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Symptom Management/treatment And Preparing For Specialist Visit


Sheenar
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Hello,
Allow me to introduce myself. My name is Sheena and I live in the Houston, TX area. I was diagnosed with neurocardiogenic syncope in 2011 by a local cardiologist. I live in an apartment with my Kitty of Doom and work (very) part-time at an after-school center grading worksheets.

My cardiologist put me on a calcium channel blocker (Cardizem --cannot take beta blockers), but it has not helped much in the 2 1/2 years I've been on it. Though it does help slightly as the chest pressure/pain worsens if I miss a dose.

The chest pain and pressure, the dizziness and near-syncope, the temperature regulation, etc. has all gotten worse over time. My cardiologist is at the end of his knowledge/experience in treatment.

I have been referred to a specialty dysautonomia clinic in the Texas Medical Center downtown. My appointment is in July. It is really hard to wait that long when struggling, but 4 months is not a bad wait time considering I have had to wait much longer for other specialists (I have other medical conditions along with dysautonomia --suspected EDS and mitochondrial disease, sensorineural hearing loss, IBS, autism, and other things).

Showering has become really exhausting and difficult. I have a shower chair, but stand during showers --I struggle to hold the detachable shower head to use it to shower. I don't use hot water, just warm --but still showers leave me gasping for air and having to lie down with feet elevated to bring down my heart rate and give me a chance to recover.

I eat salty foods and drink plenty of fluids on orders of my cardiologist. But I am still really struggling with symptoms and not seeing improvement. I tried compression stockings, but cannot successfully get them on myself --even with the special do-dad I got to help with the process.

How did you learn to manage dysautonomia? How did you adjust to the changes it brought to your life? The frustration that things have not gotten better even with everything you have tried to manage your illness?

As an aside, does anyone have experience with the specialty clinic in Houston? What is the best way to prepare for my visit? I struggle with verbal communication and have been having some cognitive issues --especially under fluorescent lights (neurological issues). I plan to write down my questions/things to talk about --but am trying to figure out how to approach/handle the part of actually talking with the doctors and staff at the clinic.
I stutter very badly and slur my speech at times --which impedes successful communication. Any ideas? I am looking at getting a tablet to use AAC communication apps on --just will take a while to save up the funds (I just asked my supervisor at work for a cut in hours as I've been exhausted most of the time --so now I am working 2 days a week --5ish hour shifts --instead of 3 days. I just had my scooter fixed, so have to rebuild the funds. :) ).

Thank you all for this community. I look forward to talking with you. :)

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Hi Sheena,

Welcome to the forum! It's nice to 'meet' you. Though I'm sorry you have reason to be here. Sorry I don't really have any suggestions, I just wanted to say that I feel for you and I hope that you will be able to get the help you need when you see the specialist in July. You've asked some great questions, and I'm looking forward to seeing others answers.

Wishing you all the best,

Lyla

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Thank you for your replies!!

It is hard as I am struggling with symptom management currently --yet still trying to participate in activiites, work part-time, and be involved in my community as much as possible.

I'm going to the Houston rodeo today for the first time. I am not feeling the best (chest pressure/pain, dizziness, 6 hours of sleep), but I've been looking forward to it so much that I'm going to go and pray for the best. I'm takiing my mobility scooter, so I won't be walking around. I'm looking forward to a fun, non-medical-related outing!

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