The last 8 weeks, I feel like I’ve been through hell and back. Of course, I always feel like that when I have a terrible flare-up. But I would like to take the time to shed some light on how one thing triggers another and another and so on.
Ehlers-Danlos Syndrome is essentially a collagen defect, and collagen is everywhere. Common co-morbidities to EDS are Mast Cell Activation Syndrome and Dysautonomia, amongst others.
I also have PMDD; about 9 weeks ago, I started treatment via chemical menopause and hormone replacement. It works great. However, there was also a season change here in the Midwest, and College started back up. So, 3 changes for my body, which doesn’t like changes.
Usually, I manage changes just fine, maybe struggling for a day or two to adjust. But putting your body in chemical menopause is a whole other beast.
It boiled down to the fact that my dysautonomia flared up badly, leading to random fever, hypoglycemia, and good old POTS. As anyone with dysautonomia will know, it also gives you severe exhaustion and fatigue.
As part of managing my PMDD, it also resolved some of the ADHD flares I had in the luteal phase of my cycle. This is good, but remember we have three changes already; now we add a fourth one by switching my ADHD med to the lowest dose and as needed.
So, let’s recap. We have chemical menopause, dysautonomia flare, extreme fatigue and, by now, a messed up sleep/wake cycle. Well, without proper sleep, my dysautonomia flare won’t go away. At this point, I am unable to prevent falling asleep during the day, I am unable to function, and I am messed up at night due to daytime sleep. Melatonin and sleep medicine don’t work for me due to being a poor metabolizer for certain meds (yet another problem my body likes to throw at me).
At this point, I can’t take any ADHD meds; yes, they keep me awake during the day, but it also gives me anxiety and lack of sleep at night. Clearly, my body doesn’t need potent stimulants anymore, which is a good thing overall. Evtl. I’m turning into a zombie and can’t barely function. I’m behind in all my college classes, and my brain keeps forgetting words, affecting my ability to communicate correctly. Evtl, my primary care doctor, realizes it is indeed a problem, and suddenly, all kinds of blood tests are done (all normal), and I am urgently sent to sleep neurology. I never had a specialist appointment within a day of a referral before. So there is that!
Anyways, 5 years ago, I had a similar sleep/wake cycle issue triggering bad dysautonomia. This was fixed with Provigil. Provigil is a stimulant, but not nearly as potent as ADHD medicines. But yet, somehow, the sleep neurologist and the primary care doctor are hesitant to prescribe it despite having medical records of my success. Instead, they kept telling me to retry my ADHD meds prescribed by psychiatry. At this point, it becomes clear, once again, that no one wants to deal with a complex medical condition, as one problem causes a problem with another specialty. Apparently, it is too much to assume that different specialists would consult or work together.
After some angry emails and complaints (I hate when it has to get to this point), I was given 14-day supply of Provigil. I feel like a functioning, normal being and can sleep adequately, and I am hopeful it restores my sleep/wake cycle and gets me out of the dysautonomia flare.
But, as you all know, EDS wouldn’t be EDS if it wouldn’t trigger another side effect! As with most stimulants before, it triggers tics at times. My tic is sucking my tongue on my teeth, which wouldn’t be a bad side effect if there weren’t MCAS. Clearly, MCAS wants to join the part at this time and reacts with tongue /gum swelling due to the tongue tic!
I emailed my docs …. I don’t expect any of them to have a good idea of preventing the tics, so I hope this flare-up stops soon or I figure something out alone!
I hope, for all non-EDS readers, it gives you an insight into how EDS likes to party! And if you have a tic prevention suggestion, please email me!
I also would like to add, that I have the most understanding & supporting professors / staff at College and I will be for ever grateful for their support!
Our EDS community calls it "The Trifecta" and here are some funny TikToks I found!
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