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When I am in the ER or hospital the pulse-ox frequently does that due to movement. It can loose good contact with your skin just from moving your fingers or hands and - yes, long fingernails CAN do that. The sensors are very sensitive. My beepers often go off and the monitor show low O2 but repositioning it always reflects the correct levels again. The nurses and doctors know to tell the difference, there are certain symptoms with true low O2 readings. If they were concerned about true hypoxia they would order arterial blood gases. I would trust the ER staff - they know what they are doing and they are aware of the alarms. Next time it happens and you are worried talk directly to the doc about your concerns. You can always ask for arterial blood gas ( very painful though ).

@Sam4877 - you asked about what meds I take: for my HR and BP I take carvelidol ( BB ), diltiazem ( calcium channel blocker ) and guanfacine ( also called Tenex ). This cardio-mix has proven to be very effective for me but it took years to get it right. Either of these meds by themselves do nothing. Yes - in my case I suffer mostly from excessive vasoconstriction but also get syncope from drop in BP due to vasodilation. When I am too active ( which is essentially just walking too long or standing or bending too much ) my diastolic goes up, the systolic not too much, sort of like yours.

Hi - as many of you may recall in September I had a port implanted and now am receiving weekly infusions of LR at home. I get 1 l LR over 8 hours every Thursday and more as needed. Well - I had 3 colonoscopies in my life and all of them required hospitalizations - either after ( for seizures and syncope and tachycardia and hypertension ) or before ( to prevent the above from occurring and to receive IV fluids during the prep ). Well - I infused 3 liters over the entire 24 hours before the procedure and - although quite unable to stand after the prep - made it with flying colors!!! No seizures during or syncope after the procedure. As a matter of fact I WALKED out and ate in a restaurant afterwards! ( A feat I was not even able to do without a colonoscopy before the fluids! ). All in all I have been feeling so much better, more energy and ability to be active and even get out of the house than ever before!!!!! I wanted to share this first victory with everyone who is seeking support for getting IV fluids for POTS. And I will keep posting these improvements to give testimony to the miraculous effects of IV therapy for some cases of POTS.

@WinterSown - so sorry that you are worse again. I can relate: for the first years of my illness I thought that this is all temporary and every treatment or med was going to be the one that gets me back on track. But everytime the "placebo effect" wore off I found myself still sick - even worse. So I started to fight POTS - only to realize that this had made it worse. For many years I thought just like you: I am not letting this thing get me and I will win and I will NEVER accept my limitations. Then I had to stop working, became disabled and then depressed - because I realized this will never end, cannot be overcome and I lost. … But then one day - after one of many talks with my wonderful PCP who had tried for years to make me realize that this cannot be willed away - I found my acceptance. In stead of giving up I had to change my battle strategy. I was loosing so much valuable time in which I could be enjoying the simple things in life with my family by trying to stay on top of POTS. So I decided that I will do what I can when I can and no longer worry about what I "thought I should be able to accomplish". I started to plan my days so that I could do simple chores, exercise and enjoy family time - just without telling myself what I can do. Now I live every day doing what I feel like - and can - do, do not push myself and create a more peaceful me. Yes - I had to give up control over many things in life but I also re-created a life that works for me and my family DESPITE POTS. Can I do what I used to love - like gardening or hiking or working? NO WAY! But I can tend to my house plants, freeze my home grown produce, cook, do chores … take time for reading or exercising … enjoy my pets and - most importantly - I can still be a good mother and wife and friend and sister etc … I no longer look at what I lost - but by looking at what I can accomplish every day and by the things I still am good at I realize that my life is still very much worth living and enjoying and sharing!!!!!! --- Acceptance is not defeat - it is essential in healing.

Hello @Sam4877 - welcome to the forum!!! I have hyperPOTS and in my case the HR and the BP go up. Diastolic hypertension is typical for hyperadrenerdic POTS. I can tell when my BP is above 130/90 and when it hits 140/100 I am in a surge. 150/100 and I pass out or take seizures. I rarely get tachycardic anymore due to my many cardiac meds but I still develop hypertension frequently, and my BP changes from minute to minute. You mention that your BP rises after running - that is normal but the diastolic should not rise above 90 ( as you mention is does for you ). You must tell your doctor about these readings and keep a log about the BP's to take to him. Are you on any meds at all? You also should be referred to a cardiologist for cardiac work-up and hopefully a TTT. Good luck!

Hi @Gracefulprincess - I am disabled from POTS but 3 years ago had to travel to germany. I would highly recommend asking for wheel chair assistance at ALL airports. I would not have even be allowed on the plane without it because I would have been passed out on the floor 15 minutes into the check-in process. They pick you up from check-in in a wheel chair and take you to your gate where you will be seated with other disabled people and will be allowed to board first. If I did not request this service I would not have been able o go ( my Dad was dying - I had to go! ). I had several airport employees make remarks that I was able to stand up to be "patted down" - so why can I not walk? But that is a small price to pay for the ablility to even make it to the plane!

I can answer that - I was EXACTLY in your shoes! --- When I started with POTS symptoms I first saw my - awesome - PCP. He had no clue why I was passing out and had tachycardia all of the time, so he reffered me to state university for TTT. I had stress echo and TTT and was told I have NCS ( same as VVS ) and "will just keep passing out". So I got on the computer and found info on POTS - it fit. Asked my PCP to be sent to major autonomic center - went there TWICE ( 9 hour drive each way ) and had autonomic testing. They told me I have nothing wrong with me. A Year later - after another 3 cardiologists at my state university - I had another TTT performed by an EP and ( although it was clearly positive for POTS ) was told I am "hysterical". My PCP was not happy with that because he personally saw me pass out all over the place and also witnessed my tachycardia upon standing. Went to another - highly recognized - autonomic specialist and was diagnosed with hyperadrenergic POTS based on both symptoms AND blood tests for catecholamines. I have been treated for POTS ever since. …. DO NOT go with ANYONE not familiar with - or properly trained in - the diagnosis and treatment of dysautonomia. They are confused and most likely will cause more harm than good. I was lucky - the "good" docs in my story realized that I was truly ill but that they did not know how to treat me. They are still my go-to docs and my life is richer because of them - but they were not the ones who diagnosed me. Unforunately it appears that we need a proper diagnosis to be taken serious by the medical community. Do not feel like you are jumping the gun - if you have valid concerns then make an appointment ASAP - the waiting lists are long!!!!! --- Best wishes - you are doing the right thing to get checked by a true professional!!!!

@Caty - they did my catecholamines while I was on meds, I did not have to stop them ( if I did I would have been in the ER before they could complete the upright part!)

I would ask your doc about that.

@dancer65 - I just read your post to my husband and he just shook his head like : they are all the same, lol . I have had POTS for 9 years and really know better but it still happens all the time. The other day I was in my garden and I pulled out a dead plant and then saw another and pulled that one … when my symptoms started I knew to lie down but there was just that one more plant I needed to get … and then I woke up on a heap of dead plants. Why do we do this? I guess it's a mix of frustration, stubbornness and - well - stupidity!

@Eraena - I agree with you, normally in POTS the HR jumps up WITHOUT a drop in BP. It is a normal reaction for the body to counteract hypotension with an increase in HR. It very much sounds like low BP to me. Are you loading up on fluids and salt? Also compression stockings would be helpful in low BP. Fatigue and lightheadedness are also a symptom of low BP but the cold hand/feet and unable to sweat are not. Heat can cause a drop in BP so the heat intolerance could be from that. I would ask for a TTT and also - when you get severe symptoms I would go for IV fluids since they are a typical treatment for hypotension and I suspect they would immediately make you feel better.

Hello @RaniNightOwl - I understand exactly what you mean, I too have the anxiety with the surges. It is a normal symptoms of fight-or-flight. I used to get them at work and my doc told me to go into a dark and quiet room and lie down or sit reclined until everything stops. Sometimes that worked and other times it would start right up again when I stood back up. I am disabled now and can lie down in bed when it happens, so it much easier now. I did talk to a friend who is a counselor and she taught me the following exercise that helps a lot: when your symptoms start sit down with your feet firmly on the ground. Close your eyes and take deep, slow breaths through your nose and out your mouth. While you are breathing imagine you are a tree and you soak up calmness through your feet from the earth ( like roots ) and it spreads through your body all the way to your fingertips. --- It sounds completely out there but it works - and I am not into this kind of thing. But between the deep-breathing, the sitting down and the concentrating on the tree and diverting your anxiety it completely calms you down by both physical and mental ways. --- I think it is a good idea to see a therapist who can teach you stress-relieving methods as well as listening to you. It is a LONG journey learning to cope with this - or any - chronic condition. --- One question: why did your cardiologist determine IST and not POTS? As far as I understand with IST the resting HR is also elevated, in POTS it goes up when you stand. Has he done orthostatic VS to differentiate between the two?

That is what I am doing right now with my daughter. She has been passing out and having tachycardia. I called my specialist and askes what tests they recommend and my PCP ordered them ( she is on a 30 day halter right now and will have the TTT done after that ). Then she can go see my specialist once the tests are done and does not have to wait that long. Especially since it is an 8 hour drive plus her insurance does not cover out-of-state doctors. That way we only have to go once.

Thanks @yogini - that makes sense!!!

Hi - so here is what a surge looks like and what I do to prevent them. Example: I am in the kitchen standing and cooking. I can feel my heart rate going up but there is just ONE MORE veggie to chop. After that I will go lie down - but no, the pasta will be done in 2 minutes. I sit down and ask my husband to finish the cooking but he is busy. So I wait and drain the pasta but my daughter needs something. My heart is thumping, I am getting frantic but I help her, all along warning that I need to lie down or else. " Go lie down!" my husband says. So I go lie down but my thoughts ( and heart) are racing, I am restless, my chest hurts, I am trembling. I remember something else needs to be done and know I should just rest but at this point I am no longer thinking straight. I jump up and rush to the kitchen to get it done and my daughter asks me a question and my husband says: "Why are you up ?" And I blow up because at this time my adrenaline level is through the roof, I am close to tears. So I run back to the bedroom and lie down, at wits end. After 5 minutes of "wrestling a bear" in my head I am starting to calm down and after another few minutes I am back to my normal self but too exhausted to get up to finish cooking or even to eat. ----- Many will know this sequence of events. And when you look at this without comprehending POTS then it just looks like I am a freaky, anxious, irritable ****** person who needs to "get a grip". Although still bothered by these surges my family is very understanding and urge me to lie down as soon as I can feel the first symptoms, but that is not always possible. So - to avoid these symptoms I have come up with these steps: 1) Do all kitchen chores sitting whenever possible. ( I pass out when sitting so I cannot keep a stool by the stove which makes cooking that much more difficult ). 2) Ask for someone to help with timed cooking to keep an eye on time if you need to lie down. 3) Try to only do one thing at a time and let others know that you will not be available for any other activities while cooking ( including home work questions, answering phone calls etc ) 4) Do not do as I did - when the first symptoms appear - RETREAT! Do not agitate the bear! Anyone else have suggestions to add to the list?

Dear @Mikayla - yes, it definitely is worth all the money in the world to see a specialist. I have a wonderful PCP and cardiologist who were both extremely supportive and helpful in recognizing my POTS but neither knew how to treat it. I saw several other cardiologists over the years who all had their "opinions" about POTS - and did a lot of damage. So - when I (after a 12 month waiting period) finally got in to see my specialist it was such a relief to talk to someone who understands all of my symptoms. And over the years he has tried many meds and works with my PCP and cardiologist when they need to be adjusted, plus I can message anytime with a question. At the time I had to see him for the initial appointment my insurance did not cover out-of-state docs so I had to pay, but they gave me a lesser fee due to having no insurance. I used to go at least once a year to see him and now I only go every three years or prn. And he is 8 hours away from where I live - it is usually a three-day event for us. So - YES!!! I would make an appointment very soon with an autonomic specialist.

Here is a curious observation I made: when my POTS symptoms are bad I always urinate excessively. When I get IV fluids this stops and I urinate a lot less, more like a normal person. So: does the increased urination cause the POTS to worsen or does the POTS cause the increased urination? … Also: in "normal" people IV fluids would cause increased urination - why is it opposite in POTS patients? I just found an article about polyuria ( excessive urination ) that lists POTS as a primary reason for polyuria!!!!

@kisekis - there really is no standard for IV fluids that I know of. My specialist ordered 1 l over 2 hours once a week. That is beneficial for many, just in my case it was not enough. There are members on this forum that receive IV fluids and all the orders are different. One member gets weekly infusions, another member gets them every other day and one member even gets them daily. In m case I now get weekly infusions.

@voxel - it is different for everyone. In my case IV fluids correct both hypo AND hypertension. But I have hyperPOTS - it will not work like that in other types of POTS. It all depends on what the mechanism of your dysautonomia is ( vasoconstriction vs vasodilation vs neurotransmitters vs SFN vs low blood volume … )

Yes - too much salt without enough water is bad. You want to increase BOTH.

In certain treatment refractory patients they do IV saline - my specialist gave me an order twice for 1 l NSS over 2 hours weekly. It did not help me - personally - all that much but 16 - 24 hours of fluids at 125 ml/hr has shown great improvement. Currently I have an order for 1 l LR over 6-8 hrs.

Unfortunately I do not know of any neurologists - my symptoms are mostly cardiovascular in nature. - Have you checked on the Dinet physician list?

I have hyperPOTS which causes excessive vasoconstriction. I used to work as a nurse and would frequently pass out and even take seizures at work - even while sitting. This was always preceeded by a brief episode of feeling ice cold and tremors and people who were there always said I would get a blank stare and fall out of the chair. I also have had seizures and syncope while lying in bed ( often in hospital for bad flare ). The seizures are considered convulsive syncope - caused by no circulation in the brain from vasoconstriction. SFN can cause vaso constriction or vasodilation which causes syncope and this not limited to being upright. Are you seeing a neurologist? I would find one that is specialized in ANS disorders.

@joiedevivre - I have hyperadrenergic POTS and NCS. My BP goes both up AND down. Over the last 8 years I have been admitted for IV fluids to stop a bad flare with severe orthostatic intolerance several times a year. Sometimes the ER would only give me one bag bolus but that only would help for a short time and then the symptoms came back. But when my PCP would admit me for 24 hours IV fluid the flare would always stop completely and I was good as new. Some docs would refuse IV fluids b/c "I am able to drink fluids". These docs completely miss the point: some people have hypovolemia and the IV fluids help for that and stop POTS symptoms, but in my case it is that the fluids help counteract the ANS to constrict all of my blood vessels which interrupts the bodies faulty mechanism. Noe I have a port and get weekly infusions at home and feel great!!!! --- There is an excellent article about POTS and IV fluids on thedysautonomiaproject website, you can print it out and give it to your cardiologist. ( I have a wonderful PCP and cardiologist and they have learned along with me from the articles I provided. ) Next time you get bad bring that article and demand fluids and see how it goes - most likely it will help you too!!!!

Since I am properly medicated (well - as "properly" as it gets) I am doing much better in the am and get worse as the day goes by. But when I was unstable it did not matter what time of day - I could pass out any time. My dizziness was always there but not severe. It was mostly that when I was walking I would all over sudden feel like a trap door opened and I was falling - but just for a few seconds. Only much ;ater did I develop longer spells of dizziness and Meclizine did help for that, in addition to being very inactive. That is still the reason I no longer pass out all of the time and my surges are less: I am very much limited in activities. Lots os rest periods and very little walking. A a matter of fact - I barely ever leave the house. But - I am standing!!!!