I had gotten used to the idea that this was just some weird thing I did. I even began to believe I might be doing it for attention, for show. It wasn't until a little German lady, (name unknown, though perpetually blessed for this I'm sure) who found me on the side of the road after a faint, told me in no uncertain terms that this was not normal behaviour and I should fight to get it looked at that I realized she was right. She said what I had thought all along, but had ignored because it was 'just my opinion'. This wasn't normal. I found a doctor who listened to my descriptions and I found a friend who was willing to coach me through the doctors visits. My friend actually wrote down things to tell the doctor, and would debrief with me after doctors meetings. In this way, we worked on my fatalistic attitude, and she became my cheerleader as I returned from one disappointing visit after another. My doctor did finally diagnose NCS with a tilt table test, but failed to explain the full extent of the condition. it was my friend who asked me the pertinent questions, and pushed me to continue to explore my condition. I went to see an allergy doctor, who proved to be the unexpected needle in the haystack. She diagnosed me with Asthma and Seasonal Rhinitis, but most importantly, when I went for my visit, I was on the verge of an attack, my body felt like it was turning to wood, tingling was beginning in my fingers and I felt vertigo taking over. I apologized for this, and told her I'd been diagnosed with VasoVascular Syncope. To my shock, she looked at me and said 'how much research have you been able to do on it?' When I told her I had found very little on it, she told me to look up Neurocardiogenic Syncope and Dysautonomia. Two words that saved my life. I googled them the next day and found a whole community online, complete with descriptions and lists and sob stories. I was so overjoyed I cried all day. I kept calling people and telling them 'it's real, I have a condition and it's affecting my life, and there are other people who have it too!' It was some of the best news I'd received in years. So with this kind of track record, it's not suprising that I still am afraid of doctors. A visit to the doctor will literally give me an anxiety attack. Yet visits to the doctor are necesary in my pursuit of healthing. In my hit or miss experience, I've found a few things to be incredibly helpful in dealing with my fear. Hope they help you!
- Do you homework. Become familiar with the drugs and treatments out there so you can present them to your doctor.
- Be proactive. I meet with my mom once a week to go over practical matters concerning doctors visits, medicine. Its indispensible to have an ablebodied person be involved in your plans so that you don't lose time and valuable appointments because of a bad day.
- Don't cancel because you're unwell if you can at all help it. It helps if they see you at your worst.
- Keep a copy of all your medical records. If you're like me and have traveled allot, it helps to have a complete file on hand, rather than snippets different offices
- Keep a medical history, include major flare-ups, long periods of bad days, anything the doctor can look at to see a pattern
- If after the second visit, you know more than your doctor about what medicines to take, find another doctor. you need someone who is willing to research NCS if they don't have a ready knowledge of it.
- Take charge of what you can. Eliminate as much lifestyle stress as you can. Watch what you eat, the level of activity. Don't be afraid to ask people to accomodate you. keep track of what works and what doesn't.
- Look for a doctor who is willing to work with all aspects of healing. Nutrition, Mental and Emotional Welness. Let's face it, NCS can cause all kinds of life upsets- and conversely is often triggered by Life events. There's got to be a connection there.
- Know what the intent of the question is. Example: depression or feel depressed. I had to learn to tell doctors that, yes, I did feel depressed, but it was reactionary rather than clinical. What this meant was, basically, that over the last few months I'd gone from a fairly functioning adult who met all her obligations and had a good social life, to a hermit who couldn't find the energy to get out of bed to make food for herself for no explained reason. That is enough to cause negativity in anyone. They were looking to lay the blame on clinical depression, so I had to make sure my answer showed that I had thought about it and did not agree with it. (I've tried anti-depression meds. the vertigo they gave me was worse than NCS)
- Have a good support group, and educate them as you learn. My friends know my weak points, and will hold me accountable to keeping a right mindset. they constantly remind me that it's not 'all in my head' and come up with creative ways to keep me going to see specialist. (we bet on outcomes) and are waiting for me after a visit, usually with sushi. After all, if sports teams can have cheerleaders, why not us!
- 'Ask and you shall receive' Ask, Ask, Ask, Ask. I am still learning this. Develop a thick skin, become self-focused, and keep asking questions. always and forever ask. Doctors are there to help us heal. That's their role. They are secondary to the process. We are primary. I didn't just ask doctors, I emailed everyone I knew who had any kind of similar symptoms. I had my mom ask colleagues about hospital visits and friends about doctors. it took a while for me to commit to my own healing (and I did wait too long. The quicker you get help, the better off you are) but now, I am shameless in pursuing health. The quicker I find a balance that works for me, the quicker I'm out of everyone's hair.
