For the past few years I have been going through medical problems. It started with dizziness and tunnel vision when I would get up sometimes. There were a lot of tests and new doctors and drugs to try to fix it. I was also admitted to the hospital a couple of times. The medication just made it worse. So then I was dealing with getting dizzy at least 7 times a day. With just the dizziness though I was able to go to school and be a normal teenager. During this time, I went to an endocrinologist and he thought that I had POTS so he sent me to a cardiologist. When I saw the cardiologist he did a couple tests and diagnosed me with POTS (postural orthostatic tachycardia syndrome). This was a relief to have a diagnosis because that meant a treatment plan.
Then I got sick for a 10 days with what we thought then was just a flu but now think it could have been a worse virus. I got better from it so I went back to school. I was really tired all the time though and I did not know why. About a week or so later I had a mini stroke followed by non-epileptic seizures. I was taken to the nearest hospital by an ambulance but by then nothing was happening. I was then transported to CHOC hospital where they did more tests. The next couple of days I was there I had more non-epileptic seizures which were all recorded. Since nothing was coming out in the tests they sent psychiatrists to see me to find out if it was stress related or if I was making it up. So they came, evaluated me, made me do biofeedback (which they said I did fabulously :p). They then reported to my doctors saying that I handle stress well and that I was not faking it... WELL DUHHH! After more than a week in the hospital they had me go home, follow up with some doctors, and had me go see a therapist.
Once I was home for a while I started getting: bad stomach pains every time I ate, needle-like pains in my body, difficulties breathing, extreme fatigue, and the tunnel vision I used to get worsened into temporary blindness along with the dizziness and sometimes collapsing. At this point I was not going to school. With all of the new problems I went to many different doctors. I went to a neurologist who did some more tests and she diagnosed me with Dysautonomia but unsure why I have it. She said that with this illness you can have a mini stroke causing seizures due to a lack of oxygen to the brain. As strange as it sounds, it was great to hear this because now doctors can stop saying that I am faking it or that it is all because of stress. Then she said that there is no cure, you have to manage the symptoms. I was now going to multiple doctors regularly to try different medicines or changes in my diet to manage symptoms.
A few months later, things got worse. I had a hard time breathing and talking... to CHOC hospital I went! They admitted me into the ICU and did tests. They diagnosed me with vocal chord dysfunction. There is nothing much you can do about it other than retraining yourself how to talk, at least that's what they said. I was in the hospital for about 5 days and they sent me home. No, I was not better. I was still having a hard time breathing making it difficult to walk and talk. I then was at my follow up appointment with my pulmonologist where they have you do a simple breathing test... I almost fainted trying to do that so the nurse didn't have me do the others. Once my doctor saw me all pale, weak, unable to talk, wheezing, hardly able to walk, and found out about my experience with CHOC he made me go to the hospital that he works at immediately. While I was in the ICU there, I was constantly getting breathing treatments which helped tremendously. Also, he had various doctors see me and do tests to try to figure out why I had those other symptoms. The GI doctor diagnosed me with EOE and acid reflux. This hospital stay was a couple days under two weeks. When home, I was on stomach medication, inhalers, and in-home breathing treatments regularly, but still did not have my voice and barely walking. I was slowly getting my strength back.
There was then another hospital stay due to worsening breathing problems. This was another long stay, which was a total bummer because it was before my birthday. Luckily, they were able to treat me. I got my voice slowly back and since the breathing was better I was able to walk better all two days before my birthday. Unfortunately it didn't last long. I over did it at a fundraiser and landed myself into another long hospital stay. After all these hospital stays I really got to know the awesome nurses (mostly awesome nurses... only had one awful and rude nurse).
With all this symptom treating that didn't work and being in a wheelchair, we were sent to the mayo clinic in Minnesota. This was all out of pocket so we spent a few months raising money. During this time I got to meet some wonderful people. I felt so blessed and loved by God and hundreds of kind people who helped me I was at the clinic for a week constantly doing tests and seeing doctors. The end result was you have a type of dysautonomia, acid reflux, EDS, vocal chord dysfunction, allergies, stop all inhalers, come back for a four week program to retrain your body which is for people with dysautonomia and EDS, and see a genetic specialist where you live to find out what type of dysautonomia you have and to see if there is an underlying cause. I followed all their instructions other than going back for the program since it was $35,000 out of pocket. A few months later I started to have breathing problems again! When I saw a doctor for it, I was put on the inhalers again. After this I had another time of difficulty breathing so I my doctor gave me all the medicines and treatments to do at home instead of going to the hospital.
I am currently seeing a genetic specialist. I have done one test that came back normal, I am now waiting to do another one to see if I have ashkenazi jewish in me. There is no longer a need to see a neurologist. I finished with my allergist. Right now my cardiologist ordered me to have a heart monitor on and I will for the next few weeks until it completes a month. I see the GI doctor Tuesday to stop a medicine since you can't be on it long. Soon I will have to see my pulmonologist and pediatrician for just a regular check-up.
This is all SUPER fun stuff going on. It has definitely all been a challenge but this is my life right now... not forever. I can get through it.
