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Pistol

POTS falre from seasonal allergies?

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I have been going through an unexpected spell of worsening symtoms. For the past 3 weeks I have been experiencing rapidly fluctuating BP's, increase in HR, terrible orthostatic symptoms ( including syncope ) and more.  I have a port and receive weekly infusions which we have increased to twice a week.  The days of and after the infusions I feel much better but after 24 hours I start with fatigue and then the other symptoms return and I have been passing out consistently around 8 pm the days between infusions. My cardiologist recommended to decrease my BB ( Carvelidol ) but if that does not help both he and my PCP want me to go to ER to see what is going on.  Which most of us here know that that is pretty much useless …..

Well - I realized that for these past weeks I have been having runny nose and stuffy nose when sleeping. This morning I have itchy eyes and very runny nose - so my guess is that I am allergic to ragweed ( which is active currently ) or other late summer culprits. I never had seasonal allergies before, so this is new for me. I came across the following information from the POTS article by @edriscoll on this website: 

Treating allergies might help one to feel better. It has been reported that people with POTS lose their ability to vasoconstrict (Grubb, 2000). This means that many POTS patients have problems with their blood vessels being excessively dilated. Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients. 

Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants. 

So - does anyone here have noticed POTS worsening from allergies and what do you take for them? Benadryl makes me sleepy but I can take Claritin ( but I am not sure if that would work ). The above info would lead me to believe that treating the potential allergies could help my orthostatic problems? Any input is greatly appreciated!!!! 

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I've been wondering about allergies, too, since I got symptomatic right around the start of ragweed season. My nose has been running on and off like crazy and my doctor said my lymph nodes in my neck were slightly enlarged. My symptoms got less intense on hydroxyzine, which is an old school antihistamine, but when I tried taking Benadryl I started shaking and couldn't stop. So idk what to make of any of that. I haven't taken the hydroxyzine for three nights and I haven't had any nighttime surges for the first time in weeks. I have never had issues with allergies affecting my pots before.

However, I did have an allergic reaction to my toothpaste after they switched to stannous fluoride. My whole mouth was swollen and I was exhausted for an unusually long time. Shortly after I started using a different toothpaste I started having nighttime surges, which got worse and worse over the course of the next three weeks. 

I can't say for sure my POTS got worse because of allergies, but the timing is suspicious.

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I typically have a flare up each fall which I attribute to fall allergies

I have been dxed with hyper POTS and MCAS so I think it makes sense that fall allergies could be causing the problems.

Maybe you have MCAS? It is very hard to diagnose (or rule out for that matter)

I find nasalcrom a good nasal spray for congestion, it is a mast cell stabilizer you spray in your nose, over the counter

KaciCrochets:
Interestingly, one of the symptoms I Tend to get in my fall flare ups is shaking, which for some reason using an electric heat pad (like those used for muscle pain) and applying it to my core helps 

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The ragweed here has been extremely high (that's the weather report not my description). Ragweed has always bothered me but I'm seeing more definite correlation with some symptoms, including, oddly, GI symptoms and I cannot sleep at all. Anybody here have GI symptoms associated?  

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@toomanyproblems - yes, in addition to the orthostatic symptoms I have been having more GERD and diarrhea ( I have IBSD from POTS ). I usually encounter GI problems going hand-in-hand with my POTS flares

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@Pistol - I'm sorry that you're having a flair up. That sucks! Allergies suck too.  Together, it's brutal.

Before my dysautonomia dx, several doctors thought I had MCAS because I also have significant allergies. I was getting 6-10 sinus infections per year due to allergies - at least half in the fall. Unlike @POTSius, nasalchrom did nothing for me, and they eventually ruled out MCAS.

For the last 4 months I've  been using olopatadine nasal sprayHope's. I also take Zyrtec daily, which is an H1 antihistamine, and Zantac, which is an H2 blocker. I've been nearly symptom free for the last 4 months. It's awesome so far. I have high hopes, but I'm waiting for the other shoe to drop as Fall hits full swing...

I'm about to get my local allergy tests done again. They have these new sublingual drops instead of shots. One drop under the tung every day for 1-2 years. The last time I did it, it helped me. It didnt make me all better, but my sinuses were a little better because of the sublingual drops. The spring symptoms are now way better for me. I ended up being allergic to a bunch of things I had never thought about. My insurance didnt cover the drops last time, but it was worth it to me. 

The other thing that helps me is having my ducts vacuumed and changing my home's air filters regularly. There is a ton of junk that settles in the duct work of my house. Again, it's not cheap to have someone vaccuum your ducts, but it gives me more upright days.

As for allergies and pots, I swell up when I get allergies. I gain a couple pounds in a couple hours. I weigh myself twice a day because it helps me monitor my allergies. I think the bloating and mucous somehow interact with pots/dysautonomia. It correlates with gastric emptying, increased pre-syncope symptoms (BP & HR variability), nausea, fatigue, muscle pain and joint pain. While I'm retaining more water in my mucosal layers, I loose water due to gastric emtying, runny nose, and mucous in my digestive system.

I wish you luck moving forward with your allergy symptoms. 

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2 minutes ago, Random-Symptom Man said:

I'm about to get my local allergy tests done again. They have these new sublingual drops instead of shots. One drop under the tung every day for 1-2 years. The last time I did it, it helped me. It didnt make me all better, but my sinuses were a little better because of the sublingual drops

@Random-Symptom Man - thank you for your reply. My daughter has severe environmental allergies and asthma and she has been on the SLIT ( sublingual Immunotherapy ) - or allergy drops under the tongue - for 3 years with AWESOME results. They totally worked for her, she hardly ever needs he inhaler unless she is sick. --- How have you done with Nasocort? 

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@Pistol -

I have nasacort in my arsenal, but it's less effective for me than the olopatadine spray. If I really need to get rid of something quick, I use Afrin - allergy. But I never use Afrin for more than a day because I get a bad rebound once I stop after a few days of using it. 

Also, regarding increased GERD - I take Zantac for acid reflux/GERD. The added benefit is that I sleep better when I take Zantac. I only hypothesize that the GERD interferes with my sleep. Of course, sleep is a large component for me regulating my BP/HR. So, allergies, which mess with my GERD, result in worse POTS (I think - I have correlation, but that doesn't mean causation).

Plus, zantac is an H2 blocker, which shoukd help with my allergies. I notice that on daily zantac I also have fewer gastric emptying spells.

Do you take anything for GERD?

Edited by Random-Symptom Man
Typos

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@POTSius That's good to know about the shaking and electric heating pad, I'll have to remember that. I had never had a reaction to Benadryl before, it sure is weird.

I went into my son's room this morning to make the bed and do some of his laundry (he's away at college and we are getting ready to sell our house, so tidying up), and I don't know if it was dust or what, but I haven't been able to stop sneezing. I'm desperately hoping I won't go back to surging and stomach pain now, but if I do it'll confirm the allergy theory.

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2 hours ago, Random-Symptom Man said:

Do you take anything for GERD?

Yes - Protomix twice a day, Carafate, Zofran, Zantac and GI cocktail as needed. I had been well controlled until this unfortunate recent flare. 

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I take chlorphenamine at bed time ,h1 blocker. I have been tested so I know what most of my allergies are which has been really helpful. I use air filters and I have decided to look into pollen screens for the windows thought it might also keep out those pesky mosquitoes! 

Sorry it’s put you in a flare x

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Thanks, everyone, for replying. I started Claritin and Flonase - we'll see! But I realized something: a while back I posted about if anyone see a correlation between Flares and insect bites ( I had stepped in an ants nest and became very POTS symp[tomatic ) Now I get it: allergies, insect bites, illness … they all cause histamine release which affects the sympathetic NS and causes vasodilation. Hence the fainting, fluctuating BP,s. tachycardia, flushing, heat waves etc. This was a WOW moment for me. Now I feel invincible b/c in my head I now found a way to control these flares better - I can just pop an antihistamine and not flare again!!!! 

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@Pistolisn’t it amazing when you get that kind of epiphany?  It’s better than winning the lottery to me.  I am happy that you figured it out and especially that you shared it with us.

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@p8d yes, it’s awesome. Especially since I was able to avoid the ER and thousands of dollars in unnecessary testing! It proves that we know ourselves best and have to be our own detectives. 

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Here's more evidence for you. I have been smelling something musty/smoky in my house for weeks and it's been driving me absolutely crazy. Today I finally found the source - a houseplant that I've had for a couple of years but it was pretty dormant until this summer. After sniffing it to be sure that's where the smell was coming from, I got really shaky and jittery. In addition, I spent yesterday at my mom's where I felt fine other than a little dizziness, but after I got home I got inexplicably anxious. I've moved the plant outside and I'm hoping now my nervous system will start calming down again. I think I might get an air purifier, too. 

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@KaciCrochets I hope moving the plant helps. Great observations. We are amazing creatures, aren't we?

Smells are awful for my ANS.

I get gastric emptying when I smell air fresheners, scented cleaners and candles. It only takes seconds from the first smell to when I need to rush (as best as I can) to a bathroom. My heart races like crazy. I sweat. Sometimes my vision starts to go black and I get really lightheaded like I'm going to feint. I've removed nearly everything scented from my house.

I can't imagine living with those feelings continuously in your own home. I'm so sorry. I really hope you identified the cause.

 

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Update for anyone who is interested: allergy season is officially over, I am off antihistamine and I am feeling GREAT!!!! I am able to cut down infusions from 3 x a week to twice a week and hope to be able to go back to once a week. So yes - allergies definitely made my POTS much worse and now I know why I have been very sick every spring and fall for the last 10 years!!!!!

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