Pistol

@MarianRhiannon I have had HPOTS for 15 years and have been on Diltiazem ( type of cardizem ) for ten years. Out of all the drugs I tried it works best for me. I am on 180 mg daily. I am not sure if it would work for me alone but I take it a long with a beta blocker, Carvelidol.  

@erinlia If standing causes low BP it is called orthostatic hypotension, also considered an autonomic dysfunction. Neuro-cardiogenic syncope ( also called vaso-vagal syncope ) can cause this. I have HPOTS and NCS. With NCS my HR ( during TTT ) goes up briefly and then plummets, a long with the BP, causing syncope. 

POTS, on the other hand, causes an increase in HR of at least 30 BPM ( I think its more for kids ) WITHOUT a significant drop in BP within ten minutes of standing, and the increase has to be sustained. 

What is most effective in all of these scenarios are the usual self-help treatments like increasing fluid and salt intake and wearing compression garments ( but this is almost impossible with kids ). I would like to add that the fatigue you mentioned your daughter experiences could be caused by her body constantly trying to provide adequate blood flow to the brain if her BP drops like that often. Moderate exercise regularly and avoiding standing for long periods of time has helped my daughter. 

I used skin barrier cream under the electrodes if I have to leave them on long. And use hydrocortisone cream after once I break out. 

@erinlia Looks like her BP is dropping, which is not POTS. Many teenage girls seem to have this problem. Does she have a pediatrician she can see, or a PCP? Also - please remind her that drinking is very important. My daughter at that age ( she is 19 now ) passed out a few times but she had extreme tachycardia during those times. By drinking a lot all day long she has been able to avoid episodes but I have to remind her sometimes. 

@Salt Sunflower I also get the seasonal flares in spring and fall, but mine I believe are caused by allergens. I live in a rural state and we are surrounded by mountains and fields, so allergens in those seasons are plentiful. Thankfully my allergy symptoms are minimal but apparently enough to cause worsening POTS.

I also get flares when I am stung by insects, such as mosquitoes, so definitely histamine related. However, I know that changes in weather and barometric pressure contribute to my flares, and that is currently the case in my area as we have been experiencing rapidly changing weather, from 70s to 30s with frequent thunderstorms.

@MikeO Pantoprazole is a PPI and not at all the same as a H2 blocker. 

@MaineDoug I am so happy to hear how well you are doing. Good job! You really deserve this break and all the happy memories you will create now!

@MikeO As I understand it diabetic neuropathy can affect the autonomic nervous system, so I think you are correct.

1 hour ago, MikeO said:

It is suspected he has diabetic dysautonomia from occult diabetes over the years." Could this be a valid interpretation?

@MikeO Diabetes is known to be a root cause of dysautonomia, so this may be your answer. 

@MaineDoug a good friend of mine had a hip replacement in November. 6 weeks later she is back to completely normal except she is sooo much better! She feels like a young woman again! Its amazing how much more energy she has without all that pain, I am sure it will go the same for you. Just do what the PT tells you ( not more, not less ) and hopefully you can take your wife dancing soon!

I am thinking of you and wish you an successful surgery, a speedy recovery and uneventful hospital stay! in a few weeks you will be a new man! Best of luck, @MaineDoug

@MikeO As a result of HPOTS I ended up with Barrett's and duodenitis years ago. It was successfully treated with Carafate, Protonix and - most helpful - a medicine compounded by pharmacy called GI cocktail It contains mylanta, Viscous lidocaine and Phenobarbital. This mix healed my GI tract up in just a few weeks and the GERD has been controlled with just Pantoprazole and diet changes. 

@Sea otter My autonomic specialist tried many meds on me although he was very aware of my medication hypersensitivity. Some worked for a while then stopped, others were not effective, some had side effects in the beginning and then I tolerated them better after a while, and then a few I had to stop cold turkey because I had terrible side effects from them, Clonidine and Wellbutrin being some examples. 

All of these were started at a dose much less than the lowest dose available then slowly increased in small increments. Every time I had to start a new medication it was like going down into a dark cave - I was afraid of what might happen. But in the end through all this trial and error we found the combination of meds that is perfect for me. 

Be brave - without trying we cannot tell if it works, and every new med could be the ONE!

@Brian no, unfortunately I dont know. Medication changes possibly. Staying active and hydrating definitely, but activity only as tolerated. 

@Marabi I have had many procedures that required NPO and anesthesia. I used to have problems with anesthesia including high and low BPs and even seizures. They now run fluids before and during them and I no longer have problems. A knowledgeable anesthesiologist would be aware of the special considerations for POTS patients, so it is important you tell them beforehand. 

@Brian Welcome to the forum! It is common for POTS symptoms to be affected by seasons. Do you live in a climate that has changing seasons? Colder temperatures can trigger the ANS to constrict the blood vessels, and that can worsen symptoms. Hot summer weather can DILATE blood vessels, which of course also affects POTS symptoms. Barometric pressure changes can trigger symptoms. 

There are many posts addressing POTS and seasonal changes, you may want to use our search feature to do some more digging? 

Hello @Pineapple I am sorry that you are that ill! I have HPOTS and know the feeling of running a fever but temperature is normal. When I had COVID and other viruses or colds I was able to make secretions and cough, so I am not sure if it would be a typical symptom if you cannot make mucus. But if you cannot sweat it would make sense to me that dysautonomia could affect you like that. Sorry I cannot be of more help. 

Of course hydration is important. You mention you have been in bed for a month - please remember that it is very important to do leg and abs exercises while lying down, and to sit up or stand up even briefly often. One of the things that make dysautonomia worse is prolonged bedrest! Wishing you improvement and recovery soon! 

@MaineDoug @MikeO Last month I had a colonoscopy and EGD the next day. NPO for both procedures. Since I have a port I could run fluids while doing the prep the day before the colonoscopy. I had problems with preps and npo before but they know this now. They ran fluids before each procedure. I did super well, no problems this time. 

Mike, I did a lot of broth and jello for the clear liquid diet part. But the jug of stuff you need to take will fill you up! 

@Jyoti I only lie down for sleep, otherwise I can sit all day. I can walk for about 15 minutes but then I have to sit a spell. If I walk too far I wont be able to get back. What I cannot tolerate at all is standing. A PT did three counts once - I had to stand at a counter until I had to sit down. Each times it was a bit over 2 minutes. I become symptomatic before that - heaviness in the legs, nausea, shortness of breath, dizziness and tachycardia with palpitations. As long as I sit immediately it takes about ten minutes and it usually subsides. If I dont sit down I will pass out. 

I can be active doing something most of the day, but I have to do things in spurts. I can do dishes but then rest, or I can shower but then rest. And I have the most stability in the mornings, that is when I schedule all appointments or do my chores. The rest of the day I sit around doing relaxing things. 

Exercise is pretty much impossible for me. I can do a bit on the rowing machine but nothing upright. 

18 hours ago, MaineDoug said:

I’ve had some good signs, digestive enzymes are better, abdominal pain gone, digesting better, solid stools; and some less so, itchy/scratchies, previous scan results. Overall life is much better and my Total Hip is still on schedule for 3/18/24

Great news! Keep on trucking!

@Machair Yup, this happens to me. I believe your theory about blood rushing to the gut is correct, this would be the parasympathetic branch kicking in doing its job. And with dysautonomia ( especially HPOTS ) there can be an abnormal overcompensation of the sympathetic ANS, causing the Rush-feeling from an norepinephrine dump. 

I also experience the stress from standing while prepping and cooking meals. I have to do it in stages or I dont have the energy to eat after cooking. 

1 hour ago, Jyoti said:

I actually love the idea of being able to say: I'm in a flare due to Mercury's backward movement this week.  People already think I am crazy.....

😂🤣

3 minutes ago, Machair said:

I just wanted to send you all the love in the world and to say I hope you are feeling better. You have helped me more than words can say and my heart goes out to you xxx

AAWWWW! 🥰 Thank You!

After a few years of stability today I was hit with a flare because I missed one of my weekly infusions. Everything was fine until .. well, until I hit a brick wall. Palpitations, shortness-of-breath, no energy, can't get off the couch and can't even read or watch TV. I had to cancel a dinner. The friend asked "Well, what is wrong?" I answered "It is my chronic illness". You can imagine the response. So I am trying to put it simple but just could not. Is it the brain? Then I am crazy. Is is the heart? Then I should see a better cardiologist. Is it a BP problem? Then I need to eat less salt. Is it my nerves? Then I should see a therapist. 

UUUGGGH! Even after soooo many years of dealing with this, and having conquered a lot, I am still hitting a wall when I have to tell people why I cannot function when in a flare. 

@Tdg4 welcome to the forum! You have an interesting question about PTSD, Trauma and dysautonomia. I have HPOTS ( thought  to be genetic since it affects women in three generations in my family ) as well as PTSD and ADHD. I have underwent extensive neuro-psychologic testing, am currently and have been in counseling for the PTSD. I also was positively diagnosed for POTS with lab tests and TTT. The neuro-psychologist states that my symptoms are NOT related to anxiety or trauma. 

I went through a rough time emotionally a year and a half ago but it has not affected my POTS, or worsened the symptoms in any way, neither has the therapy. However - therapy for PTSD can be very scary and stressful since the goal is to have you come to terms with the trauma and learn healthy ways to deal with it. This will trigger the trauma recall and the pure stress of this can potentially trigger an abnormal autonomic response, as ANY stress can.

What is always best when going through a flare is ample rest, mild exercise and lots of fluids, as well as good self care and diet. To most breathing exercises can be helpful, your therapist may be able to teach you some. Be gentle with yourself, and talk to your therapist about your symptoms as well as your doctor. Let us know how you are getting along - be well!

@Sea otter Sadly many of us here have been in your shoes. IMO some docs dont "believe" in POTS - or other dysautonomias - because it challenges all science they were taught. My first diagnosis was NCS - and even after passing out during my firstt TTT the cardiologists were very dismissive. " Its called the common faint" is what I was told. Drink more. Despite me having tons of witnessed ( at work in a hospital ) syncopal episodes and even seizures I was sometimes told that I am "making it up to get attention". Even after some of these were caught on halter monitors and my HR and BP were taken right away, often both sky-high. When they caught an event on EEG and telemetry while hospitalized in an Epilepsy monitoring Unit and it showed seizure from decreased cerebral perfusion due to vaso-constriction still some docs said that they do not believe in POTS. 

I was eventually diagnosed by an autonomic Specialist who even did blood work to check Norepinephrine levels and proved the diagnosis of HPOTS. Still - there are sceptics. So what I learned is - fire the ones that do not know what they are talking about, and the ones that don't know how to help - and keep the ones that understand your symptoms and are willing to take on the frustrating ordeal of finding the right treatment. 

Just because it is called an invisible illness does not mean it is not real.