I do have other updates to post?such as an “in memoriam” for Osiris, who died last week.
Many of you know that I was in Alabama last week for medical testing. I paid a visit to The Autonomic Disorders and Mitral Valve Prolapse Center in Birmingham.
The visit itself was fairly straightforward: echocardiogram, tilt table test, stress test, examination by and meeting with the doctor. But the impact could be nothing short of life-changing.
Some brief history: I’d been having various health problems (migraines, fatigue, IBS, dizziness, etc.) for years?really as far back as I can remember. I’d gone to one doctor after another, and had probably gained a reputation as a hypochondriac. Then in 1997, another new GP mentioned hearing a heart murmur. That was news to me, so she ordered an echocardiogram. That test showed mitral valve prolapse with some regurgitation.
There’s a syndrome that can go along with mitral valve prolapse, and mitral valve prolapse syndrome and dysautonomia are used interchangeably. It’s a dysfunction of the autonomic nervous system with truly lovely symptoms like migraines, fatigue, IBS, anxiety/panic, dizziness, tinnitus, and more. Big fun.
My second echo?ordered by another new-to-me GP in 2011?showed no MVP. But this third echo last week showed the prolapse again. It’s a functional test, measuring only what’s happening in that moment. It cannot show what your heart was doing last week or even an hour beforehand.
The tilt table test?where you’re strapped to a table while lying flat and then gradually titled (head upward) to 60-degrees?was also positive for dysautonomia. The stress test indicated that there are no other heart issues involved.
Just having these test results, at the hands of specialists, was hugely validating. Though I’ve known about my own dysautonomia for more than 15 years, this diagnosis was pretty much anecdotal?it was a matter of my symptoms added to the best guesses of a parade of GPs.
So now what I’d already known is truly official?though I’ll admit my biggest fear was traveling all that way and going through all these tests only to be told, “Nope, it’s not dysautonomia. We don’t know what’s wrong with you. Now go away.”
But, as I’ve written before, there is no cure for MVPS/dysautonomia. There is only management. But now I have experts in my corner to help me figure this out. Previously, it had just been me alone with an armload of books and websites.
My prescription:
- NO caffeine. That includes eliminating chocolate, y’all. (So, sorry, I’m not buying Girl Scout cookies this year.)
- Fluids: 50-60 ounces of fluids/water per day OR 1 ounce of water for each degree F of outdoor temperature, whichever is greater. (This gets to be a problem in the summer when I have to drink 95 ounces of water; trust me, I’ve tried it before.)
- Exercise: 150 minutes of aerobic exercise per week. No isometrics. (So no visits to the weight room, and I’ll have to “scale back” on curling for a while.)
- Atenolol: a beta blocker, to reduce the levels of adrenaline in my system.
- Klonopin: to “reset” my ANS and reduce symptoms like insomnia and IBS.
- Sertraline: to boost my serotonin levels and reduce symptoms like migraines.
Best guesses as to the factors currently exacerbating this condition:
- stress
- perimenopause
- vitamin D deficiency
I am keeping a daily log of meds, fluids, exercise, etc. I’m not a big fan of taking any medications?that’s another discussion?but I am committed to feeling better. I’ve been more or less debilitated for several years now, and while I don’t hold out hope for reclaiming a “normal life” (because I’ve never had one), I do look forward to having more energy and simply not feeling bad.
I have already pushed too hard too soon, and paid for it. I’m back to taking things a bit more slowly while keeping a wary eye out for slipping into slacking off. It’s a tightrope walk, trying to find that balance.
Creative Commons photo by mgstanton.
Oh, Jen, but you know what it truly IS now!
Take it easy, do what is likely to work, and hang in there!
(I will eat all the excess chocolate for you, to keep you safe…)
Hugs from afar,
**Katy
Well, that’s very generous and considerate of you, Katy! I will look around to see if I can find caffeine-free chocolate someplace; there apparently is a market for it after all. 😉
Hi Jen, I’m jealous you’ve been able to go to the MVP Center in Alabama. I’ve always wanted to go. I’m glad you’ve been able to get some advice for how to feel better soon. I’m surprised they didn’t discuss magnesium at all? I have a Vitamin D deficiency too and take 50,000IUs a week for it. I hope you’re feeling better soon!
~Lorelei
Lorelei: Sorry for the very late response, but thanks for your good wishes!
Hi Jennifer;
I am very curious how things will work out for you on your medications. I have a somewhat similar story. I have not been diagnosed with MVPS, but after years of pursuing answers, it seems like the one thing hat explains my symptoms best. I have twice been told by doctors that I have a mid-systolic click when they listen to my heart, but I had one echo that was negative. I have hypothyroidism, which is strongly associated with MVP and my mother has mitral valve prolapse, and there is a genetic link. My worst symptom right now is insomnia–I am waking up at every night at 3 AM with my heart pounding and completely unable to fall back asleep. That feeling of excessive adrenaline, like I just drank 5 cups of coffee, is there throughout the day, along with occasional palpitations, and if I exercise, it gets worse rather than better. So I have gotten out of shape and can do little about it. I have thought about going to the clinic in Alabama, but not sure I can afford the time or money, but it would sure be nice to see a doctor that knows something about this syndrome. My only advice is be careful with your Klonopin–don’t stay on it too long or up the dosage. Getting off can be a nightmare. I am rooting for you.
Lee
Lee:
What you’ve described certainly does sound familiar. Keep in mind that an echocardiogram is a functional test?it shows only what’s going on within the time period of the test. I had a positive (for MVP) echo in 1997, a negative one in 2011, and another positive one this past February at the Alabama clinic. And the mitral valve prolapse itself is just one symptom of the disorder, rather than a cause.
There are several good books available about living with dysautonomia, and wonderful online support groups as well. Have you spoken with your primary care doctor about dysautonomia? Some physicians are willing to learn and to work with you to find a solution.
And I’m with you on the clonazepam. I’m taking only .25 mg once daily, but even that amount makes me nervous. I’ll be checking in with the Alabama clinic next week about my medications, especially in regards to how my health seems to be on the downswing again.
Good luck!
Hi Jennifer, Would it be possible to tell me what dosage you were prescribed of zoloft and atenolol? Would greatly appreciate any information on your dosages. Thank You, Dan
Dan: Atenolol and sertraline are both 50mg daily. The atenolol I take in two doses of 25mg each.
How do they treat you now? They are very rude to us since Walkins has retired. It has really upset our family. We miss him! We are looking for another Dr.
Kathy, I’m sorry to hear you’ve been having a bad experience with the clinic. I’ve been back since early 2013 and didn’t even know that Dr. Watkins had retired. I have been looking for a specialist (with availability for new patients) closer to Oregon but haven’t had any luck so far. I am, however, number 15 on a pages-long waiting list for a POTS specialist here in Portland.
Kathy, I saw one of the doctors for years at the MVP clinic. I was prescribed Klonopin for EIGHT years as part of my treatment. I suffer from Ehlers Danlos. And dysautonomia. The two often occur together and it is very complex. I asked about this in the clinic and My doctor was unaware of the connection between Ehlers Danlos and dysautonomia. I started having withdrawals between doses of the Klonopin and didn’t realize what was happening. Please read the side effects and withdrawal symptoms and be aware of how this might make you feel. Having dysautonomia is bad enough without dealing with this hellish nightmare! My body needed more of this medicine and when the Dose wasnt increased, the Withdrawal symptoms were constantly present. I was told not to worry about getting addicted to the medication because I would most likely have to take it my entire life. I always took my medication as prescribed. After going to several doctors and MULTIPLE tests to find out what in the world was wrong, I finally ended up at Vanderbilt and was taken off the medication. I have been Klonopin free for 16 months and have just started feeling some better the past few months. I went from having a college degree and career to not being able to do basic daily things to function. I was 38 and honestly felt like I had dementia and felt drunk on and off throughout each day. Raising awareness is important to me. If you have any questions please feel free to ask. My advice would be to research yourself and ask lots of questions. I have recently been told that this drug could cause serious irreversible side effects. Also, you might want to check the time period that the FDA says this medication is safe to use. It is days, NOT years! Hopefully someone will benefit from this post. Good luck and hoping you feel better soon.
I am 57 yrs old and use to live in Birmingham , I was diagnosed with MVP by Dr. Phillip Watkins 23 years ago. He put me on atenolol and klonoplin at that time. I am still today on atenolol and klonoplin . As of a month ago none of my doctors in Huntsville where I live now will fill my Rx for either of these medications. I’m having withdrawals and have been to two different doctors here in Huntsville that tell me I need to go into rehab to get weaned off this medication. I tried to go back to the MVP clinic in Birmingham and they won’t see me because I’m 55 yrs old. It’s ruining my life, my home, lost my job, and about to ruin my relationship with my fiancé . What is a person to do. I can’t go into rehab, I raise my 7 year old grandson and have no family here in Alabama to help. Please people don’t get on klonoplin it’s the Devils drug. I read an article that’s Stevie Nicks wrote on it she said and I quote: getting off klonoplin was worse than coming off heroine. It’s a hell I’ve never known until now. These Drs put you on this medication then years later won’t refill it and your body goes into shock. I know I’m living it.
Dr. Michelle Stacey at OHSU, a neuromuscular neurologist, is now doing autonomic dysfunction testing. She works with Ehler’s Danlos Syndrome (which is linked to MVP and autonomic dysfunction btw) and POTS.
I have “sort of” been diagnosed with Dysautonomia by an Endocrinologist. Prescribed Atenolol for possible MVP and Celexa, in case my Serotonin level needed increasing in my body, rather than for depression. I am interested in learning more about Dysautonomia.
Hi, Joy. There are some good resources available for learning more about dysautonomia. A good place to start is Dysautonomia International (http://www.dysautonomiainternational.org/). You might also be interested in the Mitral Valve Prolapse Syndrome/Dysautonomia group on Facebook (https://www.facebook.com/groups/263939506962833/). It’s possible there are general chronic illness and even dysautonomia-specific Meetup groups near you, too, if you’re looking for a more local support network. Hope this helps!
Thank you for your reply!!
I’m so glad I found this site today. I was diagnosed with MVP Syndrome Dysautonomia in B’ham about 20 years ago, after having lived with it for more than 40 years, having no idea what was “wrong” with me and not having anyone else believe that there was anything physical going on with me. Of course nothing was “wrong” — it’s just my heart and central nervous system that have some difficulties.