Pistol

Hello @POTSie78 - I had an autonomic reflex test done 10 years ago at Vanderbilt, before my HPOTS diagnosis. The testing came back completely normal, yet I showed positive for NCS at my first TTT done in another facility. A year later I was diagnosed with HPOTS ( confirmed with neurotransmitter levels ). My 2 sisters that also suffer from POTS ( genetic in my family ) have tested normal on autonomic reflex testing as well, however their symptoms are highly suggestive for HPOTS, and they have both dysautonomia - one has HPOTS and one autonomic neuropathy. The reason I am letting you know this is b/c autonomic reflex testing can be normal yet you can still have POTS - as you can see on the testing in my family. I also know of other members on this forum that have been diagnosed with POTS per TTT but had normal autonomic testing. What type of diagnosis? Are you talking SFN?

@Chris Darling - yes, a TTT would be the way to diagnose POTS, since it will show what your HR does when you are upright. A cardiologist performs this test. You can also do a similar test at home by yourself: PMTTT-Instructions.pdf (potscare.com)

Dear @racingheart77 - thank you for posting your thoughts. I am sorry you have been through so much! Depression is a common result of dysautonomia, due to the disability that comes with this illness. Although there is no evidence that depression CAUSES POTS it is possible that it could CONTRIBUTE to developing POTS - simply by the inactivity and deconditioning that comes with it. Having said that - the exhaustion, fatigue, exercise and orthostatic intolerance that comes from POTS can often be mistaken for depression as well, so the 2 illnesses can easily get confused. I am sorry you have had so much to deal with, and I hope you will find a place of peace!

Finally a rainbow over your cloudy days, @CallieAndToby22! Good Luck, and please keep us posted!!!!!

@Chris Darling - there is a clear differentiation between POTS and IST: in IST the RESTING HR is elevated and in POTS the HR increases upon standing. The symptoms of POTS and IST can be similar: IST: Palpitations, Shortness of breath, Exercise intolerance, Fatigue, Resting heart rate of greater than 100bpm, Sleeping heart rate of 70 – 90bpm,Minimal exertion, heart rate will rapidly reach 150bpm ( www.heartrhythmalliance.org/aa/us/inappropriate-sinus-tachycardia ) POTS: Symptoms may vary from person to person and include: Rapid heartbeat, Light-headedness, Fainting, Fatigue, High/low blood pressure , Inability to exercise, Nausea, Anxiety, Blurred vision, Headaches As you see the 2 syndromes can be quite similar in presentation. A TTT can make the differentiation between the two. In IST controlling the HR can improve symptoms, whereas in POTS it commonly does not.

You know I encountered the same exact thing, but I found out the hard way that if my body tells me no it MEANS NO! I am homebound and don;t go out much, and sometimes I think that I might be able to but am afraid that a certain event or activity will cause a flare - so I avoid it. BUT - if I do go or push myself despite this inner warning system, more often than not do I pay for it. So I listen to my body - I can tell when I feel good enough to do something, and I also know when I am not well enough. But it takes time to learn to tell the difference!

Thanks @MTRJ75 !

@Marissa - why would they do that? Is it because of your insurance and in-network reasons? If that is the case you can call your insurance company and ask them for a specialist in-state that is on their list. You can also ask them to add a physician to their network. Sometimes out-of-state referrals will ask you to go back to in-state treatment when they feel their particular expertise is no longer needed, and can now be taken over by a "regular" specialist. For example: my autonomic specialist ( a cardiologist ) is out-of-state but he recommended for me to also get an in-state cardiologist for my general heart-related issues. That way I did not have to travel so far for general check-ups and unrelated cardiac issues, and only see him for dysautonomia. I only see the autonomic specialist every two years ( unless an issue arises ) and have all my other appointments with the local cardiologist.

@Knellie - have you tried cooling vests or wrist bands? You can also put a wet wash cloth in the freezer and put it around your neck ( this COULD make your migraine worse ) or around your wrist, there are a lot of vessels right under the skin and the cooled blood gets circulated fast to cool down the body.

@toomanyproblems - wow, I did not know that about the body suppressing AI during pregnancy - but it makes complete sense!!!!! I too felt super while pregnant but all of my POTS symptoms started afterwards. And I too pushed myself too much and made the condition worse because of it. Thanks so much for sharing!!!!

@Knellie - I have HPOTS and Raynaud's, as well as Prinz-metal angina. The raynaud's and angina are both caused by the high NE levels causing excessive vasoconstriction. Other types of POTS ( not caused by high NE levels ) also can cause Raynauds if the ANS responds to excessive vasodilation by sympathetic overcompensation, causing the vessels to constrict in response. Vasodilators usually are prescribed for severe cases of Raynaud's, but this can be complicated if the initial trigger IS vasodilation.

@KiminOrlando - I have never heard of this term before. Is this a new classification?

Well said, @Sushi!

Hello @Elizaangelica - the question of the mechanisms behind different types of POTS is difficult to answer. There are so many different ways the ANS can malfunction! There is low-volume POTS ( the ANS responds to low volume of circulating blood ), POTS caused by EDS ( the blood vessels cannot constrict adequately due to being too elastic ), neuropathic POTS ( like SFN etc, where the nerve endings communicating within the ANS are defunct ), HPOTS, where the ANS responds to different triggers by dumping norepinephrine and causes excessive vasoconstriction, and many more. Many causes in POTS are genetic, others are a compensatory reaction. Here are 3 articles from our website that might help clear it up for you: Hyperadrenergic POTS (hyperPOTS) An overview of a POTS subtype - POTS - Dysautonomia Information Network (DINET) POTS: An overview - POTS - Dysautonomia Information Network (DINET) What are the Mechanisms of POTS & other forms of Dysautonomia? - POTS - Dysautonomia Information Network (DINET) This is ONE explanation of what happens in SOME cases of POTS. What you refer to as "regular POTS" is most likely the most common type - the vessels are unable to constrict properly and therefore the body is unable to circulate blood correctly - this causing tachycardia and other POTS symptoms. This is usually caused by excessive vasodilation. The hyperadrenergic subtype is commonly caused by sympathetic overcompensation, meaning that in response to a malfunctioning within the ANS the sympathetic NS overreacts by dumping adrenaline. This is a very confusing and overwhelming issue, even to most physicians. It takes time to make sense of it all and that is why it is so important to be in the care of a knowledgeable specialist. Most cardiologists ( who are the Ones most frequently seeing POTS patients due to the symptoms of tachycardia, chest pain and syncope etc ) are not knowledgeable in the different subtypes, and there is not a standard treatment for ANY of the types of POTS. This is why treatment is frustrating, and usually requires trying out different meds until the right one is found. I have HPOTS but did not respond to many of the typically used HPOTS meds, so there was a lot of trial-and-error involved in finding the right combination. But what counts is that I now am relatively stable on my meds ( albeit not cured ), so we just have to be brave, kiss a lot of frogs and not give up!!!!

@CDNPortGrl - my dysautonomia GI symptoms are mostly GERD, IBS and nausea. I - for the most part - got these under control with Zofran ODT and GERD meds, as well as avoiding big meals but rather eating frequent snacks. I also do better when not drinking while eating - I drink after eating.

@CDNPortGrl - there IS more research going into POTS since long haulers post COVID POTS. The symptoms from it ARE POTS, but many people have a mild form from it, and - hopefully - a temporary one. But since there are so many people discovering POTS symptoms there now is also a greater need to find out more about it. I personally know several people who were diagnosed with post viral POTS and - although affected by the symptoms and even disabled for a while - have made a great if not full recovery after one to two years. COVID has not been around that long that we can truly say if the people will fully recover, and we have not yet seen if Long Hauler syndrome is a chronic dysautonomia. Time will tell!!!!!

I would like to mention that most COVID Long haulers do not seem to be afflicted by the same illness as chronic POTS patients. It appears to be more of a post-viral malaise type condition that is temporary, except for some people in whom the COVID ( and even the vaccine immune reaction ) have triggered a real POTS episode that they would probably have gotten from a different virus, such as Flu etc. as well.

@cmep37 - I do have OAB from POTS, so some of the urgency and frequency is explained by that. But I also experience extreme emptying of the bladder when I have adrenaline surges. For example: when I do anything that stresses me ( positive or negative ) I can pee huge amounts every 10 minutes for hours. The loss of fluid is severe, and I always pee more than I could possibly take in. So an increase in adrenaline can cause you to urinate too much and too often as well.

@Jane Sardelle - I believe the swooshing sound can occur when the blood vessels dilate suddenly to allow more blood to flow to the head, this would especially explain when it occurs upon standing up and walking.

@Special K - thank you for posting your experience. Very interesting! You mention the treatment you use to control the symptoms but you do not mention increase in salt and fluid intake and compression - are you doing this? This is recommended for POTS patients except for those suffering from hypertension. Has your doc discussed this with you?

@angelloz heat and humidity can cause us to develop swelling. It could simply be that, depending where the swelling is.

One of my sisters had a Lumbar puncture once and developed the horrendous spinal headache afterwards. She was bedridden for weeks, and since then she has POTS, including tachycardia and hypertension when standing. I always wondered if the spinal headache could have something to do with the HPOTS, or it was triggered from the prolonged bed rest? HPOTS runs in females of 3 generations in my family ( mother, sisters, nieces ), so either event could have triggered it.

@POTSie78 and @dancer65 thank you both for sharing your Input. I sincerely hope they will be able to find a solution for you. Best of luck! That would make sense in my sisters case, since HPOTS runs rampant in my family!

Recently I have heard of several POTS sufferers that initially were diagnosed with silent migraines, my sister being one of them. I am very unfamiliar with this diagnosis and would welcome anyone's experience with this. Does anyone have this diagnosis? How do the symptoms overlap with POTS symptoms? What is the mechanism behind these attacks? I would welcome anyones Input. Thanks in advance!!!!!!

You know @merkat30 - my sister has a POTS "like" dysautonomia, with all the symptoms except for the tachycardia. she was diagnosed with SFN after a skin biopsy and extensive neurological work-up. But prior to this diagnosis several docs told her that she has migraines despite the fact that she did not have headaches. Apparently there are silent migraines that can cause some symptoms similar to POTS. I really don;t know enough to dismiss this diagnosis but in her case they were incorrect. I wonder if that is the new fashion diagnosis they use when they can't explain our symptoms? I will start a post asking others about it. Good Luck with the phone visit with the new doc!!!!!!