dizzytizzy

Why doesn't the allergist like midodrine or the beta blocker? Does she think it can be managed with diet only?

So far I mainly deal with a PCP and EP. No real conflicting opinions as of yet as the PCP defers to the EP on all things autonomic. Seeing an allergist and endocrinologist later this year, so we'll see if more docs bring in differing views.

@Peter Charlton: What damage is that, Peter? Downregulated BP and HR?

What were your symptoms to prompt the beta blocker usage?

EP started me on 10mg of propranolol about two weeks ago, to be taken at bedtime to help with nighttime tachy episodes thought to be from adrenaline surges. Trial went well, so he had me increase to standard dosage of 20mg nightly. Been doing that for about a week now and haven't had any prominent issues and no nighttime tachy either. 

In fact, the past two to three days I have felt almost completely "normal" except for a few daily bouts of dizziness and lightheadedness. Today, those symptoms kicked into full gear and I've come close to passing out three times so far. Haven't been able to get vitals right away when it happens, but a few minutes after laying down and elevating feet, BP is 105/73, HR 59. Not terrible, I don't think. 

And I've noticed that my BP (and to some extent, HR) is lower during mid-morning orthostatics (I usually take them around 10am each day). For example, my BP/HR at the 5 minute standing mark today was 84/65 - 64, which is lower than my usual of around mid-90s/mid-60s to 70s.

I've just sent a message to the EP, but thought I'd ask here too: I've been told that propranolol is a short-acting beta blocker, but is it possible that it's creating latent adverse effects and dropping my BP and/or HR periodically throughout the day?

I really thought we had hit on a winning combination for treatment, but this dizziness/presyncope crapola is horrible. 

@dizzytizzy: If you have the lab's reference ranges, those are good to include too. 

I know my doc says TSH should be closer to 1.0 for patients already on thyroid replacement (and for people not on replacement therapy, anything over 3.0 is generally a sign of underactive thyroid) and you generally want the Free T4 and Free T3 to be in the upper 1/3 of the reference range. 

The problem here is that the doctor didn't even run Free T3, instead she ran Total T3. Free T3 is the amount of active thyroid hormone circulating in your blood - essentially, the amount available to be used by the body. Also, when testing thyroid, I always do my labs first thing in the AM, fasting and before taking my meds. I mainly do this so that I have consistency across all the thyroid labs and can more quickly spot changes as thyroid hormones can and do follow a diurnal pattern. 

And while it looks like the doc tested for TPO (thyroid peroxidase antibodies), she didn't test TGaB (thyroglobulin) antibodies. These are often elevated in autoimmune hypothryoidism AKA Hashimotos.  

Were these labs taken at roughly same time of day?

I have Hashi's. Would you mind posting her lab results and reference ranges?

I find that a lot of doctors will say thyroid is normal, though it may not be optimal. There's a big difference IMO!

I was dx'd in 2014 and had been well-controlled, but when everything with auto dys started up in January, my thyroid has been off. Waiting on an appt so we can adjusts my meds. I feel like Hashi's makes the auto dys worse and vice versa. 

Ah, I'm so sorry @Jimbo! So nothing really came out of the July 18th appt then...except you feeling 100x worse? 

I'm scheduled to see him in December. 

Do you know what your HR and BP did when on the TTT? 

This one may have already been mentioned last month, but here's another one: https://www.cnn.com/2018/06/26/health/pots-tori-nick-foles-dysautonomia/index.html

NFL player's wife has POTS and he is using his platform to help raise awareness. I've shared this article with a lot of friends and family to help them understand what I'm (and we all are) going through. 

@bunny: Those are all good points. I think it's just the worry that some of the symptoms can be so vague and the worry that something else may be going on that is actually treatable. It's a tough diagnosis to just take at face value, I suppose. 

Here is a recent article about two sisters coping with POTS, EDS, and MCAS. 

Love when these "silent" illnesses are covered in the news cycle. The sisters have designed some inspirational shirts to raise awareness too. 

https://www.dailyrepublic.com/all-dr-news/solano-news/local-features/sister-to-sister-carina-stephenie-fuller-battle-pots-together/

@Pharmgirl: Sorry you're going through this. What was the diagnosis from the cardio? 

@rgarton: I'm unable to view the video for some reason. However, my tremor issues are similar to @Scout in that they don't last as long. During what we assume are adrenaline surges, the brunt of it subsides within an hour probably. Other times, I have a low level tremor/shaking feeling all day long, but don't severe jerking. 

How was your cortisol, DHEA, prolactin, etc / other pituitary hormones? I'm assuming the endo checked those out. I do think it's good to check out the pituitary in case there's something going on there. 

@amycooper: How low does your BP run usually? Mine frequently runs less than 100/70 standing (I know, not technically low low, but low enough to cause me symptoms) and more like 90/60 when laying. Some of my worst symptoms are what we think are surges of adrenaline at night, so EP just started me on 10mg of propranolol at bedtime and I haven't noticed a change in BP at all. 

Now, I don't know if that would change if I took it during the day too. Here is a research study that talks about propranolol and that less is more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/ 

And I've only been diagnosed with dysautonomia and don't actually know what "flavor" I have, but we are leaning toward hyper. My EP believes that I have low blood volume and that my body is relying on adrenaline to maintain BP so that's why tremors and anxiety feelings are so strong. By increasing my blood volume and leveling out BP/HR, he thinks we'll decrease the release of adrenaline. I actually wonder if getting some adequate treatment for POTS will lessen the adrenaline/anxiety feelings for you. Maybe not take them away completely, but make them more manageable. 

@Weary: I haven't noticed any change in BP while on them. 

Totally understand! With the clicklist thing, I don't even have to get out of the car. Just pull into a designated spot in the parking lot, call them to tell them I'm there, and they bring them out and load them for me.

Or hubby (or a friend or whoever) can pick them up for me instead. I can't handle the line thing either or lots of head movement looking up and down at the shelves.

If we had a delivery service locally, I'd use it instead. But glad to have at least this option!

I know a lot depends on your location, but I use Kroger's Clicklist all the time now. Tried it out when I first became really sick in January and it's been a lifesaver.

Originally poo pooed the idea of someone else picking out my groceries, but got over that real fast when I couldn't hardly walk without presyncope symptoms.

Sometimes there a mess ups, like when an item is out of stock and they sub it with a brand I can't eat, but mostly it's been a great experience. I place the order and can pickup curbside about 4 hours later.

Very interesting, @Echo. Definitely going to dig into this further! 

Thanks for posting.

My EP suspects I may have histamine issues. While waiting to get an appointment with allergy/immunology, he has me trialing 10 mg of Zyrtec nightly at bedtime.

I'm about 4-5 days into this and actually feel like my allergy symptoms have increased. More congestion, itchy throat, mucus, etc.

Anyone have an idea why this may be or had this happen? I plan on contacting the EP tomorrow to say, "Hey, would you believe...." Never textbook!

@Pistol: That's interesting about the tomatoes/potatoes. I consume those every day - usually via roasted potatoes and V8 juice - in an attempt to keep my potassium up and the V8 helps with the sodium side of things. I sure hope I'm not reacting to those. The EP told me to eat a high potassium diet and those are some of the easiest items to eat for me. 

@Weary: The long waits for appts are terrible! I don't have mine scheduled yet - trying to get the allergist's office to actually call me back 😫 No reactions to banana or latex that I'm aware of.  I actually eat one banana each day to help keep up my potassium.

I've not noticed any changes in BP when having a reaction. When I had the avocado reaction, my HR was at least 12+ beats higher than usual when I laid down that night (a few hours after eating it), so I figured something was going on. 

Not sure about the butter. I haven't tried gluten/dairy in about 9 years since I cut them out. I was having terrible stomach issues at the time - extreme bloating, sulfur burps, vomiting, diarrhea. Once the vomiting started, it wouldn't stop. I'd have to go the ER to get meds to calm it down. Haven't had these types of issues since cutting out gluten/dairy. 

So far I've only tried an H1 blocker - Zyrtec 10mg. They have me trialing it now. What's weird (and a may start a post about this) is it seems like I've had an increase in allergy type symptoms since starting it. Like I'm congested during the day, itchy/sore throat, mucus, etc. 

Quick update for those who may be reading: Am being referred to an allergist/immunologist for screening for allergies as well as possible MCAS. If anyone has any insights into what I should make sure they test, I'm all ears

@TCP: I haven't surgery since my diagnosis, but I did talk to my EP about dental surgery and sedation. While yours will be more complex, he mentioned the importance of getting at least a bag of fluids prior and wearing compression. I would push for an anesthesiologist who is familiar with dysautonomia. 

I used to be anemic quite often prior to my hysterectomy. Since then, I have been only borderline anemic but with very low B12. B12 injections only got me so far, mainly because PCP only wanted to do one per month. Added in sublingual B12 1000 mcg every other day and my numbers (including platelets) have improved significantly. PCP recommended sublingual because she said it is common for Hashi's and celiac patients (and I'm guessing many with chronic illness) to have absorption issues so even if eating a lot of certain vitamin, it may not make it into the part of the stomach/intestines where absorption occurs.  

This deficiency was discovered around the same time as the dysautonomia and improving those numbers has helped with some of my symptoms, so definitely correct what you can. 

I wanted to add too that I've read many people are helped greatly by clonazepam. It didn't quite help me as much, so my EP has me trialing propranolol now to see if that stops these nighttime adrenaline surges.

Forgot to say that I did have some daytime issues that may be similar to what you described. I mostly had them happen while driving - I would get a head rush/dizzy feeling and then my body from the waist down tingled. It wasn't quite the cool feeling that you mentioned, but I'm wondering if we're describing the same thing. Almost reminded me of the butterflies in the stomach kind of feeling. Like nervous x 1000. 

My EP said the daytime episodes sounded like transient drops in BP, so we upped my midodrine, water/salt, and added in compression stockings. 

Don't do any alcohol at all now. I like to say I drank more when I was underage than I ever did legally 😝 I had some PACs and PVCs show up on my 30 day heart monitor. EP said those are more likely to happen when the body is under stress. Since I've been undergoing treatment, they have subsided substantially. When one does occur here and there, I am able to talk myself through it now.

@Oceank316: I don't have a lot of advice here, but have been diagnosed with dysautonomia (no specific type although hPOTS fits the best) and was just referred for testing for MCAS today. Right now, EP only has me trialing Zyrtec, which I think is an H1 blocker. Maybe switching from the benadryl to another H1 blocker (or even H2) would help? Not sure why/if there is a preference for one over the other. 

Also, have you tried any diet changes to see if that helps? Some people seem to rave about an anti-histamine diet while others get no relief. 

I do have a slow metabolism, but also have Hashi's so that's probably why. Has your thyroid checked out okay?