Pistol

The readings depend on what type of measuring device you use as well as your arm position. So yes - it is normal to have such vastly different readings depending on the type of device you use. Digital readers are commonly less accurate and also more sensitive to positions, especially the wrist type. Old fashioned pump-up meters are the best ( I use one ) and they are less affected by arm position.

They could - best thing is to try them out.

@Sam4877 - the correct way to measure your BP is with your arm resting at heart level and relaxed. I assume that the 24 hour BP monitor takes that in consideration, it is probably a different device.

Hello @erinlia - this happens to me when i have too much norepinephrine in my system, I start freezing and shivering ( amongst other things 🥴). I was told that it happens because the adrenaline causes the blood vessels to constrict which in turn causes us to be cold. It also causes less blood to go to the brain, causing dizziness, brain fog etc. It is kind of like going into shock.

Dear @Sam10 - this has happened to me more often than I can remember. I would feel better for a little while and out of nowhere I would get hit with the fatigue, ectopy, brain fog etc ... so depressing to keep getting thrown back into the abyss!!!! But in my case I always had to wait it out ( still do ) until the flare was over. For some reason many of us have problems right now, I think it is the change in weather - but it can also be that we tend to get easily dehydrated when it gets warmer. When I get like that I simply do what my body demands: I rest, I drink, I eat salt ... then I SLOWLY start mild exercises once I start to feel a bit more energetic. That can be one week or it can be one month .... just hang in there. And if your doc prescribes meds they are usually worth a try. How else will you get better if you don't try? I always tried, even if they ended up not working or gave me side effects. Without trying i would not have found the ones that in the end helped me.

@Scout - I have not had COVID but I would like to suggest that - if you ( hopefully ) test negative - the dry cough could be related to allergies. I know you have winter over there now and there could be a lot of allergens in the air.

@Starrynight - I am sorry this happened to you. I know first hand how it goes: first sign of a good spell I try to cram in whatever I have been holding off on doing b/c I know I only have so long before it's "bedtime". That is unfortunately the wrong thing to do, and I mostly try a different approach now. Whenever I feel good I still avoid obvious trigger - that includes being too active. I go back and forth between being active and resting before I become symptomatic ! That seems to make the good spell last longer. And I continue to avoid all obvious triggers. That way I can sometimes ride out a good wave for quite a while. I think your BP surges are not related to SVT ( it does not cause hypertension ) so when you go to the EP stress the dysautonomia. He may just get hung up on the SVT and disregard the POTS symptoms - don't let him do that. It is always helpful to make a diary of your BP's, especially when they run high like that. My autonomic specialist likes us to write down the BP's along with the symptoms and suspected triggers during surges like that. This would be something the EP would have to address. My sisters - who also have HPOTS - run extremely high BP's when in a surge, despite the meds they take. When they cannot get IV fluids ( helps for the hypertension immediately and stops a surge in its track for them as well ) they use an emergency medication. The one responds well to Clonidine ( my other sister and I cannot tolerate that ) and the other one used Hydralazine. So it would be extremely important for your cardiologist to prescribe an emergency medication to lower your BP when in a hypertensive spell like that. 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..

Hi @statesof my "crash"-symptoms were palpitations, extreme fatigue, general weakness, cold hands and feet ( despite the heat ) and brain fog. My husband said I looked gray. In the past this would have increased my BP but it does not appear to rise my BP as severe as it used to, thanks to my meds and IV fluids. I had to stay in bed until I got an infusion the next morning, it completely took care of all the symptoms. ( I have a port and can infuse a liter 3 times a week if I need to ). You asked why elevation changes affect me like this: I believe it has to do with a change in barometric pressure. The pressure outside of our bodies must be affecting the pressure inside of our blood vessels and therefore change the autonomic tone. Strangely the elevation change on the way home did npt affect me - maybe because my body is used to it?

@p8d - permissive Hypertension means that they purposefully allow ( permit ) your BP yo run high. They do this for my sister who has autonomic neuropathy with at times severely elevated BP's. Im her case they were not able to keep her BP's from spiking, so they said that as long as she stays below 150/90 she is OK. This would be too high for other people but in her case it is acceptable as a upper limit. It is possible that you are overmedicated with these meds. Depending on the dosage you may need to ask your doc to decrease? In my case I took Carvelidol. Diltiazem and Guanfacine with moderate relief of Hypertension, but once I started on weekly IV fluids I no longer needed those dosages b/c my BP had stabilized and ran 90/50. I decreased the Diltiazem but still ran low. Recently I weaned off the Guanfacine ( I took only 0.5 mg ) completely and now run more in the 100/60 range.

They usually recommend the elevate the head of the bed, I believe. Personally I do better with the FOOT of the bed elevated.

@Scout - the BPs you list are like mine. Earlier this year I was in ICU for a week and they had the monitor next to my bed set to take my BP every 10 minutes. Every reading was completely different than the previous one - and I was on bedrest!!! I also took 3 autonomic seizures while there and they were all 3 caught on monitor and showed that right before the seizure my HR and BP shot up.

Huh - @KiminOrlando wins the price for best counter to that!!!! @Lisa C - this is unfortunately very common. Cardiologists rarely acknowledge dysautonomia - and POTS especially - as a real condition. My local cardiologist ( who is awesome and tries to educate himself about POTS, works well with my autonomic specialist and my PCP and now sees several POTS patients ) sees this a lot with his University peers. They refuse to even listen to the subject when it comes up in seminars or conventions - he says they just walk out. I think this is because they only want to treat the heart and the electro-physiology they know - having to take the ANS into consideration requires them to rethink their entire approach to healing. ( BTW - I think most of them think of it as fixing rather than healing, since healing would require them to treat the entire person, not only a body part 😒) I would see an autonomic specialist ( see our physicians list ), most of us have to travel in order to get proper medical care. I myself have to travel 7 hours to my autonomic specialist, but thankfully since I am an established patient my docs and I can reach them via messages rathet than having to show up in person every time ).

Could be - I recently traveled from my home in the Appalachian mountains ( 2700 feet elevation at my house ) to the ocean and as soon as I got out of the car I crashed. I assume this was due to the elevation change, so maybe that is what happened to you as well?

Well - I think that they probably don't know. I am like you in the way that I need to understand what is going on with me, or else I feel out of control ( literally! 😉) I researched my symptoms and dysautonomia in general for years until I understood the ins and outs. When I did not understand something I would ask my specialist or study the physiology and anatomy until a symptom made sense to me. This illness really taught me how to be in charge of my own healthcare, the importance of informing ourselves about our symptoms and being able to make informed decisions about our treatments. Since so many physicians are either uninformed or misinformed about POTS we HAVE to know about it, simply to protect ourselves from doctors in the wrong!!!!!

When my adrenaline rises it causes vasoconstriction, this causes symptoms that cause more adrenaline which causes more vasoconstriction … the IV fluids keep the vessels dilated and also maintain blood volume - both of these measures prevent the release of adrenaline in an excessive way.

Dear @statesof - are you actually driving yourself or are you a passenger? I do not drive b/c of POTS and seizures, so I am always just a passenger. I cannot tolerate long drives very well even as passenger and always crash for a day or so afterwards. I reckon that if you drive yourself the weird feeling in your brain could stem from having to concentrate on driving for so long. I can no longer focus on anything for very long without getting wore out. I am not sure if this is what you experience but it feels as if my BRAIN is actually tired and achy. Maybe - just guessing - the fact that you get it in Oklahoma could be a matter of TIME you spent on the road rather than the geographical location? Maybe it is your body telling you that this is as far as you should go - kind of like it does when we know we stood too long and have to lie down?

@Sam4877 - yes, I tested negative for pheo. And yes - I take all of these meds together - and then some!!! But I did not start them all together. I tried Clonidine, Mestinon, Metoprolol, Propanolol and Norvasc first but none of them worked well enough or I could not tolerate them. I started with the lowest dose of Carvelidol first ( 3.125 mg ) and then increased slowly to 25 mg. I still had problems with vasoconstriction and High bP so my specialist added the Diltiazem ( 30 mg twice a day to start with, increased slowly to now 240 mg XR version daily ). Since I still got high BP with flares we added guanfacine 0,5 mg ( half of the lowest dose ) and it helped. Once we started weekly IV fluids my BP stabilized to the point that I could decrease the Diltiazem to 180 gm and go off the Guanfacine altogether. Today my BP's run 110/60 to 90/50. I no longer have these drastic fluctuations and only run high when in a triggered flare, and that gets rectified - again - quickly with administration of IV fluids.

@Sam4877 - yes, this is typical for me. I have hyperadrenergic POTS and commonly my BP would have those numbers. When supine my BP is normal(ish) but as soon as I move, and especially when standing up, it used to jump up to 150's/90's with high HR, exactly as it does for you. The diastolic hypertension along with tachycardia and symptoms of fight-or-flight are text-book for HPOTS and are caused by the blood vessels suddenly and severely constricting due to norepinephrine dumping. What has stabilized these symptoms for me are the following medications: Carvelidol ( beta blocker ), Diltiazem ( calcium channel blocker ), Guanfacine ( BP med ) and Lexapro ( SSRI - balances neurotransmitter levels in the brain ). In addition to that the MOST effective treatment are regular IV fluids, they prevent vasoconstriction and normalize my BP. Today my readings are completely normal regardless of position or activity, unless I am in a flare.

@MTRJ75 - Before getting a port for fluids I had a prescription to get 1 L fluids over 4-6 hours weekly as needed. When I would get bad I would go to an infusion center and get them ( needed to be scheduled the day before ). Sometimes I needed them once a week for several weeks. My sister gets them weekly for the past year and her veins are getting bad. The surgeon that inserted my port said that anytime you need IV access for IV medication weekly or more often a port is justified, but that is always a matter of risk vs benefit. If you get IV fluids only in flares - and that is not every month or so - you should be fine. Many people get stuck for lab work every week and their veins are fine. So I don't think you need to worry about your veins getting bad if you get fluids even every couple of weeks. I know how much my POTS and my ability to live without the fear of passing out or taking seizures have improved since getting IV fluids weekly and whenever needed through my port. I am not advocating getting a port - just that IV fluids help me ( and many ) to quickly get over flares. So if you are in a bad POTS spell and have the ability to get fluids then I would do it as soon as possible. I not only improve quickly with them but actually feel better than before every time I get a bag.

@MTRJ75 - I am so sorry!!! This is absolutely typical for POTS! I have been so well that I honestly thought I was cured - just to get knocked back down to bedrest again within a matter of one day! It sounds to me that it probably was the fact that you could tell it was coming but had to clean the yard anyway. For me something like that is the straw that breaks the camels back. Yes - it IS frustrating, every time. And for me IV fluids are the only thing that helps me get over it really quick, so if you CAN get fluids I would get them. Otherwise just do the usual - rest and careful exercise and do not push through. It could simply be temperature changes and barometric pressure fluctuations as we are going into summer. Also the fact that in the warmer temps we need more fluid when being active and we often do not accommodate for that. Allergies do it to me, especially when doing outside chores ( histamine is a vasodilator ). Freezing arms and legs along with diarrhea are included in my flares as well and come from excess adrenaline. As I said - IV fluids fix that for me. But I can totally understand that you are concerned about having to go to a facility to receive them, risking COVID. I am sorry you are so unwell and I hope you can rest until it's blown over!!!!

??? What in the … 😝😶🤔😬🥴😲😩😖 …. !

With all of the depressing news I want to share a victory story: recently I spent a few days on the ocean. Due to POTS I had to stay inside in the air-condition and could only venture outside in the cooler am or after sunset. On the second day I had to get IV fluids and after that felt much better. So I mentioned to my family that I felt so good that I wished I could go out in the ocean, which was promptly countered by my teenage daughter with " Yeah right - you would never last, you're too frail". Well - wrong thing to say to a stubborn German. I had not even brought a bathing suit so I threw on a pair of shorts and my husbands T-shirt, said : "I'll show you frail" and down the beach I went. No one else was in the water since it was a cooler day and the waves were rough and cold. Down the dunes, over the beach and straight into the sea I went, the cold waves hitting me so hard it took my breath away. But I stayed at least one minute, went in up to my chest and back out. I felt so invigorated and victorious!!! I had expected a big time flare after that but strangely I felt better ever since ( not sure if that is due to the cold water or the " I'll show you" attitude. ) I came out so happy and satisfied as if I had just regained my vision. So, to anyone who thinks we are frail: we are stronger and braver than you ANY day of the week, even if we only last one minute on something you take for granted!!!!!!!!!!!!

@autonomicreg - Sushi is right, it is recommended to get properly measured so you have the right size. Usually thigh high is recommended for POTS - better yet waist high!!!! Measuring Guide for Sizing of Compression Stockings Measuring your legs for compression stockings, support socks, support hose, and gradient compression hosiery:. For knee-highs: measure around your ankle and calf. Then, measure the distance from the floor to the back of your knee. For thigh-high and pantyhose: measure around your ankle, calf, and upper thigh. Then, measure the distance from the floor to your upper thigh (bottom of your buttocks). ANKLE Measure around the ankle at the narrowest point, generally above the ankle bone. CALF Measure around the calf muscle at the widest part. LENGTH Measure from the floor to the bend behind the knee. THIGH Measure around the thigh approx. 3" below the gluteal fold (crease of buttocks). THIGH LENGTH Measure the distance from the bottom of your buttocks to the floor.

I would like to add that it is very important to check with your doctor or pharmacist before introducing any herbs or supplements IF YOU ARE ON MEDICATIONS FOR DYSAUTONOMIA. Many supplements are known to interact with certain medications - which is especially important to us, since we are often highly medication sensitive. I get some herbal supplemets from my chiropractor and she has the supplement company she works for research if the particular supplement can be taken with my medications and - more importantly - with dysautonomia in general. Some supplements I cannot take. And once a supplement is recommended by them I check with my pharmacist, who reviews all of my meds and lets me know if there are any potential interactions. For example I cannot take Hawthorne and Black Kohosh due to my diagnosis of HPOTS and interactions with my medicines.

@RobinB - that is great!!! If there was one close to me I would totally give it a try, I can see how this could relax the ANS and help with our symptoms - please let us know how you do with it!!!!