In my previous post of NCS and me, I talked about the onset of my symptoms and the journey through wondering if I was going to die and even just figuring out what these new symptoms were. They were debilitating and came on suddenly and left just the same. I left off being referred to a new Neurologist at John's Hopkins Headache Clinc at Bayview for assistance because my primary complaint was a blinding headache. I was introduced to a wonderful doctor who did not offer me one drug! I instantly was in love. I have been offered more drugs that should have been legally allowed and refused to take most of them. I had doctors who lost interest because they could not find the "big bad" thing that was causing my concerns. I knew that I wasn't crazy and that was about the only thing that I was sure of.
My new doctor specialized in Cerebral Spinal Fluid leaks. After listening to my history he decided that should I be hospitalized for a few days. During my stay he wanted to test my cerebral spinal fluid levels and see how or if they changed based on my body position. I already had a few spinal taps (WORST EXPERIENCE EVER one notch bef0re that eye sonogram) under x-ray guidance and they were torture. I actually blocked out most of the experiences because they were THAT bad. This time I was given something similar to an epidural and they would test the fluid levels from the inside. I was there for two days and the machines did show that the pressure went down drastically when I was upright. As soon as I sat up I felt completely drained of all strength and I felt like I was going to pass out right then and there.
They found that I had one leak from the test site and one that opened spontaneously. To fix this I was given a blood patch. Oh yeah, this was horrible too and made worse because the man did not know what he was doing! I tried to remain calm but this was bad. For those who don't know. A blood patch is when they take blood out of your body and then inject it in your spine hoping that the blood will clot and seal the hole. A more experienced person came and sealed it in one try. I promised If were to have anymore children I would name him or her after that man. Did I say that it was bad?
I still experienced bad headaches upon being upright and felt much better when I laid down. My new Neuro didn't think that CSF leaks were my problem and this is where Dysautonomia makes it's appearance. He took me to a Cardiologist at Hopkins and I was scheduled to have a Tilt Table test. I didn't know what it was about only that it was to test my heart functions safely. I knew about the stress test and a nuclear test but not a Tilt Table test. I literally was strapped to a table like you saw Frankenstein's monster in the movies. The table was tilted forward at almost full standing level and then they waited measuring my heart rate and blood pressure during the exercise. I was in an out of full consciousness and partly confused but my curiosity kept my alert. After this bit of torture I was told that I had borderline POTS (Postural Orthostatic Hypertension Syndrome), given a massive packet on it and prescribed salt tablets. When I went out to my family,who patiently waited for my return, I announced that I was a mule and I was prescribed a salt lick! So salt would help increase my blood pressure and I would get better. Still no real meds from the Neuro.
I continued to have bad headaches but I improved overall for a while. I was eventually diagnosed as having Basiliar Migraines and I was given medicine for that and eventually a cocktail to help break my headache. This experience told me that I can't have Reglan AT ALL. Allergic reaction unrest and pure madness ensues. I simply can't have it. At this time I took that huge packet on POTS and I looked it from time to time but I didn't receive any more feedback. I told my Primary doctor and he didn't flinch. He just said that it was above his pay grade but didn't offer much else that was helpful. A full post on my experience with doctors is coming as well. A few more years went by and I continued to suffer from my symptoms at cyclical intervals. They were: nausea, some vomiting, loss of appetite, headaches, problems being upright, lightheaded, dizzy, near fainting, weak, vision problems, issues with light and with noise.
These would come on suddenly and then leave just as fast. I scoured the internet for people like me because I knew that I couldn't be an anomaly. I found a blogs and tumblrs but many stopped years before possibly due to the severity of the owners conditions. Even now, the few I follow are updated so sparingly because of their illness(es). Still I was given enough information and breadcrumbs that lead me to the term Dysautonomia and to groups and websites dedicated to people just like me. One such place was Dysautonomia International. They had tons of information on POTS not as much on Neurocardiogenic Syncope. However, they had a map that showed doctors all over the world that help people like me. That is where I found my doctor and I took the leap of faith and I called his office. Yes, he was accepting new patients but it was a nine month wait for that appointment. At this point I suffered for seven years so nine more months were a real drop in the bucket.
My only hope was that I would be symptomatic because I would have issues but I couldn't predict when they would subside or reemerge. Doctors need data and I wanted to give him data. When my appointment came after I waited those nine months I was thankfully symptomatic and my doctor listened with a smile for my two hour appointment. He wrote down every little thing that could remember about life before symptoms and life after. He took my blood pressure and my vitals real old school like with the reflexes and everything. For the first time in years someone listened. He listened intently and with curiosity. Did I mention that he deals with Autonomic Dysfunctions?!? He is also the head of Neurology at his hospital too. My doctor (neuro#3) didn't tell me what he thought but he assured me that I was not crazy and I was not alone. He didn't compare me negatively to his other patients by dismissing my young person's problems when he had patients far worse, like others had. Instead he shared similarities between his patients and he believed me. My new beloved Neuro#3 scheduled autonomic testing to give me a true diagnosis and he did not prescribe me a thing.
This post is already long so I decided to call it Part 1 of my diagnosis and I will follow up with my Autonomic Testing details and what followed there after.
One day at a time.