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My Story & Looking For Suggestions


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I really do appreciate those of you who choose to read my story and offer your input. There are very few people that understand the hardships of dysautonomia, and the more information I can get about the complications and details of dysautonomia, the more likely I am to make a more complete recovery in the near future. Thanks so much.

I'm sure there are plenty of other people on here with very similar stories to mine, but I thought I'd share mine in hopes that someone may be able to offer me advice or point me in a medical direction that I haven't yet explored. I'm an eighteen year-old college student from Baltimore, MD who was recently diagnosed with POTS. My journey with this condition started back in August of 2017 (which is comparatively recent, and I know that I'm very lucky), when I seemingly out of nowhere started to feel lightheaded, as if I was in a constant daze. This sparked a tremendous amount of anxiety, not only because I didn't know what it was, but because I was supposed to go off to college for the first time merely two weeks after my symptoms began. I decided to ignore my symptoms as best I could and go to college in hopes that the symptoms would pass on their own. For the first few weeks, life was livable. I was able to go to my classes, and while the nagging lightheadedness was present, it wasn't debilitating. Then, one day when I was walking through campus, I suddenly started to feel like I couldn't swallow. This was followed by a burst of lightheadedness that made me feel like I was on the verge of passing out. From this point forward, my strategy of simply ignoring my symptoms and going about my daily life no longer worked.

The first thing I did was schedule an appointment with a neurologist at Johns Hopkins Hospital. The neurologist I saw did a thorough physical exam and concluded that I was suffering from something called PPPD, or Persistent Postural Perceptual Dizziness. I was hesitant to buy into the diagnosis at first because it seemed vague and somewhat undefined, but I eventually subscribed to the doctor's orders. He prescribed me an SSRI and told me to do daily 'ball tossing' exercises to get my eyes and brain back in sync. As soon as I started taking the SSRI (Zoloft), I started to feel completely off. My mood became depressed and I didn't feel any sort of symptomatic improvement. When I told my neurologist this, he told me to stop taking the Zoloft, so I did. At this point, my neurologist told me he was essentially out of ideas and mentioned going to the Mayo Clinic in Minnesota for further evaluation. As a sick college student struggling to juggle his symptoms and academics, I wasn't even willing to entertain the thought of going to the Mayo Clinic at the time. My symptoms were and still are lightheadedness, fatigue, concentration issues, memory issues, shortness of breath, exercise intolerance, photophobia, muscle twitching, headaches, vision disturbances (floaters, spots), excessive involuntary muscle cracking, a frequent flu-like feeling at night, and morning joint pain. 

I saw a neuromuscular specialist to see if the muscle twitching, which was and still is all over my body, had anything to do with my other symptoms. She concluded that they are benign. The next thing I did was see an ear, nose, and throat doctor. When I mentioned PPPD to him, he firmly disregarded it as a 'catch-all, wastebasket' diagnosis for when doctors 'don't know the real cause of the problem'. As difficult as this was to hear, I already knew this was the truth in the back of my mind, so it wasn't that crushing. He examined me, ran a few tests, and determined that my inner ear was in-tact and nothing was wrong as far as he could see. He suggested going to see an otolaryngologist at Johns Hopkins Hospital for further examination, and so I did. The otolaryngologist said he didn't see anything alarming, but ordered an MRI with and without contrast to make sure, once and for all, that my brain was ok. The MRI came back unremarkable.

Around this same time, a friend of mine from college began remarking that my symptoms were really similar to what he experience during high school. He had gone to the Mayo Clinic and was diagnosed with POTS a while back. He suggested seeing a specialist, so I scheduled an appointment with Dr. Hasan Abdallah in Herndon, Virginia. He and his staff were wonderful to me and put me through a series of tests to try and determine what was wrong with me. My blood test indicated that I was Vitamin D and Iron deficient, so I began taking supplements of each. After the testing was over, Dr. Abdallah told me I had Inappropriate Sinus Tachycardia (IST) and prescribed me Metoprolol 25mg to be taken twice daily. I started taking this, but didn't see any symptomatic improvement, though my heart rate and blood pressure decreased as expected. Dr. Abdallah prescribed me Effexor 37.5mg and Adderall XL 10mg to no avail. Eventually, I started taking a once daily inhaler (Advair Diskus) each morning to try and increase my lungs' oxygen intake. According to my stress test, my oxygen levels were low. Similar results appeared during my tilt table test, so I was very hopeful that the inhaler would make a big difference. Dr. Abdallah also gave me an Albuterol inhaler for before exercise. At this point, Dr. Abdallah and his office started referring to my condition as POTS rather than IST. 

I started taking the inhaler right around the time that I was about to return to college after a three month medical absence. When I got back to school I was far from perfect, but my symptoms were significantly diminished. I was so hopeful that we had found a solution that worked for me, and I went about my business at college for about a week with only one significant symptom flare-up. My recovery was short lived, however, because after about seven days of feeling somewhat better, things took a turn for the worse. When I was walking through Walgreens, I started to feel like I was on the verge of collapsing. I didn't faint, thankfully, but it was scary. My symptoms started to creep back shortly thereafter. Dr. Abdallah's office had prescribed me midodrine the day before, so I was eager to see if that would help. After taking it for the first time, I only felt more dizzy than I had before. I also woke up in the middle of the night only to find that my heart rate was jumping from the 80s to 130s while sitting down. This was a pivotal moment for me and began to make me feel like the relief I had felt just days earlier was all in vain.

That incident with the midodrine was only a few days ago. I'm at a bit of a crossroads now because I don't know what I should do when it comes to all sorts of aspects of my life. I'm not sure if I should go back to college because of how unpredictable my symptoms seem to be. At the same time, I'm afraid of missing out on even more time at college while my friends and peers get ahead of me academically. Medically, I'm not sure if I've found the right solution. I thank God every day for the care that Dr. Abdallah and his staff have shown for me and am interested to know if there are any other specialists you all have seen to help manage symptoms and determine the root of the problem. I only ask this if you think there may be something non-POTS related contributing to my symptoms. When it comes to dysautonomia, Dr. Abdallah knows his stuff and I don't need to see anyone else. 

Have any of you dealt with the symptoms that I've been experiencing, particularly the light sensitivity and muscle twitching? Do those of you who have been through this sort of situation before suggest I go back to college? Are there any more medical measures available? What medications have worked for you guys? Please feel free to share your thoughts and advice no matter the nature of your comments. You've heard enough from me. I'd really like to hear from all of you.

P.S. - I had Lyme's disease when I was younger, but it was treated with antibiotics at the time. I've heard that chronic Lyme's can reemerge and spark dysautonomia. How can I determine if this is the case for me?

Thanks.

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I don't have any great wisdom for you but I can completely relate to that "there's something we are missing" feeling combined with "I know this doctor knows his stuff". I am sensitive to light and sometimes I do get weird twitches, but those aren't a big part of my issues.

 

I had low iron and vitamin D and vitamin B12 myself. I was happy to find something fixable but in all honestly restoring those levels hasn't helped much  

 

I also have to say that I am, unfortunately, completely familiar with that "oh great, I have a solution, I'm getting better, this intervention is helping!" And then 4 days later ending up back in the same spot ON the "miracle" med. It's a massive letdown and scary when you realize there isn't much more to add and this is your new baseline.

 

i don't think midodrine has changed my heart rate for the worse, in fact, when I need it for hypotension, it brings my HR down a bit. I also take metoprolol and pyridostigmine in this realm and I am now getting IV fluids at home when things are bad. I hope we all find some missing link!

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I have no great advice regarding your symptoms but I know of several people in your age group that experienced similar things. A neighbor's daughter had Lymes disease right after graduating High school and she had POTS because of it she had to take a year of, recovered (for the most part) and is now fine ( 6 years later). I also know of a young woman who just graduated nursing school and has a lot of problems with syncope and was diagnosed with POTS. She began having symptoms during school but was able to graduate. Maybe your Doctor could be helpful in determining what is realistic to expect in your current condition? I hope you find guidance and answers. I can relate - probably most on this forum can. If you have a good doctor that understands what you are going through is real - that is so important. If it is dysautonomia then it often takes a long time of trial-and-error before the right meds for your symptoms are found. 

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Have they done a full Rheumatology panel? Is your ANA still positive? With your O2 dropping, did they do a PFT and if so, what was your DLCO score? 

Been there and done most of it too. Mine started in high school but worsened in college.  I'm older now and still working on answers.

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My problems began at a much later age but one thing you mentioned stuck me. I haven't heard it mentioned much but at the beginning my joints, bones would pop like crazy when I rolled over in bed.Especially my head,neck upper back area. It was the least of my worries and eventually resolved on its own but found it very strange. I believe young people have a great chance of a full recovery but it still takes some time. Could you begin with a reduced schedule, only one or two classes until you have things in hand? I am wishing you all the best!

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