Pistol

@Peter Charlton - when I first became severly symptomatic I went to an autonomic dysfunction center here in US (Vanderbilt) twice. They went over my TTT results which showed NCS, gave me a neuro exam and did autonomic testing and said there was nothing wrong with me (despite numerous monitored episodes of tachycardia, hypertension and syncope). So I went to see another renowned specialist here ( Dr Grubb ) and he spent 2 hours of careful listening and told me I had hyperadrenergic POTS. He then ordered catecholamines on the spot and 2 weeks later was able to confirm my diagnosis. Obviously autonomic testing does not catch all dysautonomia and if the "specialists" are not willing to take ALL test results and the severity of SYMPTOMS into account then they will not be able to diagnose you properly. I agree with catecholamine testing - that confirmed my diagnosis and therefore provided treatment options. P.S. I also have T-wave abnormality which seems unrelated to POTS and is considered harmless.

I second what @RecipeForDisaster recommends - slower infusions show better results. I run mine over 6-8 hours and this is way better than the faster infusions. Also - I have found LR to be more effective than NSS. I seem to retain some of the fluid from Saline but not from LR.

@joiedevivre - congratulations on having a good GP! Mine has been wonderful - without him I do not know where I would be now! He also went out on a limb for mw by ordering IV fluids years ago - and I have continuously proven by way of hospital records that my symptoms and vital signs improve with IV fluids!!! - My autonomic specialist has given me a prescription twice for 1 liter of NSS over 2-3 hours weekly for 1 month. This has always been helpful but has shown not to be enough in an acute flare (for me), but many other patients have benefitted from this protocol. It might be a good idea to start with that and then see how you react to it, as well as monitoring how you do without those fluids afterwards. That is a good way of determining your body's response - but you have to monitor everything, from your symptoms to your vital signs in order to show actual results ( rather than saying you feel so much better ). -- I am so happy your doctor agreed to try this - you have good taste in docs!!! Good luck - I get IV fluids weekly at home through an infusion port and have seen miraculous results. You are welcome to PM me if you have any questions regarding this treatment. Good luck!!!!

I would like to add that POTS, NCS and OH are only the types of dysautonomia that cause orthostatic intolerance. There are several other dysautonomias that do not necessarily have to cause those types of symptoms. Most people on this particular forum deal with orthostatic intolerance symptoms.

Way to go @blizzard2014 - great how you are sticking to the new diet! You make it almost sound like I want to come over for dinner! I am happy this working so well for you. You must feel more energetic with such a healthy diet - and the improved blood sugar levels should really help with you feeling better too. Don't worry about the worsening POTS symptoms - that is completely normal after surgery, it took me a long time to go back to my "normal" abnormalities when I had surgery. Just take it easy, do a little more every day and continue the good job of taking good care of yourself! Be well!

I totally believe that even smaller infections can put enough stress on your body to trigger symptoms of POTS. And two in a row are not that small either! Whenever I get even the sniffles for just a day I pay for it with worsening symptoms, even needing IV fluids to get me back on track. Sorry to hear this happened to you - just rest and hang in there! I hate it too when a little thing like that causes this and then we have to slowly recondition all over again! Frustrating! Wishing you quick healing!

That is GENIUSLY stated! Diddo! I used to be underweight all of my life - since being disabled and inactive I have gained 20 lbs! But guess what - since I get weekly IV fluids the weight has come off steadily, without trying! A lot of it must have been retained fluid that now is coming off since the fluids create a better balance (I guess???), plus I have so much more energy that I have a spring in my step and a smile on my face all day long.

@peachychou123 - I have been on Carvelidol for over 5 years and it is still working for me but only in combination with Diltiazem.

In my case it did, I tried several BB's and they either did not help or they did not work long enough. Carvelidol is what I have been taking for 5 years (increasing the dose slowly). Then we added Ditiazem (calcium channel blocker) and that helped for the vasoconstriction/cold hands and feet/ chills and tremors. I take the aximum dose of it. This combination has been the best treatment for tachy/PVC's/hypertension for me. --- You asked about what other meds help with hyperadrenergic - my specialist recommends SSRI or SNRI ( I am in Lexapro and my sister (also has hyperPOTS) is on Wellbutrin, she has made a great improvement on it!!! He also uses Modafinil but I could not afford that, so I take Ritalin and it helps with energy and brain fog. Other people take clonidine (I could not tolerate). --- I take other meds too but these are the ones most helpful for my hyperPOTS symptoms. But the best emergency treatment for me is IV fluids. I get them weekly at home and they help for everything POTS related. Just yesterday I woke up really bad and had to stay in bed si I called the nurse (normally she comes Thursdays) and dhe is coming today instead to hook me up. In about one hour of them - I run them over 8 hours - I will be up and "running"! I was not sure why I got bad yesterday but today I woke up with a cold - that'll do it! ---- These are pretty common meds for hyperPOTS, maybe you can discuss the options with your doc? Good luck - be well!!!

Yes - and I am so sorry @Nathalie. I have hyperadrenergic POTS since 2009 and I have seen many times that it waxes and wanes. As soon as I find a med or treatment that works and am convinced that my troubles are over - I get either a flare or another symptom. Or else I start with the same symptoms again. - Having said that I want you to be aware that this is the nature of the beast: we cannot control what happens to us, we have to constantly be aware of our ever-changing symptoms. BUT - we can adjust to the symptoms as long as we do not try to push through them. I have found that when I get bad and rest and then slowly add targeted exercise I can get back to my "tolerable" state rather quickly. The problem is that when we become ill and have to push through that makes everything worse. -- Yes - it is normal for dysautonomia to change throughout your life because our bodies change, as well as our circumstances. And we are just extremely sensitive to ANY change. --- I wish I had better news or a better experience to share but it is what it is. And - on the bright side - our symptoms do not always change to the worst, often we find periods of improvement!

Hi @kkirsten - this sounds familiar to me. I have hyperadrenergic POTS and have the exact same symptoms - I know exactly how it feels! The cold hands and feet and trembling are - in my case - caused by extreme vasoconstriction due to excessive sympathetic overcompensation ( in other words: the ANS is overreacting ). There often is also yawning involved ( the body trying to recover more oxygen ). The PVC's are a sign of an irritable ANS and yes - they are painful and frightening!!! The chest pain is - as I have been told by my local cardiologist - often caused by both the irregular heartmuscle contractions from frequent PVC's as well as change in circulation. This often also causes shortness of breath. --- It is typical to have normal echo and EKG with POTS - because there really is nothing wrong with the heart itself. It is the brain telling the heart what to do that is not working - and it is the part of the brain that is NOT controlled by your own will. --- In my case the symptoms you describe have greatly improved with meds - I take Carvelidol and Diltiazem as well as many other meds for POTS, but these two have had the greatest impact on the symptoms you describe. Please be hopeful - it is a long road but there is a lot of treatments out there, we just have to try them and listen to out bodies! --- Best wishes for healing - be strong and hopeful!!!!

I took Metoprolol, Bystolic and Carvelidol (which works the best for me). If Propanolol is making you short-of-breath you must let your doctor know since he will want to change it. Good luck!!!

Hi @lamp_girl - I did not really notice a worsening of symptoms during my periods ( I have hyeprPOTS ) but I know of many women who do. It is supposedly due to the hormonal imbalance during that time. I did however notice a severe worsening of symptoms once menopause onset ( same theory ).

I have hyperPOTS and was ordered pyridostigmine. It immediately raised my BP and made me feel terrible. I stayed on it for a while ( do not remember how long ) but eventually was told to stop it. My effects were immediate.

Have you had xrays of your shoulder or seen a chiropractor for this?

@andybonse - to answer your last post: yes, I do get lightheaded while lying down or sitting. I actually have passed out many times while sitting (if I was over-stimulated). This has stopped since I am able to restrict my movement to my tolerance.

My mother and sister also have POTS and they both have been confirmed with mercury in the body from old tooth fillings. They have been treated with the chelated supplement and had their fillings removed but still have POTS

Hello @RubberduckzillA - I have hyperadrenergic POTS and take seizures due to excessive vasoconstriction and no circulation in my brain, this being with hypertension. The seizures appear exactly like grand mal seizure and I am unconscious during them. I also have syncopal episodes when my BP drops. Both of these are caused by dysautonomia. But I do not have the weakness and tremors like you describe. I do get tremors when I am in a surge but not a severe as yours. I would very much go to a neurologist since I do not believe the weakness/ inability to stand/ muscle pain and coccyx pain are normal POTS symptoms. Please notify your GP and have them evaluate you ASAP. Best wishes!!!

Hi @lamp_girl - this is something I was just diagnosed with. I have IBS and severe GERD from POTS but recently developed symptoms of gastroparesis. I had a gastric emptying study done and it was normal but my gastroenterologist says he thinks my gastroparesis is transient, that it shows up during flares and goes away when I get better. My symptoms are severe nausea, being full after very little food, throwing up undigested food hours after eating, bloating and heartburn. When my other POTS symptoms improve these stomach issues go away too.

@Mikayla - that is true for dysautonomia and hence do uninformed doctors blame it on anxiety. Our symptoms are scary and the never knowing when it hits makes it worse too, so it is no wonder we are scared - but the anxiety is caused by the symptoms, not the other way around. Brain fog and frustration over symptoms and the dismissiveness of the medical community and uninformed family and friends contribute to feeling depressed b/c often we are alone in our plight. --- I am sorry about your new GP, I would not stay with him since he is not up-to-date on dysautonomia and will not be able to treat you for it. Although you will soon see a specialist - you will still need a knowledgeable cardiologist or PCP to help you with the everyday up-and-downs. -- You are doing a good job informing yourself - that's what we need to do when the docs don't. My PCP had never heard of POTS when I suspected it but he listened to my research and learned along with me. Now we are an unbeatable team and he works well together with my cardiologist and autonomic specialist. Look for a doctor who is open to learning about dysautonomia and listens to you. Best of luck - keep us posted. And ask away -- we all have been through it!!!!!

@peachychou123 - you mention in your last post that you were feeling better on propranolol but stopped because you were worried about developing diabetes and your POTS got worse since then. Here is a question: did you discuss stopping the BB with your doctor and did you stop according to his schedule? ( You must stop them very slowly and gradually under the supervision of an MD ). And also - did you experience actual high blood sugars that led you to believe you should be concerned about diabetes or was it something you felt might happen if you continue the BB?

@p8d Yes - I have hyper POTS.

@WinterSown - I so share the love for cooking and experimenting with new recipes! Although I function best in the am and my abilities to be active dwindle the later the day goes on I enjoy cooking for my family. That is why I often prep everything I need in the am and then just throw it together before dinner. Granted - some days I am too fatigued by dinner time to eat but I still had fun cooking! --- You mention that you feel better after a good walk - that reminds me of my mother. My specialist believes she too has POTS but in her case no one knew what that even was ( she is 87 years old ). She had fainting, surges and fluctuating BP's including severe hypertension starting in her 40's and had to stop working in her 50's due to this ( sounds like I got it from her ). She is an avid walker - to this day she says that a good walk in fresh air cures her symptoms! Today she lives in a senior complex and is one of the most healthy and active person there and I believe that is due to her walking all of her life. So - keep on trekking!!!!!

I definitely see a BIG difference from getting slower IV fluids. I have received IV boluses ( 1 l as fast as it will go in ) before b/c the docs felt the fluids help b/c they thought I must be dehydrated. But over the years - and after many ER visits and hospitalizations - it has become clear that my BP and HR ( as well as orthostatic intolerance ) improve considerably by getting LR ( vs NSS ) at 125 - 150 ml/hr. Anything faster is useless. I believe this is because the slower rate and longer administration time improves intra-vascular pressure and therefore stops the ANS from dumping out adrenaline which constricts blood vessels. This theory is the only one that would explain why - proven in my medical record - my symptoms/HR/BP improve. Faster infusions give shorter results - longer ( and slower infusions ) give longer lasting results. It may not be the same for others ( since many people DO need the fluids to stop POTS from dehydration or hypovolemia ) but in my case this is the only theory I can approve of in my own personal case. --- Also: when I get infusions of NSS ( normal saline ) I tend to swell up like the Pillsbury dough-boy. L R infusions do not have that effect on me plus they seem to have longer-lasting effects.

@isa5 - you just summed up what meds are supposed to do for dysautonomia patients: they will never CURE us, but they will make us able to do what we need to do OURSELVES to improve. If the meds are working then we will be able to exercise, tolerate liquids and recondition so we can resume a more normal life. If we think a medicine will make us better overnight … well - then we will have a rude awakening. I am very happy you posted this because many of us - myself included - do ( or have in the past ) relied on meds to be the cure-all.