New Doctors, New Treatments

As I wrote in my last post, it’s taken me several months to recuperate from my attempt to work a part-time job. While I was on the right track for the last couple of years after being bedridden with undiagnosed POTS, severe migraines and other symptoms stemming from EDS, I set myself back pretty good by attempting to work only a few hours a week as an Uber driver. While I may never be suited to this kind of work given the particular challenges of these conditions, I would still like to be my healthiest self and try to achieve the most productive life possible despite my many conditions. I would also like to live as pain-free a life as possible; a tricky proposition for someone who suffers chronic pain, but can’t tolerate most pain relievers. Luckily, my recuperation is going very well, and thanks to some new strategies provided by new doctors, I feel like I’m on my way to even better health than before my setback.


What a relief it is to have finally found a group of doctors who actually “get it” after nearly 20 years of searching for answers almost entirely alone. I finally have the correct diagnoses, doctors who have taken the time to study and understand these illnesses, and just as importantly, take the time to listen, BELIEVE and actually address my problems. What a world of difference this makes. Within the last 6-9 months, I have found a new primary care physician, headpain specialist, physical therapist and urogynecologist. Add them to my already great vascular cardiologist and I am already well on my way to better health.

My headpain specialist, who happens to be world renowned, seemed to know right off the bat exactly which drug would finally bring me peace after a decade of severe and debilitating migraines. I’ve been taking topamax since around 2010, however it’s never prevented the migraines completely. It just prevented them from being non-stop, bone-crushing, puking every hour, hide from the world under blankets kind of pain to being almost tolerable. Aside from topamax, I’ve tried approximately 10 other medications. No one ever tried verapamil or a similar calcium channel blocker, however but this doctor looked at the whole patient, my POTS, and understood that my migraines were likely vascular in nature. At 240 mg per day, my migraines went from 3-5 per week to just 1 a week. A couple of weeks ago, he upped my dosage to 360 mg, and I’ve been migraine free for 12 days, despite having dropped my topamax dosage from 75 mg to 50mg over a month ago.

Verapamil or another calcium channel blocker like it should probably be one of the first drugs tried for anyone suffering from migraines and dysautonomia of any kind. Not only does it help to regulate heart rate, but it’s been shown to be incredibly effective against vascular migraines with few to no side effects, according to this and other studies I have found. Topamax has no end of side effects that I’ve put up with for years because it was the only thing that brought me a modicum of relief. Just by decreasing my dose by 25 mg, I feel calmer, more energetic, my food tastes almost normal and I’m not suffering such severe dry mouth. I will definitely be attempting to wean myself from it soon.

I chose my new PCP in part because I was told he was being trained in how to care for Ehlers-Danlos patients by a well respected PCP in this area as well as my headpain specialist and I picked a winner. He’s already helped me a great deal by helping to properly adjust my meds, submitting a referral to a geneticist for further exploration of my EDS type, getting me connected with an excellent urogynecologist to address ongoing pelvic floor issues, and getting me started with a great physical therapist. I don’t have to argue with him, bring him research to prove I know what I’m talking about or deal with being treated like a hysterical patient when I question the safety of a drug he’d like to put me on. He also took an MRI of my lower spine to confirm that my incontinence issues were not related to my spinal deterioration, and since it would all take a while, he went ahead and prescribe me oxybutinin to help prevent anymore accidents while I was getting the help I needed. This all proved to me he’s a thorough and thoughtful practitioner.

My urogynecologist is a hoot. He’s a very good doctor, but relaxed, funny and easy to talk to, qualities I really appreciate in someone who spends a lot of time checking under the hood, so to speak. And he too seems content to treat me as a whole patient and not just a conglomeration of body parts located below my waist. He was even well versed with FODMAP issues and helped me to decide that fiber was a piece of the puzzle I had been missing in achieving better gut health and bathroom success in addition to needing pelvic floor therapy. He even had my records from my hysterectomy transferred in so he can determine exactly what they found as I never got a good explanation out of the surgeon and he agreed it could inform my future health. I’m looking forward to seeing what he has to say about it.

I’ve saved my physical therapist for last because I feel like this lady is really something special. I’m seeing her for pelvic floor therapy, but she’s truly taking a holistic approach to my therapy. Yes, she’s treating my pelvic floor condition and doing a great job of it, but she’s also working her way out from there, ensuring that what I do for my strengthening exercises are safe for my collagen depleted joints and muscles to handle, that I’m staying inside what is considered a “normal” range of motion and that I’m not doing too much. She’s also showing me how to modify exercises for good days versus bad days so that I don’t have to take days off and lose momentum (something I never contemplated, even though I’m endlessly frustrated by constant setbacks). She does this by giving me three different versions of the same exercise to do, only they have different levels of challenge. I can not only work my way up if they’re too challenging now, but do the easier ones on bad days. In addition to that, we’ve begun working on strategies to ensure I’m doing housework and lifting safely to protect my back and joints. Talk about a holistic approach! I LOVE HER! I look forward to adding some of her wisdom to my exercise posts.


3 thoughts on “New Doctors, New Treatments

  1. Wow. What a wonderful report on doctors.

    We’re moving, but I switched cardiologists – to another in the same practice – and it is night and day. I had picked a woman, thinking that would be a good idea, but she turned out to 1) be aggressive in wanting me to take meds, and 2) completely lacking in the right kind of empathy. “Yes, I hear you, but do it my way,” doesn’t help. The new guy is a treasure I will miss. He took me off everything, told me not to take my blood pressure at all, and explained that evening spikes might be due to me needing a fair amount of salt to keep my blood volume up for the CFS. So I’m exploring moving the salt earlier, and it’s working – plus the stress has disappeared. I was so afraid to change doctors – and be labeled a ‘difficult patient’ – but it was exactly what I needed.

    Good luck going forward. You are indeed blessed to have found these, and have them actually talk to you and each other.

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    1. I really should have credited part of this success with moving to University of Cincinnati physicians. Teaching hospitals are always so much better and most of the doctors I’ve chosen atleast train residents if they aren’t actively teaching or doing research. Such a huge difference in their knowledge and approach. I wish you luck in finding good new doctors wherever you’re moving. If there’s a university system, I’d start there.


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