Adrenaline Surge Flare Ups--Treatment?

[df3121]

I was diagnosed with borderline EDS-H (JHS) by Dr. Anthony Vandersteen last year. I have had symptoms of autonomic issues for close to 20 years now - allergies, Raynaud's, wonky reactions to things, sinus tachycardia with triggers. I suspect I have MAST issues as well due to lots of facial flushing etc... your typical triggers - stress, anxiety, alcohol, excess heat, and certain foods.  I've also had issues with POTS - getting light headed standing in one spot too long, almost blacking out when standing up from a squatting position (which makes gardening fun), and then I find if I get up too quickly, I get the pulse surge.  Being overtired can be a trigger sometimes, too.

Anyways,  I seem to be having an increase in symptoms the last week. I'm not sure if it's due to my cycle (lovely hormones), or just a "storm". Sometimes I have found in the past that I'll get into a "sensitive" period where I'm constantly triggered for a week or so.  Any of these things (the flushing, the POTS attacks) can happen on their own, but then sometimes it's like I get an adrenaline surge with it (with either the facial flushing or the POTS etc)... and when that happens I get really cold, shaky etc... Takes about an hour to pass. I had it happen twice last night and then this morning had a typical POTS episode. I had a MAST reaction after supper (in hindsight it was a really high histamine meal), with flushing, nasal congestion etc... and not too long after the surge started, and my BP went up to 140/90, was shaky, cold etc... It all finally settled down in an hour or so, my BP dropped to about 130/85 and I fell asleep on the couch (I find I'm exhausted after these). Woke up a couple hours later to another smaller adrenaline surge which was heat triggered this time (the fire had the room blazing compounded by my fleece pjs and my hubby's body heat.... blech, lol). It was around midnight by then so compound it all by being overtired, BP was 147/90, but this one dropped much faster, and within about 20 minutes was back down to 125/85 again.  Then this morning I got up fairly quickly as my daughter needed me, and of /course my pulse shot up to around 130. I decided to sit and check my BP during this  as I was curious and it was 147/89. But once I sat down my heart rate and BP came down to normal within minutes.

I have suffered for years with so many symptoms. I only found out last year the reason for it, and started getting names for all these things. But Dr. Vandersteen didn't really refer me to anyone, other than physiotherapy to help with the joint issues.  I don't take any medications.  I find laying down with a cool cloth on my forehead tends to help the racing heart, and the "storm" will pass on it's own. But I would like to start moving forward with doctors for care/oversight/treatment, as I don't want this to get worse as I get older (mid 30s now) but I have no idea where to start. Overall, I'm lucky - I've been on some of the MAST/histamine/POTS issues and some of the cases are so debilitating! Most days I am fine. But, then I get these flare ups (more common during the winter, during my period etc...)...

I really appreciate any insight/help.

[Outaker]

Mine happen every night. Im trying clonodine and Methyldopa so let’s see 

[Pistol]

@df3121 - I am sorry that you are experiencing all of these scary symptoms! That is a long time to be that sick!!! -- I would check into an autonomic specialist, you can start on the physician listing on this web site. Unfortunately physiians that specialize in autonomic disorders cannot be found in every state, so many patients have to travel out of state. The other concern is that many specialists have a long waiting time for appointments so we commonly have to see another doctor in the meantime. What I have done in the past is ask my PCP for referral to an autonomic specialist and in the mean time I have seen a local cardiologist. Well - several, b/c most do not know how to treat POTS. It is very important to have a good PCP or cardiologist that is willing to educate themselves and try different treatments or meds for your symptoms. My PCP ad I work well together and he addresses each symptom as it happens ( there is always SOMETHING wrong! ). Also researching your condition and trying all the usual things like hydration, salt and compression is helpful for a lot of people.