LillyBee

Hi Sarah,

We talked about the extended release versions a couple of visits ago. Apparently, there is a patch and an ER pill I could try. But, it took forever to work up to the 1mg/3x a day dose I'm at now because I had such severe side effects, so I am leery about changing anything...undoubtedly I'll have some weirdo, only one person ever had that, kind of side effect. Clonidine has been an absolute life saver for me and I hate to do anything that might mess it up!

As far as side effects, I pretty much slept constantly for a month or so and am still very fatigued. I had dizziness and vertigo, and stomach problems. But it's normal for me to respond like that to meds...it usually goes away in the first month or so. It's an absolute "must" in my treatment regime.

Thanks everyone for your responses! As luck would have it, I did have one of my red blotches when I was doing the 24hr histamine test and I was able to have my blood drawn within 12hrs of this so I would hope that if there was anything to catch it would have been caught. I do understand that there are other things that could have affected the results,so I haven't completely ruled out MCAS as a possibility. Also the Imunologist felt that my symptoms weren't 'severe' enough to be MCAS.?.

Has anyone ever heard of Cholinergic Urticaria? I'm wondering if this might be a possibility. I came across this while doing a search for 'sympathetic discharge and hives'. Cholinergic Urticaria involves acetylcholine and the parasympathetic system. I do have hyperadrenergic POTS so maybe could this be a compensatory mechanism that results in a release of acetylcholine when my norepinephrine is high or when my temp is increasing? Any thoughts?

Yep, that's what I was talking about, forgot the name, though. Of all the things I've lost, it's my mind I miss the most

If you have hyper POTS, one of the symptoms is hyperadrenergic hives. I get them on my face and neck and they don't respond to topical or oral antihistamines. It's one of my first warning signs that I'm about to take a nosedive. I also have facial flushing as a warning sign. It's my signal to hightail it home (or to the bedroom) and get prone. Heat, food and stress are some of the triggers...including heat from the shower. Sometimes, if I take Klonopin, or if it's time for my Clonidine, I can reduce the severity of the episode that follows.

Like SarahA33, I am in constant fight or flight...for me, it happens to be "fight". I am easily agitated by sounds, lights, movement, weather, stress, etc. I have a constant hum of anxiety and when I am triggered, I have a full on "someone is attacking me" physiological response. I have extreme panic and hostility, my BP and HR shoot way up, face and neck flushes and I immediately get hyperadrenergic hives on my face and neck. Initially, I hyperventilate, then I have to "remind" my body to breathe. Finally, I either have near syncope or this sort of forced sleep thing where I had to sleep regardless of where I am or what I am doing.

It sounds extreme, and had I not been a therapist for years before I became ill, I would have chalked it up to PTSD (which was one of my diagnoses), and continued to try and treat the symptoms that way. Unfortunately, no amount of talk therapy, anti-depressants or benzos stop this reaction. They all helped to a degree, but I kept getting worse, not better. It wasn't until I took a therapeutic dose of Clonidine that I was able to reduce the frequency and severity of these attacks. They aren't gone completely, but they have improved. What's more, I have a much better understanding of what's happening to my body. And while understanding doesn't stop the attack, it helps me not have extra fear about it.

Sending good thoughts to you and your girls

Thank you all for your suggestions and help! It's so great to have community support! Katybug, I read through the search results and some were a bit helpful. But I have an unusual variant of Dysautonomia. It's somewhat like Hyper POTS. So, here's the thing...I've been reading about altitude's effect on the Sympathetic Nervous System and from what I understand, altitude increases the SNS function (increased heat rate, breathing) in order to counter act the reduced oxygen in the environment and in our blood. And really, that sounds like a potential disaster for me.

What I'm wondering is this: will the altitude cause me to have more episodes, higher BP, tachy, syncope, etc? Or since I'm already functioning at an increased SNS rate, will it have little effect? Or will the Clonidine I take to level BP and HR help me cope?

These are things that are probably unanswerable. And the logical suggestion is to go visit first. The thing is that it takes me about a year to really adjust after a major move, so I'm not sure if I'd even be able to tell in that short a visit. Even if we go for a month, half of that will be spent trying to recoup from the plane ride.

I lived in Denver for a couple of years, but that was before I became this ill. Since then, I've been at sea level or in the plains.

Maybe there is no way to know...

Hi there, I have a hyper variety, too. I can't regulate temps well at all. I have to be super careful with temperatures both outside and inside. I also have to carefully regulate my shower temp.

You might try responding to your reactions as what they appear to be...if it looks like heat exhaustion, it probably is, even if it's not that hot outside. The same is true for exposure to cold.

Thank you both for the replies. Gjensen I have thought about those places and they aren't totally out of the question, but the cost of living is super high, so I'd have to figure out where I could afford. Also, San Fran's cool, damp weather would be painful, but maybe somewhere inland a bit? I used to live in Portland, which is rainy and 40 degrees most of the year. Joints were killing me...

Katie, thanks for the info. I tried searching altitude, but couldn't find much. I'll try again. If only we could all afford Hawaii.

hi there, I am trying to problem solve and hope someone out there might have some ideas. I have Primary Dysautonomia with hyper response and was recently diagnosed with autonomic and small fiber neuropathy. I have lost the ability to shiver and have decreased sensitivity in my extremities. So, I am super sensitive to cold and heat. I came close to hypothermia this winter, despite being bundled up and temps in the 30's.

Right now, we live in Chicago...and I spend most of the winter inside. We are contemplating a move at some point, to a milder climate. Trying to find a perfect climate is impossible! I don't do well with high humidity, so that limits a lot of southern areas. I thought about someplace like Albuquerque, NM, but I just realized it is about 5,000 feet high.

I know that no matter where I go, I will have a major adjustment period, but is it possible for people with hyper POTS symptoms to live at a higher altitude? Thoughts?

I can't comment on SSRIs (haven't tried them yet), but benzos have been miracle drugs for my POTS - didn't make my orthostatic issues worse at all - in fact, I really do think it made them better. Before the Klonopin, I was in "fight or flight" mode all the time, and even something as simple as having more than one person around me at a time, or having any activity go on around me would send me into a storm of high BP, adrenaline surges, severely erratic heart rate, and tremors. I also had issues swallowing, eating, and digesting my food (we ruled out allergies on that). I also couldn't sleep more than an hour a night (also adrenaline related) and was hospitalized a bunch of times for autonomic storms.

We tried the usual beta blockers, calcium channel blockers, mast cell meds, etc but they all made the problem worse. We then found out that my epinephrine was severely and chronically elevated (whether lying or standing), which meant I wasn't a candidate for hyperPOTS meds as those meds target norepinephrine, not epinephrine. So we tried Valium - that helped a bit. We switched to Klonopin, and I started sleeping 8 hours a night, was able to eat, no tremors, could tolerate people, activity, etc without jumping out of my skin and having adrenaline surges.

It didn't cure the POTS, but heart rate before Klonopin was 90bpm laying down and almost 200bpm standing up. After starting Klonopin, my resting heart rate dropped into the 70's and my standing heart rate dropped down to 130(ish). Because I have the type of POTS where my BP actually goes up when I stand, the Klonopin has actually kept my BP in a very nice, normal range too. I still have adrenaline surges, but not as badly.

I've been on it for a year, and it's stopped working for sleep, but still keeping my other symptoms under control. I'm not looking forward to weaning off, but that might not be for awhile as it's so helpful right now still, and I definitely don't regret taking it in the first place. I've heard a lot of POTS patients say benzos caused their symptoms to worsen horribly, though, so I guess it's pretty individual.

That sounds a lot like what happens to me. I also take Klonopin and it helps to a degree, but when the "storm" hits, it's like taking a TicTac. After a horrible tilt test (didn't make it 1 minute, my BP and heart rate went so high) my doc said you need to be on meds before you have a heart attack or stroke. So, I am now taking 1 mg of Clonidine 3x a day. It makes all of the difference. BTW, I take an SSRI, mast cell meds and pain meds, but none of them stopped the hyper response.

Orthostatic hypotension, Hyperadrenergic POTS, autoimmune dysautonomia..

I have Primary Autonomic Dysfunction with hyperadrenergic syncope. I also have Mast Cell activation Syndrome, which sounds very similar to autoimmune dysautonomia. I also have small fiber and autonomic neuropathy (related to my dysautonomia). My neuro has never used hyper POTS as a dx, I suppose he thinks it is a more global issue. I take Clonidine to regulate my Sympathetic Nervous System to keep my heart and BP from rising so high I could have a heart attack or stroke. Doc says its genetic, and I can see lots of my symptoms on a particular side of my family.

That is a classic sign of hyperadrenergic POTS. Do you have facial flushing or hives? Do you have an exaggerated allergy response? If so, you might find an immunologist who specializes in Mast Cell disorders, as the two illnesses commonly travel together. Vanderbilt U has some pretty great research papers on the subject.

In addition to the light meals, I take zofran and digestive enzymes. I find that anything that makes my food easier to digest is a good thing!

I have brain fog related to multiple things, but I notice that many foods are triggers. I also have MCAS, and have all kinds of weird reactions to food. I have had the great fortune of seeing an allergist who is also an immunologist. You might benefit from seeing one too, if there are any in your area.