Pistol

@Nin - that was fast!!! I am glad you got to talk to him and I hope any advice he gave you will be fruitful!!!

@Nin - the Ups and Downs of POTS are ( unfortunately ) part of the deal. It took me years to understand that feeling good does not mean I am cured - and getting bad again after a good spell does not mean this is it from then on. There are so many triggers that can set us off - weather, diet, heat or cold, stress, illness, too much or not enough exercise, allergies, overstimulation … the list seems endless 😕! I kept a diary of my days for a while and figured out some of my triggers. There are different ones each season - right now it is insect bites and allergies, as well as heat intolerance. And sometimes I can just tell that after 3 good days I am due for some bad ones soon … the trick is to enjoy the good days and be hopeful on the bad ones. Hang in there 🤗

@CallieAndToby22 - I agree with @RecipeForDisaster. Hyponatremia is a side effect of nocdurna and symptoms you describe could be it. According to the official Nocdurna patient information website your symptoms NEED IMMEDIATE MEDICAL ATTENTION. Please contact your PCP immediately or go to your nearest ER or clinic. They can check your sodium level and correct any depletion. What is the most important information you should know about NOCDURNA? NOCDURNA may cause serious side effects, including low levels of salt (sodium) in your blood (hyponatremia) which may be life threatening, causing seizures, coma, trouble breathing or death if not treated early. Stop taking NOCDURNA and call your doctor if you have symptoms of low salt levels in your blood: headache, nausea or vomiting, feeling restless, tiredness (fatigue), drowsiness, dizziness, muscle cramps, change in your mental condition such as hallucinations, confusion, decreased awareness or alertness. You should not take NOCDURNA if you are at risk for low salt levels in your blood, such as if you drink a lot of fluid or have illness that can cause you to have fluid or body salt (electrolyte) imbalance or, if you take certain type of "water pill" called loop diuretic or glucocorticoids including inhaled steroids. Tell your doctor if you have a fever, infection, or diarrhea while taking NOCDURNA as these can cause you to have fluid or electrolyte imbalance. Your doctor should check your blood salt levels before you start or restart, within the first week and 1 month after you start taking NOCDURNA, and every so often as told by your doctor, with testing more often if you are at risk for low salt levels, such as those 65 years or older or take certain medicines that increase your risk.

@CallieAndToby22 - could it be that nocdurna ( I am not familiar with this med ) stays in your system for a while and continues to interact with your other meds? Have you checked how long it stays in your system?

Thank you, @Chuske. That makes sense. Hmmmm - makes me wonder. My family has a 3 generation of HPOTS history, yet my one sister has all of the symptoms minus the tachycardia ( very hypertensive, however ). She also had a lot of added symptoms that we Others do not have, like paresthesias, blurred vision, slurred speech at times … since she does not have the tachycardia upon standing she has currently a diagnosis of autonomic neuropathy ( all Others fir the description of HPOTS ). Could that be ME?CFS? She has extreme fatigue and cognitive issues/memory problems, high BP, adrenaline surges … however she does not have the orthostatic and exercise intolerance as we others do. She can walk and ride a bike and exercise on a rowing machine but she cannot concentrate and gets easily overstimulated to the degree that she has to go to bed. What do you think - is that like what you experience?

Take a deep breath, exhale slowly and recite Louis Armstrong: " And I think to myself - what a wonderful world …. " 😉

@issie - while reading over the article you posted ( thanks ) I realized that so many symptoms of ME/CFS are the same in POTS! What exactly, in your opinion, is the biggest difference between the two? Is it that ME/CFS has less cardio-vascular involvement?

A stress test can do 2 things: detect or rule out any blockages or damage to the heart and it can cause your cardiac symptoms ( unpleasant but very helpful in coming up with a diagnosis ) so they can see it happening on the monitor. But mostly they want to make sure that your heart is OK and you don't have any blockages.

@Starrynight I had several stress tests for chest pain related to HPOTS. They tried 2 different times to do an exercise stress test but I was not able to walk on the treadmill that long and my HR and BP went through the roof both times. Then they did a chemically induced stress test 2 times and I passed that ( they inject a stimulating med that gets your heart racing as if you are jogging on the treadmill while you are simply sitting in a chair ). Don't worry about the stress test, nothing can really happen. The doctor is right in the room with you and they have you hooked up to monitors. I too experience unexplained joint pains and flu-like symptoms at times. I was told that in my case they suspect it being from the dysautonomia.

So sorry @MTRJ75!!! 😖 I would think that AUTOMATIC DYSFUNCTION would mean you are automatically too dysfunct to work .. ? But all jokes aside - once you are denied for the second time you will need a lawyer. I was denied twice as well ( despite the fact that my employer and doc and family begged me to stop working due to the frequent faints, seizures and concussions I experienced at work! ). The next step would be a hearing with an administrative Law Judge, which can take up to 18 months to schedule ( different in different states ). Once I was able to tell the judge face to face what dysautonomia looks like he awarded me SSDI on the spot. Hang in there - it's our government in action!!!!!

What came first - egg or chicken? -- The symptoms of POTS are very scary, so naturally we will be anxious when we have them ( who wouldn't ? ). That means we are anxious OF POTS. Other times the symptoms can feel LIKE anxiety ( tremors, excitement, racing heart. high BP, cold and clammy hands … ), in which case we are anxious FROM POTS. At yet other times we can become anxious because we are human ( everybody gets anxious at times ) and then our confused ANS goes into Fight-or-Flight mode, which then triggers symptoms making the anxiety worse because we are anxious OF POTS which then makes us get anxious FROM POTS …….. Here is a quote from this article https://www.potsuk.org/managing_anxiety Anxiety does not cause PoTS. Symptoms of PoTS and anxiety are similar and can be difficult to tell apart. It is important to discuss anxiety because being anxious can affect quality of life and make symptoms worse. It makes sense that if one aspects of our physical health is compromised, we need to optimise other aspects of our life, including our mental health, to be as well as possible, and enjoy life as much as possible. Anxiety is common, and it makes sense that people feel anxiety at various points of their PoTS journey: before diagnosis, when they don’t understand the cause of their symptoms because even after diagnosis symptoms can be scary because chronic illness creates financial, relationship and worries about the future

Hi @Chuske - yes, I stand up every hour, even if just for 1 minute. When I get that bad I stay in bed but get up once or twice an hour and do leg exercises 3 x a day. I have a rowing machine which is perfect for me. I try to do it at least once a day for 1 minute on bad days, more often on regular days. In the way of leg exerises in bed: I place a pillow on my shins with knees together and bent and then bring the legs down to have heels touch the bed and back up. I do this several times. Then rest and do the pedaling in the air. rest and straightening legs, heels on bed, and push the back of the knees into the bed while also squeezing the butt - this is harder than it sounds but very good for leg muscles. Also: While on your back lift leg off the bed and exptend sideways several times, then switch to other leg. Another helpful exercise is lifting soda bottles with your arms while lying down. And anything that strengthens your abs is good for regulating circulation. --- As you see - there are many options of staying active and improving your circulation while stuck in bed. Yes - I do them even when not sleeping. Actually - doing these exercises about 30 minutes before wanting to go to sleep helped me as well. Also drinking a big glass of water before bed. And I have a prescriptions for Lorazepam as needed - so sometimes I take one of those if nothing else helps. What also helps is going outside in the sun during the day, at least once. This does something to the body to make us tired in the evening. Do you have a yard or balcony? Try to lie down - or sit - outside for at least 10 minutes a day.

Thank you for sharing, @MTRJ75. Very interesting!!!!!

@Clueingforlooks - I was told by my physicians that normally MCV etc is elevated due to either high alcohol use or B12 deficiency. But in most cases slightly elevated values do not concern doctors since in some people they just run high. Have they checked your Ferritin levels? This is an indicator of how much iron your body stores. Someone on this forum once mentioned that this often is low in POTS, so I had it checked and indeed - it was low, although I had normal iron. I took iron supplements for a while and my ferritin came up, so I stopped. I have read that macrocystosis ( high MCV, MCH and MCHC ) is caused because the RBC's are too big and therefore carry more hemoglobin per cell, and that this will not necessarily affect the HGB value in the lab. In my case the hgb reading was low-normal but my RBC's were low and the MCH etc too high - meaning exactly what was said above. So it was a type of anemia, with the ferritin being low. I had to supplement in both B12 ( found to be low ) and ferritin. So maybe you should ask to have B12 and Ferritin levels checked?????

@Nin - here is an exerpt from an article on HPOTS from our information resources page: DiagnosisThe criteria for diagnosis shares many factors with POTS; including the presence of symptoms for 6 months or longer, a Head-Up Tilt Table Test (HUTT) shows tachycardia of 30 BPM or above 120 BPM in the presence of orthostatic intolerance within the first 10 minutes of upright posture. Patients are diagnosed with the hyperadrenergic form of POTS based on an increase in their SBP ( the higher number ) of at least 10 mmHg upon standing or during the HUTT with concomitant tachycardia or serum norepinephrine levels of above 600 pg/ml when upright. (Grubb, et al, 2011) An autonomic specialist ( usually cardiologist or neurologist with specific knowledge in dysautonomia ) can diagnose HPOTS.

This is the case in my family as well. We all have high MCV and MCHC, meaning the red blood cells are too big, which results in "thick" blood. We all were born with this. I believe it could lead the ANS to be triggered to vasoconstrict b/c it needs more pressure to pump thick blood ( my theory only ). That may also be the reason why IV fluids help us so much!!!!

I have cervical radiculopathy that radiates down my left arm and makes my pinkey and ring gingers numb. I've had it for 6 months, off and on. PT helps greatly, they taught me exercises and trigger points as well as applying heat, traction also works for me. Medication wise I use a muscle relaxer ( Flexeril 1/2 tab ) at night as needed and it helps the next day still.

@Chuske - you can't ask too many questions here, that is what this forum is made for!!! --- I personally have found only scheduled IV fluids to finally stop the high adrenaline related symptoms, and so have my sisters that suffer from the same type of POTS. But we all have a quite specific type of HPOTS. I know that there are several other members here that also benefit from IV fluids for the treatment of POTS ( all types ). I am aware ( and sorry ) that IV fluids are not a recognized treatment for POTS in the UK, but maybe you will find an understanding and more openminded physician that is willing to give it a try. Just one liter of NSS infused over at least 4 hours can totally interrupt the faulty reactions of the ANS and provide symptoms relief. But here is an article from a study by Dr Blair Grubb, one of the leading autonomic disorder specialists in the US. It lists medications that can help for HPOTS. SSRI's especially help with the high adrenaline related hyper feelings you describe, since they balance the levels of certain neurotransmitters. What was MOST pleasant and helpful for me and my sisters is Bupropion, a SNRI ( works directly on norepinephrine ). It GREATLY improved energy, sleep patterns and mood, which allowed for a more balanced sleep and activity pattern. Unfortunatley I developed acne on it and had to stop it, but I take Escitalopram ( SSRI ) instead and it also is extremely helpful. Maybe your physician will consider one of these medications ? Here is the article: http://theoicenter.com/Medical-Care/POTS-Hyperadrenergic-Subtype.html Medications For Hyperadrenergic POTS In hyperadrenergic POTS, there is an increase level of norepinephrine when standing. The following recommendations should be considered:1 Therefore, patients often respond best to agents that block norepinephrine or its effects.2, 3 One agent that is particularly helpful is clonidine HCI in either pill or patch form. Start the oral form at 0.1 mg PO 1 to 2 times a day and gradually increase as needed. Once a dose has been found that works, the patch form of clonidine is quite useful. It provides a constant and continuous amount of the drug for up to 1 week at a time. The combination of labetalol and carvedilol works in some patients. Use of only one is less effective because of the potential to make symptoms worse by the unopposed stimulation of carvedilol. Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and SNRIs (norepinephrine reuptake inhibitors) are useful in select patients.

I agree with @KaciCrochets, vitamins amd minerals are often deficient in POTS. I was very low on Vit B12, Vit D and Ferritin. Deficits in the levels of these substances leads to fatigue, sleep disturbances, cognitive issues and more - once I supplemented ( I am taking maintenance supplements on all 3 ) sleep and energy improved.

@Nin - I have HPOTS and tried Midodrine ( amongst other POTS meds ) and it did not affect me negatively - it just did not help in my case. I personally have to disagree. Especially HPOTS requires different meds than some other, more common types of POTS. The reason for that is that most POTS symptoms are caused by excessive dilation of blood vessels, but in HPOTS we suffer from excessive CONSTRICTION. Therefore any vasoconstrictors ( frequently ordered for POTS ) are contraindicated and vasodilators help ( yet they are often contraindicated in other POTS types ). Also - often in POTS people have a low to normal BP, whereas in HPOTS the BP tends to run high - another reaon to be careful with simply treating all POTS the same. This has definitely been the case for me - I take high doses of several BP meds that would knock other people with POTS out, yet I have greatly improved on them. So, in other words - no, I do not agree. Treatment in POTS is highly individual, a lot of Hit-and-Miss. This is even documented in many, many articles dealing with the frustrations of POTS treatment. As with ALL illnesses - physicians need to treat the PERSON and the SYMPTOMS, not the name of the disease!!!!!

@WickedMindz - yes, I have NCS as well as HPOTS. Eating a heavy meal ( think Thanksgiving or Christmas ) will divert the blood to the GI tract to aide in digestion, and away from the brain. This causes feeling tired and lazy in normal people but it can easily cause us to develop worsened symptoms, even fainting ( which I used to do generously ). That is why smaller but more frequent meals are recommended. eating more protein and less carbs has helped me with that as well.

@Chuske - good job at taking care of yourself!!! I assume you have mentioned this before but: are you taking any medications for your POTS symptoms? Depending on the type of dysautonomia you have there can be different meds that help. Once my docs found the right medications I was able to stabilize to a degree where this condition became bearable. But still - listening to the everchanging demands of the body is essentially what helps the most. Every day is different, therefore I have to have the ability to do WHAT I can WHEN I can do it. For me that meant to stop working and staying mostly at home. If I know I have to be active for any reason ( such as appointments etc ) then I take precautions by resting and increasing my fluids beforehand. Good that you continue to exercise. This has been essential for me to maintain my strength, fight fatigue and provide proper sleep patterns.

@MTRJ75 - this is an ongoing challenge for many of us. I too have been doing good this week and have been able to get a lot done. Since I am currently able to do light gardening chores outside and also do household chores I leave it at that - bending, stooping, carrying watering cans, mopping or vacuuming all counts as exercise and actually taxes me more that a few minutes on the rowing machine. So I do not add any other exercise. However - if I am not able to leave the house or am not feeling well I do the rowing machine 2 times a day for a few minutes - it helps circulation and the joints etc. What I have found is to schedule your exercises around your body - not the other way around. Find out when you feel the best ( for me it is mornings ) and then exercise MODERATELY, followed by rest until you feel energized again. This - for me - is the clue: to follow all exercise with rest. And to not do anything when you are not feeling good, it is your body signaling you that you are not up to anything that day. If I fight this I pay big time in the following days!!!! I also schedule Off-days following busy days, that way I can recoup and not go into a flare.

@Mommy1989 - great to hear you ordered compression hose, let me know how they work!!! No doubt will they require a bit getting used to, especially in warm weather. But if they help you feel better - they are worth the nuisance!!!! The criteria for POTS is 30 BPM or above 120. So, in other words: if you start out 80 BPM when sitting and jump to 110 BPM when upright - that still is a 30 beat jump. And it is important to check if the HR stays elevated while you are upright - if it goes back down after a few minutes it may be a normal response to being upright. Good Luck with the compression hose - and everything else!!!!!! Keep us posted!

Yep - that is exactly what I expected them to say!!!!! Sinus tachycardia and PVC's ARE harmless rhythms, but if they occur every time you stand and go on for hours they are not the everyday sinus tachycardia! This is what used to happen to me - until I responded to the ER docs " You are perfectly fine, nothing is wrong on the monitor or with your BP" with the suggestion of taking orthostatic Vital signs. As soon as I stood up - BINGO! - HR and BP went soaring. They would then proceed to at least give me IV fluids ( a instant, temporary cure for POTS in many cases ) and send me back to my PCP. I even used to pass out constantly and take autonomic seizures ( witnessed by doctors, on monitor and even EEG ) and they claimed I made it up. For real!!!! I hope so. Just inform him/her of your suspicion of POTS, what you have found out about it and how your symptoms go along with this condition. Hopefully your doc(s) will order the proper testing and then agree to refer you to a specialist.