LindsayOne of the frustrations of having an illness that affects the autonomic nervous system is the variety of symptoms it causes. The autonomic nervous system is responsible for digestion, heart rate, blood pressure, body temperature, respiration and many other automatic bodily functions. When I develop an increase in symptoms, or new symptoms, it is difficult to tell if my dysautonomia is acting up, or if there is something else going on.
As a child, I had horrible seasonal allergies, usually in the spring, sometimes in the fall. I would get the typical allergy symptoms – sneezing, watery eyes, runny nose, congestion, etc. Antihistamines and decongestants helped make the symptoms bearable, but did not make them disappear. As I grew older, my symptoms lessened.
Ever since I moved to southern California, I have not had any allergy problems at all, until a little over a year ago. The first day they showed up was awful – I couldn’t stop sneezing all night, to the point of being unable to carry on a conversation because I was interrupted too often by sneezing. Since then, my symptoms have only gotten worse. I know many of my readers suffer from moderate to severe allergies, so I bet you know what I’m talking about.
Here’s the kicker – I’m not sure it’s actually allergies, but with dysautonomia, it is so hard to tell. I had an allergy test done about 2 years ago (when I first became ill doctors suspected sinus issues before POTS) which showed I have an allergy to grass, but nothing else. And, my grass allergy is fairly mild, certainly not bad enough to warrant the kind of symptoms I have.
So what are my symptoms, you may ask?
- uncontrollable sneezing (like, hundreds of times per day)
- difficulty breathing
- painful ears
- chest pain and discomfort
- extreme fatigue
- constant headaches
- patches of itchy skin
Many of these symptoms are found with dysautonomia. For example, I often have chest pain, difficulty breathing, headaches and fatigue caused by dysautonomia. However, lately even those symptoms seem much worse, and are constant. Instead of getting headaches daily, I now have the neverending headache which won’t go away (but, at least it’s not a migraine). My chest pain and pressure has been much more intense than usual. I’ve tried any antihistamine medication I could find (Claritin, Clarinex, Allegra, Zyrtec, Benadryl), nasal sprays (Flonase, Nasonex) and have tried nasal irrigation. Nothing seems to have made a huge difference. I can’t take decongestants because of how they affect my heart.
I don’t have extreme uncontrollable sneezing every day, sometimes I only sneeze maybe 30-40 times. Other days, however, I will go through an entire box of tissues within a few hours (and I reuse tissues until they’re soaked – gross). After enough sneezing, snot will actually drip down my nose in a continuous stream, like a faucet. Eventually I usually pass out from sheer exhaustion. Usually it goes something kind of like this:
After researching, I haven’t found anything to suggest that dysautonomia would cause some of the more typical allergy symptoms, like sneezing, painful ears, itchy skin. However, I did discover that some medications will cause non-allergic rhinitis (basically allergy symptoms without actually being allergic to anything.) And, guess what medication was on the list?
That’s right, my beautiful beta-blocker which controls my heart rate and has allowed me to stand up for more than two minutes at a time. I don’t know for sure that the beta blocker is causing these symptoms, but the timing is about right. I started the beta blocker about a month before my allergy-like symptoms surfaced. If it is the beta-blocker causing the problems, I will have to make a difficult decision about whether to me miserable with allergy-like symptoms, or to be miserable with an uncontrollable heart rate. Oh, dysautonomia, how I loathe thee.
Another possibility is something called mast cell activation disorder/disease (“MCAD”). MCAD is apparently rather rare, but not uncommon in people with dysautonomia.
“Mast cells are resident cells of several types of tissues and contains many granules rich in histamine and heparin.” – Wikipedia
MCAD occurs when the mast cells do not react normally. A similar condition, mastocytosis, occurs when there are an abnormal amount of mast cells. Symptoms of MCAD include abdominal pain, blood pressure changes, intestinal cramping, itching, with and without rashes, chest pain, cognitive difficulties/brain fog, malabsorption, headaches, and many others. I have seen it mentioned in some places that MCAD could also cause sneezing and other congestion, other places do not indicate as much. For more information on mast cell disorders, visit this page. (I’m just learning about MCAD and am still very unfamiliar, so you should not rely on any information I have included here).
Then, just this week a fellow POTSie mentioned this article which indicates that problems standing in POTS (and ME/CFS) patients may be due to mast cell activation. As I mentioned above, MCAD is not common in the general population, so I likely don’t have it, but due to its prevalence in dysautonomiacs, it probably bears looking into. (If you don’t want to read that whole article, scroll about halfway down to the subheadline “Problems Standing Linked to Mast Cell Activation in POTS Patients”.)
Having dysautonomia is bad enough, but the addition of my allergy-like symptoms have complicated life even more. I feel like all I ever do is sleep (or sneeze!) and would like to get my semi-charmed kind of POTSy life back. So, with inspiration from a post by my fellow blogger, Rachel, I decided to break up with my old allergy doctor (who I saw once 9 months ago) and get a new one. My previous allergy test was a blood test which have a reputation for being less reliable than a skin test, and my old allergist didn’t seem very interested in exploring other possibilities. Not a bad guy, but I need a doctor who is open minded, who understands that, as a POTSie, I’m already abnormal and may require some out-of-the-box thinking. So, I meet my new allergist after the Thanksgiving holiday, and I have to say, I’m quite excited about her. I know she intends to to conduct an allergy test right away, which could be a good thing. I hope she lives up to my expectations. Most doctors I’ve seen have not, but that’s a story for another post.
If I don’t have any allergies which would explain my symptoms, then I may need to determine whether it’s worth getting off the beta blocker. But that’s a worse-case scenario that I’ll worry about if the time comes.
“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”
― C.S. Lewis
Stay tuned.
– L
I know of a woman who has mastocytosis. It is not an easy thing to live with. I have had the running of the nose like a faucet after a reaction. First I get congested, cough, have an itchy throat, chest and back. Once that subsides my nose just runs uncontrollably. I recently read somewhere about foods high in histamine. Would it help if you cut them out?
It is also possible that if your immune system is compromised enough, you won’t show a reaction to allergy testing because your body just can’t respond well to the triggers. When I first did the provocation/neutralization testing they had a heck of a time getting my arm to wheal to an antigen yet I would cough, sneeze, get dizzy, etc.
I am so sorry that you are dealing with this on top of everything else. Take care and I hope you find a solution. Do you think it is this one particular beta blocker or beta blockers in general that can do this?
you brought up some great points! i’ve glanced at the list of foods with histamine and haven’t noticed i’m worse on days where i consume them, but that’s definitely something to consider. it’s all beta blockers, not the one i’m specifically on, but a lot of my POTSie friends are on bbs, and no one else seems to have problems like i do. of course, everyone has different experiences and reactions.
You could either be allergic/sensitive to the beta blocker in general and what it does or the filling/preservative in it. I have had to have some of my medications compounded to avoid fillers. Again I am so sorry that you are having a difficult time and a difficult time sorting this all out. It can be a bear that is for sure.
I have been meaning to ask if you have ever been exposed to mold? I recently had someone search mold and POTS and ended up at my blog. I know mold causes a variety of maladies but was just wondering what your take was on this.
that’s very interesting. there are quite a few people in the POTS support group i belong to who suspect their POTS was caused by mold exposure. we do occasionally get a little mold on the shower curtain in our bathroom, but it wipes away easily with bleach. although, i’ve heard mold can easily get in the walls without someone knowing. would mold exposure result in symptoms like i’m having? is that something i would discuss with my allergist, or another doctor? thanks for your comment, lots of possibilities for me to explore!
I do get a lot of your symptoms when I am around mold. I would suggest getting another shower curtain. Wiping it down with bleach only really bleaches out the mold, it doesn’t get rid of it. What allergens have they tested you for. I now believe a lot of illness are due to mold exposure only because I have seen so much from my fellow mold sufferers.
for the blood test, i was tested for cat, cow, dog, and horse hair, 4 different fungi/mold, 5 kinds of grass, house dust, mites, 6 different trees, 5 different weeds
Mould – really? I grew up in a damp house and we were constantly battling mould! My walls and doiner would be wet from condensation when I woke up in the winter mornings!
Thank you Lindsay for this post. I don’t have POTS but my condition does affect the autonomic nervous system. I’ve often wondered why I have severe hay fever outside of normal hay fever season, and not have anything when the rest of the population do. Typically I just figured my body’s weird and its probably just the ME/CFS but maybe I’ll look a bit more into what could be causing it. Hope you get to the bottom of it soon.
I replied to your comment yesterday, but for some reason it didn’t seem to go through. I find your comment very interesting, as POTS and ME/CFS are so similar. i actually was first diagnosed with ME/CFS before I was given a tilt table test which resulted in a POTS diagnosis. Perhaps there is something in the ANS malfunction which is causing our symptoms.
You just totally made my day. I’m so glad my blog was useful to someone! HUGS! I’m seeing a new doctor today for GI stuff – I’ve had to break up with a few GI people since I wrote that post. 😉 I hope your doctor helps you figure this out and I really hope you start to feel better soon. That video reminded me of my poor kitty, and she wears herself out sneezing so much so I’ve seen how tiring it is. Keep us all posted!
I’m stealing your quote btw. 😉
Glad you liked the quote. It’s a pretty accurate description of how I’ve made most of my chronically ill friends 🙂 What is it about GI docs that makes them so difficult?? I had an awful one when I was in AZ – he’d conduct a test, call me 3 weeks later with the results (usually normal), then would schedule another appointment for 3 weeks later, then at that appt schedule another test for 3 weeks later. After 4 months, he hadn’t figured anything out and kept taking his sweet ass time. Finally I called Mayo, and in 4 hours, they made more progress than the doc who took 4 months. Hope you finally find a good GI!!
I was wondering what kind of beta-blocker you’re on? I take Metoprolol as my beta blocker and I also take Florinef, both decrease the immune system and increase risks of infection. Since increasing my dose of metoprolol I notice watery eyes and sneeziness and sometimes cold sweats. I thought for a while I was getting a cold, but it’s been over a month so I think not.
Feel better.
Hi, thank you for your comment! I’m on atenolol. From a quick search, it sounds like atenolol and metoprolol are fairly similar http://www.ncbi.nlm.nih.gov/pubmed/6388253
I wonder if the metoprolol is causing your symptoms, too. It’s frustrating that it’s so difficult to tell what brings on new or increased symptoms. Let me know if you figure out why you suddenly have watery eyes and sneeziness!
hi Lindsay,
Thanks for your comments over at Closer to the Heart!
I’m pretty sure I’ve seen your blog as my son is right now going through testing to see if he has dysautonomia. Glad to be joining you here, looking forward to learning a lot!
best,
Cyndi
thanks for your comment, Cyndi! I enjoy your blog and look forward to reading more.
i’m sorry to hear your son is testing to see if he has dysautonomia – it’s not an easy condition, but i hope he gets some answers and a helpful doctor!
Im a former nurse of 16 yrs with mcas and am very familiar mcas and POTs. The things you are discussing are very familiar to me. The mast cell protocols are that beta and alpha blockers are triggers and alpha and beta agonsits are helpful. Id love to send you a copy of our paperwork. Let me know. 864.325.0223.
Hi Linds, I know this is an old post, but it seems you have continued with your beta blocker. I also noticed my allergies got worse with my beta blocker too. I have contemplated trying ivabradine (coralan) as many potsies do when they can’t take bb’s, however it is alot more expensive. Has this been mentioned to you to take?
Did you have your tryptase levels checked and were they elevated?
i had my tryptase levels checked once and they came back normal, but the test was taken (unscheduled) at a doctor’s visit, and i was told that taking antihistamines could affect the test. i was on a couple antihistamines at the time.
bookmarked!!, I really like your site!
Mast cell and dysautonomia. Look it up. Next question for the doctor slayer? Mcad mcas.
thanks for your comment.
i have looked it up. have been tested for it. have written about it in this blog.
I have had dysautonomia/POTS for around 12 years now have always had a strong histamine reaction with it as well as chronic sinusitis. Over the last couple years I have developed more sneezing and I was told that tryptase was normal but the methylhistamine test from Mayo Clinic for MCAD was slightly high. I also have dry eyes which makes antihistamines challenging. I was told food would not make a big difference by my Vanderbilt POTS specialist in helping the MCAD because the level that MCAD is at. I can’t remember the details of this conversation so sorry I can’t be more helpful. Dealing with this is definitely challenging
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I have POTS and histamine intolerance and highly suspect that it could have been caused by toxic mold exposure. You can’t necessarily see or smell mold for it to be present and a problem. I had our house tested and some types of mold levels were in the 100s (they want them in the single digits to not cause health problems), and the dangerous “black mold” types were in the single digits – though they want those at 0. I’m in the process of trying to find a doctor who specializes in it because most docs know very little about it. I never had any issues, hardly saw a doctor EVER, all my adult life, then at age 43 I developed POTS and have become increasingly sick with all kinds of issues, like the histamine intolerance, and numbness/tingling and burning pains in my head, arm, hand and foot. It is very scary. I also have had episodes of tachycardia that have nothing to do with standing up.. just like my body has been putting off too much adrenaline and I’d have episodes of tachycardia, shaking all over and burning pain/numbness and tingling. Since my house tested positive, I am hoping that detoxing the mold from my body and moving to a home with normal mold levels will help. I am also working on implementing the Nemechek Protocol. https://www.nemechekconsultativemedicine.com/nemechek-protocol/ — also check out his YouTube Channel – videos explain almost everything that is in his book “A Simplified Guide to Autonomic Dysfunction: Why the Brain Fails to Repair Itself” https://www.amazon.com/Simplified-Guide-Autonomic-Dysfunction-Repair/dp/197789772X/ref=sr_1_3?keywords=nemechek&qid=1564201608&s=gateway&sr=8-3
Thanks for your comment, that’s very interesting. Did you hire a professional company to test for mold, or did you do it yourself? Do you live in a particularly humid area?
Just landed on your page after searching Pots and sneezing since my sneezing definitely seems to be posture related. Upon first standing in the morning my nose goes off like a rocket. I go through months like this just like you described and have tried everything. I have Small Fiber Neuropathy also.