEJk.99). I believe that more research should be done, but that is my feeling on most things.

In the group, I am in the discussion about Gardasil began when someone posted this article:
http://www.sciencedirect.com/science/article/pii/S0264410X15004375. Everyone jumped on the Gardasil hate bandwagon, but I am not sure they actually read the study. In the study it says, “In a population referred for symptoms of orthostatic intolerance and other symptoms consistent with autonomic dysfunction that began in close temporal association with a quadrivalent HPV vaccination, we identified a 60% prevalence of POTS”. Well, let’s take a look at what that result means with less jargon. “For patients with POTs symptoms that started around the same time as Gardasil, they identified 60% of them had POTS”. Is that really even surprising? All they concluded in this study is that people who had POTS symptoms, around the same time as Gardasil, were found to have POTS. The study again just demonstrates a correlation, but not causation.

So is it worth it? HPV
HPV is more common than you may think. HPV causes mouth cancer, throat cancer, genital warts and cervical cancer. HPV causes so many problems that I think people should have solid, scientific evidence before dismissing the vaccine as an effective preventative measure.

hpv-cancer-prevention

I can’t say with any certainty that Gardasil is completely safe, but I can tell you it is certainly not the only or primary cause of POTS. Many patients have not even had the vaccine! Research suggesting Gardasil causes problems are case studies of too small to be statistically significant. I can also say with certainty that HPV if a real problem in human health and that we should be working on preventative measures, ensuring that they are safe, and developing a vaccine that prevents more than four types of HPV. The causes of POTS, as always, need to be better researched and identified.

Wondering if you should trust an article? Here are some tips: https://chronicallyridicilous.wordpress.com/2015/04/14/lets-have-a-little-talk-about-a-thing-called-science/

POTS: 6 Things Sick People Need To Stop Doing to One Another

Support groups are wonderful for those of us with illnesses others just don’t get. No one outside the POTS community thinks jokes about fainting, salt, or compression stockings are funny. No one else can relate to the mortifying events like fainting during sex. Groups on Facebook can be great and convenient, but also hostile and dramatic. I know illness can lead to high tension, but we are supposed to be supporting each other! So here are some things I noticed happening a lot; things that need to stop.

Don't Be A Dick! - Imgur

1. “This cured me; it will cure you!”
Suggestions are more than welcome in support groups, but people often fail to make a very important distinction. Saying something may help or it helped you is not the same as insisting something is a cure. POTS has seen a lot of this because it is under-researched. People insist a workout program, biofeedback, a diet, or drug is the cure for this disease. While we are all incredibly happy that it helped for you please stop getting people’s hopes up! POTS is not caused by the same thing for everyone and there are different types, manifestations, and comorbid diseases. To imply that because you were helped by something everyone will be is incredibly ignorant.

2. “I accomplished _____ through hard work; you can do anything!”
Support groups are about support- celebrating good and bad. So if you graduated nursing school or ran a marathon I will be so happy for you! However, saying “don’t let this get you down” or “you can do anything too” is doing more harm than good. Some people are genuinely limited by the same disease. Not being able to accomplish things like exercising, attending school, or working is devastating. Feeling like you should be able to because others with your condition can is even worse.

So I suggest that we encourage each other but keep in mind that some people are extremely limited. Not all of us can “push through” and run or work again. Being unconscious tends to put a damper on that.

3. “It could be worse”
It can always be worse. It is true, but it shouldn’t affect how we empathize with each other. Someone’s struggle doesn’t have to be diminished by another struggle and seeing someone struggle with something worse isn’t going to make you feel better.

When I find annoying sob stories on the internet, I remember the wise words of Dr House. - Imgur

4. “At least you don’t have…”.
Nuanced from the “it could be worse” in #3 the “At least you don’t have…” differs in one key way: comparing yourself.

I will admit that I have fallen into this before. Sometimes when I see people complain about something that doesn’t seem like as big of a deal I fall into this mindset. I try to remember is that just because I may feel that things are worse for me doesn’t make things easier for the other person. It is still difficult for them! And that is the entire point, they are seeking support, a place where they can complain and relate with others. When we compare our situations to others we are taking that place away from one another.

5. “I would rather have…”

Another form of the “At least you don’t have…” is the “I would rather have…”. I have heard POTS patients in the past say things like “I would rather have cancer.” While I think (or hope) that most of them meant they wished they had a condition that has more research, advocates, and visibility in the media, this is still a massively insensitive thing to say. For many people with cancer it is the hardest thing they have ever been through; they wouldn’t wish it on anyone. For you to say you wished you had it trivializes their struggle. So instead say, “I wish my condition was more visible and researched.” Come on guys.

Could you not - Imgur

6. Attack someone who is trying to understand/help
I see this so often. Someone will post to the group with a question and people will answer with their experiences or opinions. Then everyone jumps down each other’s throats. Experiences and opinions shouldn’t be attacked. Seeking information should not be attacked. Differences in opinion are okay. Just stop attacking each other!

1 - GowPGqI

2 - CZQVKHp

We are supposed to be supporting each other. I know in a group I am part of multiple threads have been taken down due to the animosity in the comments.If everyone stopped saying these six things to each other we could all get along perfectly!

Just keep in mind that we are all different and experiences won’t be the same. Don’t compare experiences or assume they have been similar. Support each other! It is kind of the entire point of a support group.

Let’s Have a Little Talk About a Thing Called Science

When you have an illness that isn’t understood well by doctors it is common for you to have to learn from the internet. Now for those people who haven’t been to medical school (um like all of us) it can be hard to find good, reliable, and clear information. So many times people end up getting their “science” from a wholly unscientific sources. I see patients get caught up in pseudoscience and taken advantage of through these channels.

 

Four Tips to Determine if Something is Scientific and Worth Listening To:

SCIENCE!!! - Imgur

  1. Check the source

Most of the time checking the source is the only step I have to take to determine if an article is reliable. Is it from Scientific American or is it from Naturenews.com. Scientific American is much more likely to be based on science than Naturenews.com. Doing a quick search of the source can tell you whether to even consider the information.

  1. If it sounds too good to be true- it is.

I see this all the time. “Essential oils will cure you!” Anything claiming to cure your incurable disorder should be approached with caution. I don’t deny that certain strange things help some people, but claiming to cure it is ridiculous.

Science

  1. Become an expert on your disorder

If you go out of your way to learn everything you can about your disorder you are going to be able to see what makes sense and what doesn’t. Remember knowledge is power, and it’s especially powerful in this game.

4. Ask someone who knows more

I wish I saw more of this. People will supply information to the rest of their peers without really considering whether it is valuable. This perpetuates the popularity of these pseudoscience myths. Simply asking others, who may know more than you, if something is “real” is incredibly valuable.

With all the changes in the world, it's nice to know that some things have remain the same over the past 75 years. - Imgur

If you use more scientific sources and learn about your disorder you will be better able to contribute to your care. You are going to lose respect from your doctor if you suggest you should try essential oils and they will be less likely to listen to your suggestions. Approach this with caution. Doctors also don’t like when you know more than them. Egotistical jerks.