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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Medications for Mast Cell, POTS, Chiari, etc.

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Medications for Mast Cell, POTS, Chiari, etc. › Reply To: Medications for Mast Cell, POTS, Chiari, etc.

April 25, 2012 at 2:22 am #2047
SweetFeather
Participant

Thank you to everyone and Dr. Diana for always listening!

I also went off Singulair….my mom had actually noticed my moods drastically changing when I was on it, but at first I didn’t attribute it to the singulair. I had higher levels of anxiety, emotional instability (i.e. feeling like crying for no reason). Even my dreams were very vivid and unpleasant! I am happy to be off of it.

Megan, I reacted poorly to Singulair too.
…….. I was a raving biotch on it. It was like BAD PMS. I was so cranky and impatient with my kids. In one word I was extremely “irritable.” I didn’t even like being with myself when I was on it and I couldn’t do that to my hubby and my kids! My allergist and primary were surprised I reacted that way.

Florinef gave me a nearly constant headache which felt like a giant hand was slowly squeezing my brain. I immediately gained back fifteen of the pounds back that I’d lost with my first bad POTS episodes.

My cardiologist put me on propanolol and midodrine when I was first diagnosed with POTS but the beta blocker had my blood pressure so low I thought I wouldn’t wake up in the morning and I started having really bad anxiety episodes. Like crawling up the wall! My doc tested me for a pheo and my urinary and plasma tests showed grossly elevated metanephrines. (10 times normal and 4 times is considered virtually 100 percent for a pheo.) So I had scan after scan after scan…. no pheo. Went off the betablocker and midodrine and metanephrines returned to normal. My endocrinologist said I was lucky I hadn’t had a “catastrophic heart event” at those levels. So if you are feeling worse and you have anxiety symptoms (I didn’t have high blood pressure with it like most pheos but my other symptoms sounded like a pheo) … ask about having your catecholamines tested… I wish she’d checked my methylhistamine and tryptase at that time. I have lab orders for those two tests if I have an “episode” but haven’t had one since being on the mast cell protocol. 😉

Best of luck with your docs and with getting your meds figured out.
SweetFeather

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