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Searching for underlying condition/diagnosis


Kirsty

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Hi all. I was diagnosed with POTS in 2015 after a severe bout of Influenza A. On the same day, I found out I was pregnant, and have since had a baby. I was travelling along ok until baby was nine months old, then was hit with severe, anomalous symptoms such as blurred vision, dizziness, overwhelming fatigue (like chronic fatigue on steroids...a feeling like I've been anaesthetised), nausea, paraesthesia in hands and feet, tremulousness/anxiety/dread/shaking, and incapacitating depression/suicidality. The latter is very, very uncharacteristic of me, seemed to come out of the blue, and seemed to be far more catastrophic than what the situation would otherwise create. I spent a month in hospital earlier this year to no avail (trialling all the usual POTS medication which created uncomfortable side effects, yet did not help the symptoms for which I was taking them in the first place), and anti-depressants I've tried (three so far) have created such awful akathisia that I've had no choice but to stop them. I saw a different doctor recently who did some gut microbe testing and it found an overgrowth of streptococcus, for which he placed me on antibiotics. Within a day or two, I noticed an elevation in my mood, and within three-four days I experienced an 80% improvement in my depression/suicidality symptoms. It honestly felt like a miracle. Unfortunately, two weeks into a six week course of these antibiotics, they stopped working (we don't know why), and I am now back to catastrophic depression, also with no change to physical symptoms I am wondering what illness might be underlying the POTS....the more research I do, the more I find that POTS patients seem to have an underlying condition. I am convinced there is some sort of inflammatory/stealth viral or bacterial process at work for my depression to have responded to antibiotics. Any ideas?

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Kirsty,

I am so sorry that you are experiencing all of these horrible symptoms!  How difficult this must be after having a baby.  You are right, though, in that POTS is usually as a result of something else.  Is there a possibility of autoimmune - any testing done to rule this out? My daughters have Ehlers Danlos Syndrome as the primary cause of most everything that is wrong with them, including POTS.  Any possibility of that??  Unfortunately, it takes time to unearth all of the possibilities, endless referrals, wait times for appointments, etc.  While you are waiting, research.  Make a list of your symptoms, when the baby is napping, start Googling!!  That's how I came across the diagnosis for my girls.  I diagnosed them, found a doctor who specialized in EDS, somehow managed a referral to said doctor and that's how they've gotten where they are today.  It wasn't because any doctor diagnosed them, I found it.  So, take control of your situation and ask as many questions as you can possibly think of, we will do the best to share anything that can relate to it, and keep Googling!  Read, read, read.  Don't wait for a doctor to say "hey, I think you have this or that."  It may never happen.  Only you know your body.  I wish you all the best and I hope the depression lifts soon.  That's got to be the hardest symptom.  Gentle hugs!!!

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The gut microbe testing sounds like it unearthed at least one issue you're facing. Did the doctor suggest replacing the bacteria you were killing off with a probiotic? It's possible you may need to rebalance your flora. If you have trouble with typical probiotics, consider histamine-reducing strains like B. infantis or L. Rhamnosus. The company Custom Probiotics sells a d-lactate-free version with strains that are histamine-reducing. The company provides samples for a reduced price, which is what i'm taking right now.

Additionally, dietary changes helped me and may be a good option for trying to heal your gut.  Gut health and the brain health are very much connected in my experience.

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