Pistol

As soon as I expected Dysautonomia I asked to be referred to a specialist. It took a year but I got my diagnosis. I think it is essential that we do not expect regular cardiologists or neurologists to know about our condition - unfortunately so. We have to consider traveling, out-of-pocket expenses and waiting lists or we will just find ourselves frustrated. If we sit around waiting for the closest doc to come up with a solution we are waiting valuable time. There are several renowned autonomic clinics in the US - go there !,,,,,

@Random-Symptom Man - every person’s HRVaries greatly by stimulation, light or noise is one of them. We are not robots, HR and BP are just numbers to show how we react to our environment. As long as Vitalsigns are within normal limits it is OK to have fluctuations. Even brief episodes of high or low are acceptable. Do not fall into the trap of comparing numbers - it is way more helpful and productive to go by how you feel. Believe me, I have learned this lesson early on.

@lieze - I agree with @yogini. If you are curious about biofeedback I personally would not look into DIY, if you think it is an avenue you want to try it is best to go with an established provider.

@lieze - I had PT for a while through home health and the PT had trouble finding a reason to treat me. He had me stand at the sink three times until I felt symptoms. Each time it took just 2minutes. After that I was in bed for 2 days and told him I will never do that again. My doctor wanted me to learn exercises that I can do when I was bedridden to maintain my ability to get out of bed when I can. So they taught me very helpful exercises that I can do lying, sitting or standing, depending on my abilities each day. I don’t think we can expect them to make us better, but they can help us maintain. No PT can take our orthostatic issues away but thy can teach us how to do exercises that help with orthostasis. .... Regarding showering - l too have trouble with standing in the shower, most of us do. Have you ever considered a shower chair? .... I am sorry you had such a bad experience. You can file a complaint with the home health agency so the issue will be addressed and it will not happen to someone else. Be well!

@lieze - I am the same age as you and also have spikes in my BP and it can be high one moment and drops really low the next. This is always accompanied by fainting or lightheaded ness. I am on many BP meds and when I run low I use less B.B. and take an extra one when I run high. For me the most recent spell of these varying BPs was caused by allergies. I take Claritin and it has improved somewhat, at least I no longer faint. I agree with what others have said - a systolic BP of 150 is no reason to be concerned. I don’t take my BP unless I am very unwell because mine is so different every time I take it. Just try to be healthy, drink lots of fluids, stay active and take deep breaths and think of something wonderful when you get too worried. Best wishes!

@MTRJ75 - what you describe and the fact it happens when waking is what I experienced recently when I was going through a sudden flare. In my case it was allergies causing dumping of histamine which dilates the blood vessels and therefore lowers BP. I fainted quite a lot in those weeks. I also experienced diarrhea and GI issues. It got better when I started antihistamine and Zantac. —- You mentioned Sjogrens - I had an episode of dry eyes and mouth and swollen parotid glands recently and saw a rheumo. He did all the blood work and everything except for the ESR was normal, so there is no reason to believe it is anything autoimmune, and definitely not Sjogrens, thank god! So I am just wondering if your symptoms could be caused by histamine like with me? The only allergy symptoms I have are stuffy/ runny nose, occ sneezing and frequent ear infections, I was not even aware that this was due to allergies b/c the symptoms were mild and mostly happened at night. Since starting Claritin I do not have the nighttime symptoms any longer and have not fainted, so it is helping.

@MTRJ75 - I had GI problems, including absorption problems, since childhood but POTS did not become severe until I was 42. In my case I have both high and low BP, both hyperadrenergic POTS and NCS. When I am hyper and in a flare I deal with IBSD and GERD. When I am in the fatigue phase with low BP and fainting I tend to have more gastroparesis symptoms. The ANS controls both cardiovascular system and digestion, so the symptoms are all directly related to Dysautonomia in my case.

@BeachLover - I know what you mean. I get anxiety when I am overstimulated, also irritability and feeling hyper, to the point that I talk really fast and am restless. When I am in the fatigue phase of POTS I feel down, can’t get out of bed and have no energy. But I was evaluated by a neuropsychologist twice and do not have anxiety or depression other than what is related to my physical symptoms and what can be expected from dealing with a chronic illness. So I think it can be difficult determining what causes what when you have both POTS and anxiety/ depression. .... I am sorry you had to survive trauma and are dealing with the effects of it still. Be strong and keep going with a positive attitude! Best wishes!

@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!!!!