Pistol

@DizzyPopcorn - thank you!

I have a very bad flare right now for the past month and the only thing that is different is that I have allergies. I started Claritin and my POTS is better but still worse than usual. In my case I believe it is because histamine causes vasodilation and my BP is much lower than usual. But it fluctuates really fast , I.e. 140/90 then 80/50, that is when I faint or feel like fainting. As I said, the Claritin gave some relief but it is still bad. Looking back I had a flare every fall and spring for the past 10 years.

@Derek1987 don’t worry, this is common. It happened to me too - despite my employer telling me that I was not safe to work. I have a friend who is a disabled veteran with a metal rod in his spine, ptsd and he has a service dog, yet SSDI turned him down. Despite him being fully disabled per the VA. So - just keep on trucking,,,,

@Clueingforlooks I was in the same boat before and took ppl twice a day, carafate four times a day, Zantac 300 mg at night, zofran as needed and gi cocktail as needed ( vicious lidocaine, mylanta and phenobarbital ). This improved the symptoms some but only when my POTS got under control did my GERD calm down. I would talk to the specialist that controls your POTS since you might benefit from a medication adjustment. This would also help with your adrenaline surges.

@RecipeForDisaster - yes. I believe it is. Who would not b cranky after a bad nights of sleep?

@edriscoll - thank you for sharing your unfortunate story. I am sorry! But because of people like you, who share and educate, we can advocate for ourselves. Bless you!

@Lily I so get it! I also was perimenopausal ( nigh- time hot flashes ) and I have cats .... so I know about the early morning attempts to get attention!

What I love the most about this painting is the feeling of utter helplessness - nothing to hold on to. All alone in a moving, uncontrollable and seemingly unreal environment .... it IS what it feels like!

@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.

@p8d l am with you. I can watch a movie or show but have to mute during commercials or longer and just sit in the quiet or I will freak out from the stimulation. I have - admittedly - snapped at my poor family during movies when I could not retreat. So now I use the pause button a lot and lie down in my bedroom a few times during a movie and this helps keep me sane and the peace around the house 🤫

Yes, I was diagnosed with ADD when I had a neuropsychologist evaluation for seizures and brain fog. ..She said I had it all my life but learned to compensate. Once POTS hit the compensating did not work out anymore. I take Ritalin for POTS and it really helped me.

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!!!!

@Sushi - I had a heart cath in 2018 where they used the right radial artery for the catheter. I developed pain in my right wrist and armpit, they did an arterial ultrasound and found that my radial artery was clotted from the pressure applied after the procedure. I had to take Plavix for a while but had side effects, so I stopped. Today the radial artery si still clotted but better and the arteries developed an alternate circulation, so I have no ill effects from the clot.

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

@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?

@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

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!!!!

I know of these from working in the hospital. We used to use them on patients high-risk for blood clots. IMO not a realistic option since they only give relief while applied - meaning you would have to be in bed while using them. Better to just move your legs - even if bedridden. We can get our blood flowing equally by simply exercising our leg muscles while in bed - but better yet if we do it while upright.

I have found that when I am rested and balanced I sleep well, even have dreams. When I do too much, or am triggered, I sleep poorly. I have to take naps every day or I will be too wired at night and not be able to fall asleep. so - in my case getting hyper is the reason for insomnia - if I can avoid hyper then I can sleep. If tht makes sense.

Believe it or not - I once tried to give an article about POTS to one of my docs and he said: " Sorry - I don't do chapters ". I was wondering - well, how then did you make it through medical school? He said that I was his only ever dysautonomia patient and if there were more he might read up on it but since it was only me …. I still have not forgiven him!

@p8d - glad to hear I am not the only gun in the closet! -- Yes- I am feeling better, was back on my rowing machine for 1 minute today AND did the dishes. But this only due to the extra fluids I was able to receive b/c I have an awesome PCP who works with me and would rather see me at home than in the ER! IV fluids - IMO - are the single most effective treatment for flares IN MY CASE! P.S. Don't ever stop shooting - even if it backfires!!!!!!

Thank you @DizzyPopcorn - SUPER interesting!!!!!

Yes - me too! I cannot handle big stores at all. It can be grocery stores, hardware stores,clothing stores etc - I immediately become antsy, even in my wheel chair. I would get completely irate if I had to stand in line! I would freak out! Too many times of loosing consciousness in my memory bank! I no longer subject myself to stores - unless it is brief, husband at my side, wheel chair under my butt. It is one thing I do not miss!!!!!!

Hi @Scout - I don't crochet but I do knit. I used to knit sweaters, scarfs, socks … now I usually don't have the energy for it. You know that you can crochet purses and handbags tht are really pretty and not hard to make? See if you can find directions online. Enjoy your new hobby!!!!!!

@KaciCrochets - I too get GI issues when I flare with hyperadrenergic issues, for me they come hand-in-hand. PM me if you would like details - I am always here for you!!!!