Today in Rare Disease Day, and in lieu of that I wanted to try and clear up some misconceptions about my rare disease and raise some awareness about it. My disease is Postural Orthostatic Tachycardia Syndrome or POTS, it falls under the blanket diagnosis of Dysautonomia. Basically POTS is a malfunction of the autonomic nervous system, this nervous system controls all bodily functions you don't think about such as heart rate, temperature, digestion, blood pressure and many more basic functions. Due to the vast amount of things that the autonomic nervous system no two cases of POTS are the same and two people with the disease may experience vastly different symptoms. The only symptom that all POTS patients have is an excessive raise in heart rate upon standing, as well as drops in blood pressure.
At this time there is NO cure for POTS or any form of Dysautonomia, and it is especially hard to find a doctor that is well versed in the disease as it is not taught in medical schools as well as nursing schools, due to the disease being discovered in 1993. Most of the time I being a patient with POTS am more knowledgeable than my doctors about my disease.
Along with there being no cure for POTS or any form of Dysautonomia there is not treatment for the disease itself. Yes there are thing I am doing for my POTS, but treatment is considered something that can potentially put a disease into remission or heal the person completely. For example chemo is treatment for cancer, surgery is treatment for appendicitis, but when it come to POTS all the doctors can do is treat the symptoms the disease is causing, not the actual disease itself. This means the doctors can not stop the progression of the disease, and there for more symptoms can pop up. Below I am going to make a list some of my symptoms and what we are doing for them if anything at all.....
My Symptoms
- Nausea (Nausea Medications and Feeding Tube)
- Low Blood Pressure (Blood Pressure Medication)
- Headaches (Migraine Medication)
- High Heart Rate (not being treated)
- Body Wide Pain (not being treated)
- Passing Out (IV fluids)
- Random Fevers (Tylenol)
- Fatigue (not being treated)
This kind of shows what is typical for "treatment" in a POTS patient, all the doctors can do is mask the diseases symptoms, but nothing that is being given to me as a "treatment" will ever be able to actually get rid of the POTS or treat the POTS directly, even when I am going to be able to see a specialist in Dysautonomia there is no magic fix.
POTS Facts
- About 25% of POTS patients are so disabled by the disease that they cannot work or attend school.
- Some POTS patients get better over time, while others, stay the same or get progressively worse.
- Eat causes the body to redirect blood flow to the stomach to aid digestion, this can cause POTS symptoms to worsen, sometimes even causing passing out.
- People with POTS have around the same quality of life as a person with COPD and Congestive Heart Faliure.
- It often takes years for someone with POTS to receive a proper diagnosis
I've been following your blog as I also have dysautonomia (from a genetic disorder). Have you heard of post viral POTS? Your story sounds a lot like it, there's also autoimmune types of dysautonomia. Post viral can be cured and there are treatments for autoimmune types of POTS. Dr. Blair Grubb is practicing again (he took a break after his wife passed away) he is the best in the country and cured a friend of his post viral POTS. Dr. Fortunado is a G.I doc that specializes in motility disorders caused by POTS, he is hard to get into but he is a wonderful doctor. Good luck, I hope you find the right combination of things to help you soon.
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ReplyDeleteI am 24 years old and I was just diagnosed with POTS as well, and my symptoms began about a year and a half ago. My worst symptom has been excruciating nausea and vomiting (though I do have all the ones you listed above). I have lost 55 pounds, and am still struggling to maintain my current weight. Luckily I have been able to avoid the feeding tube route by trying out a few things I found online. Anyway, I wanted to tell you about some of the things that have really helped me.
1) for the nausea, try marijuana. I know it sounds crazy, but honest to god, it's the ONLY thing that remotely works. --zofran and phenegren don't help in the slightest.
--- also ask your doctor about a scopolamine patch. It's tiny and just sticks behind your ear. It also helps me a lot.
2) Above you mentioned whole body pain - marijuana also helps this. Ironically, light non-impact exercise has also helped my aches and pains (cycling, swimming, etc).
--- my doctor also diagnosed me with ehler's danlos syndrome (EDS type 3). Basically it's an autoimmune disease that is often linked with POTS, and it causes whole body aches and pains (due to over flexibility in joints). It affects mostly women, and like POTS, is extremely under-diagnosed. It might be worth mentioning to your doctor.
I say all this because of something that happened two months ago:
I was going through a bad spell with the POTS (worsened symptoms), and became severely dehydrated (due to lack of eating and drinking). I was admitted into the hospital, where I was given a gallon of IV in the ER. Because of my weight and level of nausea, they admitted me into the hospital. During that time, they gave me countless nausea medicines through my IV - zofran, phenegren, you name it. Even a benadryl cocktail to allow me to sleep. Anyway, nothing helped. At all. Due to being in the hospital without my medicine (marijuana), I was actually becoming sicker. Of course the IV helped heaps, but passed that I was just getting worse. Long story short, I lost more weight in the hospital, and was sicker letting them fill me with all kinds of medicines.
Oh and also, the MJ gives you the munchies. It's the ONLY time I am able to eat. It's the only medicine that helps me, and it's helping me to avoid the hospital. Try it out, and just see if it helps. It's my miracle.
Lastly, I noticed you're on quite a few medications. Does this not make the nausea worse? I have found that my nausea is so severe that I can't take medications like that - I vomit them right back up. And also be aware of the side effects of those medications - they could be causing or exacerbate your POTS symptoms.
Hope this helps, even in the slightest. Good luck on your journey! Know that there are others, like me, going through the same thing. We WILL get through this.
Emily
I believe my daughter is battling POTS currently. Have you received any outlook on potential treatments and or cures?
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