As you guys know, after a long process I had finally gotten into see the dysautonomia specialist at Vanderbilt. I was so frickin excited to meet with someone who understood this illness and worked with it daily!
While the first visit went ok, there were some problems scheduling tests and we were left with no clarity as to whether my diagnosis was EDS or HSD. But overall it was a decent experience because I got the necessary tests and a treatment plan. So we accepted the commute and decided it was well worth it.
So I went back last month for a follow up and let me just start by saying I will NEVER be returning.
I could barely make it through the appointment without tears. She starting by telling me that physical therapy wasn’t exercise, and that I was lazy and not helping myself. Then, she went on to say that there is no excuse for not being able to keep up with college because her nurse has POTS and makes it to work each day. She also asked me if I was sure I knew how to take my BP.
All of that was hard to hear, but the real kicker was the clinic note posted the next day. First of all, she diagnosed my BP (which gets as high as 180/160) as BENIGN hypertension!!! Then she added as diagnosis of Hypokalemia. Which not only had she never mentioned to me, but my potassium levels, that she ran, were 100% normal. (According to both her hospital guidelines and ALL of my other physicians.) She also has failed to respond to my messages asking about this diagnosis.
Where do you go when what you where told was the best completely fails you?
Not only is my current quality of life largely impaired by this illness, but my future is too. Not having my hypertension under control is leading to organ damage, ( My kidneys, my heart, my arteries, my brain and my eyes are all being affected)
It’s something that needs to be addressed, and is certainly anything but benign.
About six months ago I was connected to a local electrophysiologist who has an interest in POTS. Even though I’ve never seen another patient in his waiting room younger than 60, and he has to refer out to other facilities for certain tests, he has an interest in my case and is passionate about helping. Furthermore, he agreed to see me while dozens of physicals have turned me away because my case is to complex.
This Monday, he told me that I should be proud of my progress. That in the six months I’ve know him I’ve started school again, I’ve been able to travel (even if it is only short distances and for limited time) and I was able to complete the charity walk I was passionate about (even if it did knock me out for days after.)
He pointed out all of my progress and that “lazy” was far from what I was. That even though I wasn’t at a “normal” level of functioning that I am functioning to the best of my current ability, and that I’m doing the work to improve.
That night I cried.
Now I’ve cried a lot after doctors appointments. Hard diagnosis, bad test results, inconclusive test results, meds not working, no clear treatment plan, condescending physicians, all of it. But never, not once, had I cried positive tears because of a doctors appointment.
Not until Monday.
So the specialist that I needed wasn’t the one getting the publicity and grants. It was the one with not only a passion for his job, but compassion for his patients. And luckily for me, I found him.
October is dysautonomia month. I’ve let the majority of the month go by without posting anything because this month has been very hard for me medically, and emotionally too.
In September I went to meet with a new cardiologist. My mother had talked to his nurse and was assured he works with POTS and EDS patients and that he was the one to go to. We both went into the appointment optimistic, and we both ended up in tears.
He was kind, and I think he is probably a great doctor. But POTS is not his specialty, and as such he only sees POTS patients with very classical and/ or mild cases. Which is not me. He was very honest and told me that he was not comfortable seeing me. But he also said that I was the most complex case of POTS he’d seen. He said that what I had was severe and was going to be the rest of my life. He was saying it with the intentions of making it clear that I needed to find a specialist and someone who had a more complete understanding of dysautonomia. But to me all I heard was, you are broken. you are complexly and severely broken. you will be broken forever. and i don’t know how to help you.
But he did help, after coming up with a list of doctors, both local and not so local, and having me go through the list and tell him I was either rejected as a patient or they simply diagnose and don’t treat patients, he got out his cell phone and called his former co worker. He made sure his friend was comfortable seeing me, knowing my vitals and the meds I was currently on. AND he got me into see him the next week.
The appointment with this new doctor went really well. He is confident he can help, and is comfortable working with the doctors at Vanderbilt. He went through my entire medical history and decided to start me on steroids to help increase my blood volume. (I’m at about a 15% deficit) Although I wasn’t thrilled about the steroids and side effects that come with them, for the first time in a long time I was optimistic. I felt like I had a set of doctors that were competent, and almost more importantly, that cared. September ended on such a great note.
Then came October. My EDS has been progressing, which is to be expected. But my pain had been significantly worse and I decided to make an appointment with my PRM (physical medicine and rehabilitation doctor) to discuss pain management. I went into the appointment thinking that we’d talk about different brace options, or something along those lines. But after looking at my vitals, she was alarmed. That day in the office my bp was about 150/100. And looking at my most recent logs, just a couple days prior it had been 160/130.
She talked to me for about 30 minutes. She explained that I needed to prioritize my brain and then my heart. That my heart was obviously struggling, but that I was also really risking my brain. She explained that with those numbers I am an extreme stroke risk. Now I’ve known I’m somewhat of a stroke risk for a while. My friends and family all know what to look out for, and I always take my BP and look in a mirror before I drive. But it has always been it may happen. She sat in front of me and said it will happen. She told me that I needed to stop everything and go back to being on bed rest.
Here’s the thing. EDS does not agree with bed rest. I am in PT at least once a week and do some form of exercise every day to try and protect my joint. In times of inactivity, EDS progresses even faster. And she’s a PRM doctor so she knows this better than anyone, and she was honest in talking to me about it. She said my pain would worsen. She said i’d loose mobility. But she said it was my only option.
I walked out of the appointment and cried in my car for at least 30 minutes. I couldn’t do anything else. I just sat there and balled. I already feel so limited in everything and now this?
I got home and messaged the new cardio, and went to PT the next day just to talk to my physical therapist and get her opinion. She said of course I am at risk, but she thought I needed to talk to my cardio before making any decisions and that she didn’t think bed rest was necessarily the answer.
Three days of panic and heartache went by before my cardio was able to call and talk to me. And thankfully he agreed with my PT that bed rest is not the answer. My blood pressure is crazy, but right now at least once I recognize it’s high I can take a PRN med and lie down and it will correct itself. It’s not ideal, and sometimes I have a hard time telling when it is high, but I’m not constantly living in that danger zone. So for now I can stick with PT and my limited activity. It’s not ideal but it is something.
I then followed up with my PCP. She agreed with the cardio, but also signed a DMV form for me to get a handicap parking permit. I know this seems great. A lot of people have told me how exciting it is that I will always be able to get a great parking spot. But here’s the reality, my doctor just signed a piece of paper that legally says I am permanently disable, and that walking even the shortest of distances is difficult for me. At age 20, that is my reality.
I am attached to my BP monitor. I don’t go anywhere without it. My purse is filled with meds and barf bags. Every moment of my day is consumed by pain or fear. Dysautonomia is horrible. It effects so many people, yet is isn’t well know at all. It takes an patients an average of 7 doctors and 6 years to be diagnosed. 60% of patients are told it’s an anxiety and completely dismissed. This is why awareness is so important. Because those numbers are not ok.
I encourage everyone to learn about dysautonomia, but more importantly to learn that not all disabilities are visible. You never know what someone is struggling with. So be kind and compassionate whenever possible.
It’s been a while since I’ve written anything.
Honestly, It’s been a rough couple of months.
In June, my doctor dumped me. She had been my primary care physician for years. And although she wasn’t the one to diagnosis me, she led me to doctors who could, and fought to get me into see the specialist in Vanderbilt. So after my last appointment, I was almost out the door before I remembered to ask when to book a follow up. And there is was, “I don’t know. I’m always here, but I am rather useless to you.”
I left that appointment fuming! I didn’t understand what she meant, and why she wouldn’t say something along the lines of “I’m uncomfortable with the severity of your conditions.” It was simply “I’m useless to you.”
WHAT DOES ONE DO WITH THAT?! I had already had a horrific experience with the only local POTS specialist, and my current specialist is 500+ miles away, so seeing them more than once a year is unrealistic.
I decided that I needed to find a new primary care physician, that that was the best starting place. If I could find someone knowledgeable when it comes to POTS and EDS that would be an added bonus. So the search began.
Going through a list of doctors offices my physical therapist (Lori, she’s amazing) came up with for me, I called asking if they take new patients. And I was told I’m too old or that the practice isn’t accepting new patients over and over and over and over again. I then called in my mother, because quite honestly I couldn’t take another rejection. And a day later I had an appointment scheduled with a new family physician.
I’ve now seen her twice and she thankfully is comfortable with all my ailments. She’s also working with me to find a local cardiologist as my BP is back to being very unruly.
But that whole process took a toll mentally. I am still coming to terms with my illnesses. I am still learning what to expect. I am constantly learning my new limits. It has not been easy for me, so having a big part of my support network yanked out from under me was very unsettling. Luckily is was just a part though, and the rest of my wonderful supports held me up, and even helped me to rebuild. (Thx Mom and Lori)
So I’m a little late in writing this. My bday was actually in February. But, here goes. Below I’m listing 20 things that I learned by the time I turned 20. (Not in any particular order.)
My life has pretty much been completely taken over by health challenges since June, which if you follow my blog you know. But for months now, there had been a light at the end of the tunnel… an appointment at Vanderbilt, THE place to go for all problems dysautonomia. I was told how they are the best of the best, and if anyone could set me on the right path it would be them.
I’d had this appointment booked for months, I would finally get to meet with someone knowledgeable and that would be willing to work with my local GP on a regular basis following the initial appointment. This was promising enough to travel the almost 600 miles to Tennessee. I was expecting the trip to be hard, as I would have to go off of all my meds before my Tilt Table Test, so I knew it wouldn’t be all sunshine and rainbows. I knew in reality I would probably spend the week getting sick in a hotel room, but having answers was worth it.
Well, it has been almost a month since this appointment, and I really don’t have any answers. My diagnosis sort of changed from hyper mobility spectrum disorder to Type 3 EDS. And by that I mean she wrote EDS on my chart and when I asked if that meant she believed I had EDS rather than HSD she responded in a one line email saying they’re the same thing. (According to the EDS website they are different, but I’m confused and so is my GP.)
They also suggested that I get a plasma volume study, which based on my own research I think could be very beneficial. After the appointment we stayed in tennessee for 4 days, and we were assured they would get us in for the study. Well, on our last day we finally got to speak to the head of radiology who said the drug needed for the test takes over a week to arrive and it wasn’t going to happen. So, the nurse assured me she would talk to her drug rep and get a list of hospitals that do the study. But why wait? We called all the hospitals in VA and not a single hospital does this damn study. We decided John Hopkins would be a manageable day trip, and after getting the orders send, the scheduling department said they haven’t been able to get the drug since December, and that they weren’t going to schedule us. So now, it’s a month later, and the nurse from Vanderbilt finally responded to my email, where I asked if the drug rep ever got back to her by saying “the dr. is aware you won’t be able to get the test in the near future.”
At this point all that this trip has given me is a loose plan of possibly switching meds, that seems like it will be more detrimental than anything else. Some lab results that are alarming. (Who knew norepinephrine levels could get so high!) And a lot of lost hope. The light at the end of the tunnel has dimmed.
Sure, I have good days. But I also have days like yesterday where I ended up sitting on the floor in the middle of Victoria Secret with my BP 171/135 debating whether or not I should go to the hospital.
It seems very doom and gloom saying that the light has dimmed, but it hasn’t shut off. There still is a light, and it’s brightness depends on the day. But it is definitely still there. Primarily lite by my family and friends that are always there.
I’m fairly new to my diagnosis of hyper POTS and HSD, so the prospect of a Disney trip was almost as worrisome as it was exciting.
Disney is know for its long wait times, and for a POTS patients standing for even a minute can be hard. The heat can also be an enemy to dysautonomia patients, and long days don’t go well with chronic fatigue.
But all that aside, Disney can be an amazing experience. I’ve put together some tips and tricks to make Disney manageable with a chronic illness.
Most dysautonomia veterans already know what a huge different compression gear can make. Not only does it help with blood flow, but for me it provides a little bit of security for my loose joints. Even though the heat may deter you from wanting to wear it, I suggest you try. The pros may outweigh the cons. If it is just too hot, you may want to consider sleeping in them to help with recovery.
Most days the parks will open at 8 or 9am. If you can be at the park by rope drop, you are almost guaranteed an hour or two of little to no wait times. (It’s smart to save your fast passes for the afternoon/ evening as the lines are always longer)
This one is definitely the biggest. Disney has a disability access service, that works similarly to the fast pass system. If you have any sort of disability that makes it difficult or prevents you from waiting in a standard line, you can request this service.
There is no need to provide documentation or try to explain your condition. Just simply head to guest services and ask to set it up. The employee will take a picture of you, and ask for all the members of your party to scan their magic bands so that they can be linked to the pass. It’s that easy to set up, it took me less than 15 minutes. (line included)
When you get to a ride, simply tell the cast member that you want to use the disability service and they will give you a return time. This time is based on the standby line time. You can then go do something else, perhaps find a cool place to sit, and return at the assigned time. You scan your magic band and go through the fast pass line.
You also don’t have to worry about brain fog and forgetting your return time, as it shows up in your My Disney App-
It’s important to know your limits. Don’t try to push your self too hard. For me I did 4 hours in a park, sat down indoors for lunch, and then went back to the hotel for 2 hours of rest (with elevated feet) before trying to return to the park for the rest of the day.
Having time away from the heat, and with your feet up can make a huge difference. I also took the time at the resort to use my TENS machine, to lower the pain caused by walking all day.
It can be hard to get day of reservations at Disney, and a majority of the quick service restaurant seating is outdoors. Meals can offer an important respite from the heat, so I suggest making reservations in advanced. This also ensures that you are guaranteed a break in your day.
HYDRATE! HYDRATE! HYDRATE!
I cannot stress this enough. Disney allows you to bring in your own food and beverages, so if you can bring a water bottle. If you didn’t pack anything, don’t worry. Any quick service restaurant will give you a free cup of ice water if you ask, so don’t feel like you need to buy the expensive bottles. A majority of the restaurants offer powerade as a beverage option, which is a good option. I also packed propel packets and added that to a glass of water with every meal.
I was just at Disney for 5 days, and these tricks made a HUGE difference, so I hope that they can bring you some success too!
My last blog was months ago, about being diagnosed with hyperadrenergic POTS in June. Since then my life has been full of doctors and mainly centered around my health.
I was briefly on bed rest, due to an incredibly high resting heart rate and hypertension. But in September I was luckily able to start physical therapy and work towards a more active lifestyle. Although this was a major accomplishment, it uncovered some problems.
After my first PT appointment I was in pain, but attributed it to just being sore. However, it continued and the pain got significantly worse. My hips, my knees, my shoulders, my back, it seemed like every part of me was hurting. My physical therapist started to notice that as I was doing simple exercises, some as easy as straightening my leg, my joints would sublux (which means my joints would begin to, or partially dislocate)
So last Monday, I got in to see a geneticist. I had never thought of myself as double jointed, or flexible. Apparently I was wrong. Hypermobility is measured by the Beighton Scoring System, which is scored on a scale of 1-9. I scored a 9, and in my doctors words, a high 9 at that.
My diagnosis is still a little confusing to me, but I have hypermobility spectrum disorder, which is a connective tissue disease. Here is a link to a website that has some info: https://www.ehlers-danlos.com/what-is-hsd/
2019 has now brought me two chronic illnesses! But luckily, with a diagnosis, I am able to start working towards finding the right treatment. One thing I will never take for granted again is having a medical provider who is well versed in the conditions that I have, or at least willing to learn. Through all of this, the hardest part has been finding someone to treat me.
Right now, I still haven’t found a doctor locally that has an expertise in dysautonomia, so I’m struggling with treatment, and simply understanding my illnesses to be honest. But I hope that with my continuing research I will find the answers I need.
Thanks for reading, sorry it’s not the happiest of posts-