Today is day 74 of my treatment. In a few days (Sunday) I am heading back to Dallas for my week long follow up with Dr. Kyprianou. This time, my Dad is coming with instead of my Mom. It should be a lot of fun and I am hoping my body is able to tolerate everything! I really crashed and burned this week. Tuesday night, I had to go to the ER and all of that jazz. I haven’t had to do the ER in awhile because typically I am able to wait until the daytime hours and, actually, I haven’t even needed IV fluids since my last trip to Dallas. I am hoping this crash and burn doesn’t hold me back too much! Two things high up on my list to do on this trip are see Fort Worth and the stockyards with my Dad, and I want to go get a manicure with my fellow POTSie who will also be there for her follow up week.
I thought I’d compose some thoughts on my first trip to The POTS Treatment Center and home treatment. I’ve been accumulating thoughts to share on my “notes” app on my phone and in my head. In my current state, I don’t feel like creating a nice, flowy post… but I keep thinking what I want to say on the topic, so I’m giving this a shot in the form of bullet points.
- Something people ask is, “Can any biofeedback therapist help me with my POTS?” My answer is “I have no idea.” I can’t speak to other clinics that may be similar to this one. Biofeedback is not an uncommon therapy. What is uncommon is Dr Kyprianou being a physiopsychologist who conducts biofeedback on a very regular basis (I believe 4 patients per week) for POTS. As with any specialty area in the medical field, finding a doctor who understands POTS is important. A biofeedback therapist who knows nothing about POTS wouldn’t be helpful in my opinion.
- The cost for the 2 week accelerated program ($5,000) includes equipment to do biofeedback at home following the 2 week (5 days/week) accelerated program. There is a program for local patients that is a little less intense as they can come visit the office regularly.
- Ask the office staff for a list of hotels that offer a discount for patients.
- If you can possibly work it into your budget to rent a car, do so! The hotels have shuttles, but the people I saw who relied on them for transportation seemed to be having a stressful time.
- I wish I’d known ahead of time about the “stress-free” rule. No one was supposed to tell me stressful news or talk about stressful topics during my 2 weeks in Dallas. I think she doesn’t tell patients this ahead of time because then the patient would stress about not being stressed (LOL). This rule was sort of tough, but I think a really great rule to have as it allowed me to really focus on treatment.
- No one is supposed to ask the patient it’s going or how s/he’s feeling or what they did that day. Asking this causes pressure especially if it has been a bad day, week, or month. I didn’t think being asked every day how I am feeling effected me in any way other than feeling supported and fortunate. However, after having experienced not being asked quite so much, I realize there is pressure there when someone asks me this. I want to say, “I feel great!” Just rest assured, if your POTSie suddenly feels significantly better one day, you’ll hear about it.
- Dr. K recommends a 1 week follow up a few months after your first visit ($2,000), but doesn’t require it. I am using my last bit of fundraiser money to go there next week. It was a tough decision on whether to save the money to pay for my supplements and other medical costs or not. I decided I wanted to look back and know I gave this program 100%, so I decided to do the follow up. You get sent home with equipment to work on everything each day at home. I spend about 2 hours each days on my treatment. It is quite a commitment! Some people feel better after a few days, some after a few weeks, some after a few months, and sadly, I’m sure some never feel better at all.
- It doesn’t matter the cause of your POTS for this treatment because in all cases, the autonomic nervous system is malfunctioning and the sympathetic system is over activated. Whether or not this is the root of POTS is up for debate, but I don’t think many people would disagree that the ANS is wonky in POTS patients. The ANS is a cause of a lot of the symptoms, so learning to control the ANS into a parasympathetic state, rather than it controlling you, is beneficial regardless of the cause. The idea is the body may still try to activate the sympathetic system, but I will be able to recognize it and control it. Nerve damage or not, you can control your ANS more than you’d think. It may not make everyone symptom free, but I do believe everyone would benefit from having this skill.
- At The POTS Treatment Center, they listen to you. You will be asked what does or does not work for you and it will be taken into consideration. No one will doubt any of your symptoms or what you believe caused them. I explained I hate Splenda sweetener (I think it is toxic) and didn’t want to use the energy product containing it she recommended. Dr. K was fine with this. Ticking clocks drive me insane so the staff happily removed the clocks from the treatment rooms I was in. Dr K doesn’t claim to know it all and is happy to learn as evidenced by her always asking questions. You’ll get much more out of the treatment if you do the same thing!
- The biggest improvements to me are… I no longer require compression stockings and my feet don’t turn purple when I stand (thanks to improved circulation), I have much less joint pain, my back pain is completely gone most days, I don’t get a headache each night anymore, I don’t get lightheaded when I stand (if I remember to take breaths first), my nausea is much less frequent, and gastroparesis hasn’t reared its ugly head at all until the last week. Many days, my brain fog is better. I notice that when I do something to spark a “flare”, if I rest, I stop going downhill whereas before, no matter what I did, I’d crash and burn. Now, if I catch it in time and just take it easy, my body kind of stabilizes. I may crash a little bit, but I don’t typically burn!
- The improvements with the flares and being able to slow them is wonderful, but there is a learning curve. The problem is, my “warning signs” have changed. Due to this, this past week I unknowingly allowed my body to crash and burn. I recognize the crash, but didn’t realize I was burning, so I rested for a day then took off again, and then I crashed again and, trust me, there was no doubt I was burning… and I ended up in the ER.
- What isn’t better? My tachycardia is about the same (still on beta blocker). My orthostatic intolerance isn’t much better most days but I think that will change soon because about once or twice a week it will be noticeably better… At least until I crashed and burned this past week. My fatigue is not better at all really (this is unusual — most people report this lifting early on), my lymph nodes still swell the same as ever, and my throat still hurts in response to physical exertion. My exercise intolerance is slightly better, but not enough for me to get excited about. I think my throat issues, lymph node issues, and severe fatigue issues are separate from the POTS. I do believe my tachycardia and orthostatic intolerance will improve quite a bit so long as I keep up with home treatment. Those are symptoms I went in knowing would take some time to see improvements in.
- There is a Facebook group patients and their family members can join once they start the program. It is nice to have people to compare notes with and just to have people who are going through the same experience.
- Dr Kyprianou recommends some supplements, but is totally fine with medications. She will offer alternatives to some medicines (but not that many really) but say to stay on the medication until treatment is underway and you’re feeling a bit better, then talk with the prescribing doctor. The supplements she recommends are based mostly on what the general population needs to stay healthy, but also will be based on your specific needs.
- The plan is, treatment will slowly take the place of medications. Dr Kyprianou is really knowledgeable about medications and their mechanisms of action (many drs look at me like oh **** when I start talking “mechanisms of action”) and even really obscure supplements. I was pretty impressed. In no way does Dr. K claim her program to to be an instant fix, which I like. As I improve, I will probably notice my medication slowly becoming the wrong dosage (heart rate will be too low/blood pressure will be too high). It’s not like I will wake up one day with a pulse of 40 or something, the idea is I will slowly notice it getting lower and lower and can work with the prescribing doctor to adjust accordingly. It took awhile for me to get this way, so anyone claiming they can rapidly make me better raises quite a bit of skepticism!
- Something I get asked a lot is if I would recommend this center or Mayo Clinic if I had to choose. (Quick memory jog: I did Mayo Clinic in August 2012 and POTS Treatment Center August 2013.) I can’t really give a good answer to this question because everyone is different. What I do know, is I do not regret going to Mayo nor do I regret going to see Dr. Kyprianou. I believe the information I obtained at Mayo Clinic’s Autonomic Clinic is valuable. I wouldn’t know whether or not I suffer nerve damage or other nerve issues if it weren’t from Mayo. I wouldn’t know my norepinephrine levels quintuples in response to standing when it should only double. If I’d done the same testing locally (if that is even possible), I wouldn’t know my testing was done accurately since a lot of the testing is unusual/rare. I wouldn’t have had a group of doctors collaborate and come to conclusions on my case. Having an autonomic neurologist from Mayo Clinic on call is amazing! On the other hand, Mayo didn’t get me back on my feet. The POTS Treatment Center taught me more about how my autonomic nervous system causes symptoms, but I didn’t learn things quite as specific to my body as I did at Mayo. However, The POTS Treatment Center helped me way more than Mayo was able to. I learned how to control many of my symptoms rather than them always controlling me. So, when deciding between the two, it is a tough call and your experiences could be completely different than mine. If resources aren’t an issue, I say do both!