As I mentioned in my post “My Full Story + Defining POTS”, I had an appointment set to see a neurologist who specializes in autonomic disorders; Dr. Laurence Kinsella in St. Louis, MO. I made the appointment right when I got sick in June of 2023. Initially, the appointment was made for June 2024, however when the time came around, I realized I would not be in St. Louis as I would be living in Charleston for the summer. The issue was that I was set to come back home in May when my sister was home from being abroad as we were both set to fly back to Charleston together. The flight I took in May would be the first time I flew alone with POTS and so we weren’t entirely sure of the logistics regarding whether I could fly again in June. I had only flown twice with my POTS diagnosis before May and I had the help of my parents. I felt pretty sick during and after those flights but they were somewhat easier since I had my parents to help me through the airport and their comfort during the flight. When May rolled around, I was certainly better than I had been the past few times I flew but I was still pretty sick and weary to travel. After all, that whole semester I had stayed on campus and always had access to my apartment and friends for help if I felt bad. The flight ended up being pretty stressful and though I made it through with minimal symptoms other than anxiety during the process, I felt horrible after my flight and had issues for a few days following. Of course, I was so lucky as to run into issues with the plane which delayed take-off and almost caused me to miss my connecting flight. I hate the lack of direct flights home. (side note: direct flights will be available throughout the week via Southwest starting in the spring!) Being stuck in a random city alone with my POTS sounds like a nightmare. So after this flight, I realized I would not be able to fly back to St. Louis only a few weeks later. Getting settled in a new apartment in Charleston was already hard enough. Transitions and being in new places can be really hard for chronic illness. Any change to routine can be very difficult.
That was a bit of a tangent to discuss the hardships of flying. I can proudly say now that I have been able to withstand flying alone much better. After the summer and the fall semester, my anxiety surrounding doing things alone has diminished significantly and my overall health has improved, so while travel days are still a lot for my body, I haven’t experienced lingering effects as bad, at least not for multiple days. All this to say, I ended up moving the specialist appointment to November of this year. I made sure to fly home a few days before this appointment as I would not be taking any chances of missing it. So November 26th rolled around and I finally had my chance. My thoughts leading up to this appointment changed as time went on. When I first made the appointment I thought this doctor would be life-changing and that there was essentially nothing I could do to treat my POTS without him. I was discouraged by the doctors I had seen initially. However, I came to find that doing your own research, hearing from others with POTS, and trialing different treatments that you read about based on what you believe your body needs can go a long way. The doctors I had, though they practically knew nothing of my condition, did listen to my requests to try certain medications and partake in various tests. As time progressed and I realized just how complex and well, chronic, POTS really is, I started to lose hope for my appointment with the specialist. I had read countless stories of POTS Patients seeing specialists, even those at the Mayo Clinic or Vanderbilt, and how it did nothing for them. So many people with POTS believe they are a lost cause. It’s unfortunate that it really is this way for many, especially those dealing with comorbid conditions. An inability to understand and further treat a root cause leaves people partaking in treatments that are essentially band-aid solutions. Treating a complex condition like POTS is sort of a double-edged sword because its dynamic nature makes it difficult for doctors to have a set treatment that works for everyone, but at the same time, there is hope that certain treatments may prove to be very successful for some people, depending on the root cause of their POTS and any other conditions they may have. With all of this in mind, I tried to have a neutral mindset going into my appointment. There was a time when I thought the appointment wouldn’t be worth it since I had already found some sort of treatment. But how did I know that was the best treatment for me? Though it helped me improve a lot, my healing was still pretty slow and the truth was I had never seen a neurologist for my neurological condition. Only cardiologists, primaries, and functional medicine doctors. I had also only been diagnosed with POTS and the possibility of having a comorbid condition was certainly there. I would feel much better just being listened to by someone who knows so much about my condition. That alone would be worth it to me.
The appointment
So it was finally time and I was taken back by a nurse who did my orthostatics. Oddly enough when I stood up my heart rate went down slightly. I was kind of afraid my orthostatics may have been kind of off considering I am on heart medications and therefore my heart rate does not always spike significantly upon standing. Well, this time when she took my heart rate and blood pressure lying down my heart rate spiked (I sort of have an uncontrollable surge of adrenaline when I get my blood pressure and heart rate taken at the doctor or ER likely due to trauma from past POTS episodes where I was very nervous to see my high heart rate and blood pressure) and then by the time I stood up it had passed so it was technically lower but still on the high side. I was very dizzy when I stood up, however. The doctor did not end up being concerned about the orthostatics and said he believed my past orthostatics and considering all of my other symptoms, he didn’t need to second guess my POTS diagnosis. It may seem odd that I would even be worried about my diagnosis being questioned, however, I have heard many stories of POTS patients being told they suddenly don’t have POTS because of their orthostatics at one specific point in time. When my POTS was at its most severe point my orthostatics were constantly indicative of POTS; my numbers well surpassed the 30+ bpm increase each time I just sat up. However now that I am on medications and have increasingly become somewhat better, there are some times when I don’t experience quite an increase in bpm, although there is always somewhat of an increase. This can make it difficult for many people to receive a diagnosis. However, I was fortunate that my past diagnosis was reaffirmed by the specialist and he even diagnosed me with the sub-type I believed to fit me the best. Hyperadrenergic POTS. I discussed the research I had done on this sub-type in the following post.
So, Dr. Kinsella came in and right away I could tell he was a caring and intelligent doctor (yes, that sounds like the bare minimum but as we know in the chronic illness community, this is certainly not always the case, especially when you have a complex condition). He started off by asking me “So, what’s your story?” and I especially liked this question because it was clear that he understood how long and grueling of a journey POTS can be and that there are many different potential triggers for the condition and severities. I believe he understands the diversity and complexity of POTS patients. He was very thorough in collecting and reviewing my symptoms, deciphering the best treatment plan, and whether or not I presented signs of other conditions. As stated in my previous post it turns out I do, and he diagnosed me with Mast Cell Activation Syndrome which has likely contributed to the hyperadrenergic nature of my POTS. He did diagnose me solely based on how my POTS symptoms present along with the GI issues I have dealt with ever since I got sick. I was diagnosed with IBS when it was likely just mast cell issues. Also, my history of mold poisoning and how it seemed to be a trigger for my POTS. I have also had allergy testing in the past and am highly allergic to many plants alongside mold. I received years of allergy shots for it and it did not seem to make much of a difference. My chronic sinus issues prior to the mold exposure were also fervent and I did not find much relief trying different treatments. Thus this is likely related to mast cell issues. I recently remembered some unexplained instances of full body rashes I experienced in high school on and off and again right when my POTS became very severe which I now believe may have been related to MCAS. In high school, for a few months, I had rashes that would be on random parts of my body and never seemed related to anything specifically. At the time, after racking my brain trying to understand what could have been causing it, I ended up attributing it to my allergy shots. Although the rashes did not occur directly after the shot so that didn’t quite add up. Thinking about it now, I have always had “sensitive” skin and have experienced random itching, and at times when I would lightly scratch my skin it would leave raised lines that appeared rash-like and would last a while. Things like this never truly bothered me too much so I didn’t look into them, but I think it’s interesting and may be related to my new diagnosis. As for the instance right when my POTS became severe, that rash was pretty different from what I experienced in high school. I had a spotted rash all over my legs but nowhere else on my body. It covered my legs and was very noticeable. At the time there also was no other explanation for it. I wasn’t leaving my house much as I had just had my first few very scary POTS episodes. The rash appeared mere days after I was bedridden. It eventually went away and never came back but I do wonder if at that time my MCAS and POTS were triggered in full force and the culmination of the severity of it all was enough to bring out the rash. The truth is, I’ll never really know. Both POTS and MCAS can cause so many different symptoms that it’s hard to know if a symptom is related to the chronic conditions or if it’s something else entirely. I am sort of surprised the specialist did not want to order any testing for MCAS. I know there are various tests and I did not think I had enough symptoms to be diagnosed. However, it is sensible to start treatment for a condition if the treatment is inexpensive and easy on the body, even if the diagnosis isn’t 100% for sure. If the current treatment I have started doesn’t seem to make any difference I will likely ask for testing for MCAS before moving forward with other treatments for it just to make sure.
Current Treatment Plan as per the POTS Specialist for POTS and MCAS
The treatment recommended by Dr. Kinsella for my mast cell issues is the following, in part, known as the mast cell cocktail which blocks histamines and stabilizes mast cells:
- Pepcid twice daily (Histamine 2 blocker)
- Xyzal twice daily (I already took Xyzal once daily and it is one of the stronger over-the-counter allergy medications. -Histamine 1 blocker)
- Vitamin D (directly inhibits mast cell activity and reduces inflammation)
- Vitamin C (reduces release of histamines)
- Luteolin (directly inhibits mast cell activity)
- Nasal Cromolyn spray -1 spray in each nostril twice daily (directly inhibits mast cell activity)
As for my POTS, I will continue to take my Corlanor 5mg twice daily along with 37.5 mg of Metoprolol once daily for my heart rate and adrenaline. I have started Zoloft for my adrenaline rushes and my specialist hopes that it will also improve my postural tachycardia so I can eventually attempt to wean off of my heart medications. I would love for that to happen, however, I don’t have much hope that it will be possible for a while. It takes roughly a month for the SSRI (Zoloft) to start working and even then I think it will take even longer for it to make a difference in my adrenaline issues and especially my postural tachycardia. My body has been dependent on heart medication for almost 2 years now and is still very dependent. I missed a dose for the first time ever a few months ago and felt as if I had started over in my POTS journey. However, that is why the tapering off my meds, when my doctor decides it is time to, will be very slow. I hope that Zoloft will lower my dependence on Xanax for adrenaline issues as I don’t like the idea of being on a benzodiazepine as needed for multiple years since I currently need it at least once a week on average.
Positive/Helpful Note: If you have doubts that all of your symptoms are related to one chronic condition that you have been diagnosed with, it is very important to rule out other conditions. Once you receive a POTS diagnosis, it is easy to attribute each new symptom to POTS since it does affect multiple body symptoms and thus causes a wide array of symptoms. However, if you are like I was and have yet to be diagnosed with any comorbid conditions (not that you have to be, although if your POTS is pretty severe and you don’t respond to treatment much, you may need to consider the possibility) and are unsure of new or worsening symptoms, it can be a good idea to ask for more testing or simply explaining your symptoms to a specialist so that can see where things overlap and also contrast from typical POTS symptoms. If you want to see an autonomic specialist, there are only a select few across the US and most are very booked up so make that appointment even if you are unsure whether you will go.
