Pistol

@Derek1987 - although I am relatively good controlled on my meds I still am mostly housebound due to the fatigue you are describing. I would be flat in bed for a week if I did all that you packed into one day!!! Whenever I HAVE to go anywhere like doctor appointments I rest the day before and at least 2 days later. A week ago I went to the doc and was useless for the whole rest of the week. --- Many activities that are optional - like school activities, sports events or even church - have to take the back seat. If I go to church on Sundys I cannot cook or do anything else that day. ---- I agree - is there anyone who could help out with some of the errands? Do you live in a town where you could do online shopping? Some major grocery stores will take online orders and all you have to do is pick it up and pay - that is really a valuable invention!!! In my case my husband does all the shopping. If I need to go anywhere I go in my wheel chair, which helps tremendously. ---- https://www.sciencedirect.com/science/article/pii/S1566070217303284 This is an article about how to save up your energies , it is very interesting

Back in 2011 my cardiologist ordered a second TTT. He was unable to do the test so it was done by the EP at the same hospital. The test was clearly positive for POTS, however the EP said that NCS or POTS do not actually exist, that it is a made-up " fashion - illness ". I should stop taking my BB and BP - the only reason my BP was fluctuating was due to me taking it so often! When I told him that I was not allowed to drive due to my frequent syncopal episodes he rolled his eyes, told me to go ahead and drive. He actually said: " My daughter had the same thing - I have no problem with her driving ". He than went on to say that high BP cannot be felt, that it is called the silent killer b/c we are not able to feel our BP. I had a Follow-uop with my regular cardiologist 5 days later and stopped the BB as directed by the EP - just to show him what happens. I was barely able to walk into his office. He apologized for his colleague and started me back on BB- in addition to midodrine. Another good one is : the very first cardiologist I saw for my frequent faints and tachycardia told me that there is nothing anyone can do, he told me that I will continue to pass out for the rest of my life and ordered compression stockings. And - seriously - a doctor asked me once if I smoke pot … because of POTS. He thought it was related!!!!!! What in the … ?

@Aida A - I used to have this symptom, including the dissociation feeling, like walking under water … the dizziness ( almost like constantly falling through a trap door ) was actually the first POTS symptoms I reported to my PCP, months before I got it full blown. It is mostly controlled now with my meds for POTS but when it does return I take Meclizine ( Antivert ) and that helped.

Dear @lildia - if you are suffering from any infection - you mention sinuses - POTS will be worse. Nausea is a symptom of POTS - there are prescription meds like Zofran that help me. Regarding your question about substance abuse: do you feel that you are taking too much of any substance? Please bring up your concerns about skin patches to your doctor - they should be evaluated. This forum is not able - or allowed - to give medical advice, so bringing this up to your doctor is very important.

@SmileyGal - I am so sorry about all these episodes! I too have been through that - I had to stop working and now m fully disabled because of the frequent syncopal episodes - at work, at home, in the store, at church, in doctor's offices …. You mention that you are considering a pace maker - I used to hope for one as well but the sad truth is that this probably will not fix you. I had several halter monitors and an implanted one - good for 3 years - because my specialist was hoping to record a drop in HR or even a pause before the syncope so that I could have a pacer. Unfortunately that was no the case - all syncopal episodes showed tachycardia, so a pacer was not indicated. Only if they record a PAUSE before syncope would a pacer help. My cardiologists told me that if I had pacer I would still just pass out . Sorry to be the bearer of bad news. Have you ever had a TTT or halter? --- Regarding falls and safety: I too had falls so violent that I broke bones and got bad bruises. At first I did not recognize when I was developing a faint or seizure but now I am much more in tune with my body and have about 2-3 seconds before, enough to get on the floor or at least lean against a wall. In the shower I always sit on the floor since I even fell out of shower chairs. This way I have avoided many falls. When I am in a flare my husband sits by the tub when I bathe to keep me safe. I currently am in a flare since I have the flu and yesterday I had to crawl out of the bathroom and passed out in the hallway - but at least I was already down! --- I am glad you joined the forum since we all are in the same boat. It was very helpful for me in the beginning to have the support of this forum since it is so difficult to get others to understand. Keep up with informing yourself - and be positive!!!!

That is a good idea - my optometrist refers patients to an ophthalmologist if he finds something suspicious . This might save you from making your PCP do too much …. lol.

Mine feels like my heart is going to explode and radiates up my left neck accompanied by shortness-of-breath when my BP is high. When I get anginal pain it is left-sided and feels more squeezing, this pain is not dependent on BP.

@kkirsten - I have the exact same symptom!!! Although I do have a form of angina this feels different. I had it off and on for years, CXR and EKG is always normal. I went to a chiropractor and they felt it was a rib that came out of place and did an adjustment but hat did not bring relief. Since the shortness-of-breath remains and my PO2 runs low ( 94-95% ) I am scheduled to do a CT of the chest.

I think it is due to the sympathetic NS over reacting, those symptoms are part of the fight-or-flight response. You know how people get so scared they loose bowel and bladder control? That is the same mechanism. Sounds like an overabundance of adrenaline.

@Trying As far as I know POTS is diagnosed by an increase in HR WITHOUT a noticeable DROP in BP. If the HR goes up and the BP drops - that is a NORMAL response of the ANS as long as it goes back to normal within 1 minute. If the BP stays low it is most likely OH - which also is an autonomic dysfunction. --- I would ask your daughter if she would be willing to see a neurologist as others have mentioned. If I recall correctly she is in her 20's - hopefully she will have the energy to look into this specialty, it may help since other options have not seemed to be helpful.

@jayut - I also used to have severe nausea and GI problems with a flare. Zofran helped me for the nausea and snacking every 2 hours instead of meals also helped. Drinking was always a challenge since water made me more nauseous. I found Gingerale to help me with that. --- Have you had an EGD or seen a Gastroenterologist?

Being overly sensitive to medications is part of POTS - since the ANS is already not functioning the addition of meds can initially set off an undesirable reaction. In my case - and many other POTS sufferers - it is not unusual to have your doctor attempt to find the right treatment for you by trial-and-error. It was the ONLY possible way for me to find the right combination. Since there is no " one-size-fits-all" medication ( treatment is highly individual ) we have to be brave and give different meds a chance. In my case I have found that I did not find out how I responded to meds until I tried them for a while ( unless I had SERIOUS side effects right from the start ). I also have found that once a med worked I had to gradually increase the dosage over time. I do not know if you feel this way but I often expected a new med to be " THE ONE '- the one that cures me - just to find out that despite effective meds I still had to adjust my lifestyle in order to obtain ( or even maintain ) a certain amount of control over my symptoms and abilities. Today I am somewhat controlled on meds as well as balancing my daily routine with a careful regimen of rest and exercise. --- Please give your doc a chance - you are lucky if you have found one that is WILLING to try. Many docs will not do that b/c finding the right treatment is just as frustrating for your doc as it is for you.

Hello @bombsh3ll - my sister lives in germany and she gets her IV fluids at her PCP's office one day a week over 6 hours. For now she got n order for 4 weekly infusions. After that month is over they will watch her how she is doing ( in addition to the fluids she considerably adjusted her work schedule and takes frequent rest periods during her day ). She has already seen an enormous difference from fluids and the lifestyle adjustments!!!

Dear @jayut - welcome to this forum! I am sorry that you are having such difficulties. Those are a lot of triggers all at the same time!!! Regarding your meds: why did you stop the propanolol? It may very well be helpful to you. --- Your question about how to stop a crash: there is only one way that I can do it - hydration ( in my case IV fluids ), rest and exercise. In the first days I stay mostly in bed but do recumbent exercises and stand up every hour at least to prevent from worsening orthostatic intolerance. Once I start to feel better I slowly spend more time upright and do core and leg exercises followed by rest periods. Then I start to take a brief walk, just a few minutes but more every day. This regimen has helped me through many flares. It is always tempting to wait it out in bed but this makes everything worse, targeted exercises are key, to your tolerance and gradually increasing. How were you diagnosed? Did you have a TTT? Often this can point towards the type of POTS you have by monitoring your Bp ( drop or elevation when upright ). Also - have you been diagnosed with EDS? Have they checked your neurotransmitters? You may want to be evaluated by an autonomic specialist or an autonomic clinic. There is a list of physicians on this site that might list someone close to you but often people suffering from dysautonomia have to travel out-of-state for specialist care. It is not unusual to experience fluctuating BP as you describe - slow reconditioning - as I mentioned before - is key in establishing balance. I hope you will feel better soon. Be good to yourself and be patient.

@bombsh3ll - in my case hyperPOTS runs in the family and we have found great relief from IV fluids BUT - the trick is that they have to run no faster than 150 ml/hr or the fluid ends up outside of the blood vessels ( causing edema ) and the just gets peed out. Faster infusion will also cause high BP.

Yes - that is KEY information!!!! With dysautonomia any med will often be started at the lowest possible dose and then increased to a dosage that shows improvement. ( If the lowest dose is not effective does not mean the medication does not work - it just may need to be increased ). AND - once the improvement shows we need to get exercising, like dancer mentions. The medication can get us to where we can tolerate activity but WE have to be active!!!! I hope you daughter will find relief soon!

@Meemee - I agree with @dancer65. It is ESSENTIAL to balance activity with rest. I have found that certain activities ( like studying for exams or computer time ) drains mental energy, whereas physical activity can drain OR give you energy. I have found in my own life that a period of mental activity followed by a brief time of MINDLESS physical activity ( exercise if able, or light housework such as folding laundry ) and then 10 minutes of rest ( whatever you perceive it to be ) enable me to be productive. If I attempt to function like a "normal" person I fail miserably!!!

@Stark - I am not sure if this is what is causing your symptoms but in my case I get these chills when I am presyncopal, right before a faint. I was told that it is caused by excessive vasoconstriction. If it happens after you eat I wonder if this could be sympathetic over-compensation? When we eat all the blood goes to the digestive system and when the ANS malfunctions this could trigger the sympathetic system to cause excessive vasoconstriction . Chills are a symptom of this.

Dear @JimL - I wish you best of luck with your surgery!!!! Please keep us posted on your recovery!!!

@JimL - they recommend 1l over 1-2 hours weekly to start, but only for one month. Many people improve from that. In my case I need them to be infused much slower ( over 8 hours ) or my BP goes up and the fluids go into my tissue from where they just get peed out. The longer infusion time allows every drop to go into the vascular system without rasing the BP. But they shy away from long-term fluids due to risks associated with IV access. My sister currently started a month of fluids over 6 hours weekly and does so well it is a miracle to the doctors! We will see how she does once the month is over.

@RecipeForDisaster- have they tried any of the meds that RAISE BP?

@RecipeForDisaster - if you used to be hypertensive and now are hypotensive - is it your meds causing that? And if so - could they be adjusted? What brought on the change in your BP to swing from one extreme to the other?

@potsiebarbie - yes, I have an abnormal EKG - it shows inverted T-wave. This CAN be serious if it is a new finding but in my case it is always there, so it is no big deal. The abnormality you are mentioning - incomplete right bundle branch block - was that what the doctor told you or was it the interpretation from the EKG machine ( on the print out )? Often the print-out interpretation is incorrect. I already had EKG's that claimed I had an inferior MI ( heart attack ) but the actual wave-forms did not support that. So - if your cardiologist is not concerned I would not be either. And yes - if you have no serious abnormalities or complications a one year follow-up is pretty standard. I have a rare heart condition and see my cardiologist every 6 months. But my husband - who has a minor arrhythmia - sees him only once a year. Sounds standard practice to me. But if you are concerned you can always go for a second opinion.

Yes - I get it now, thank you. I was confused by the reference to the shingles shot. I hope you will improve with your symptoms.

@RecipeForDisaster I too rarely feel the need to drink, except for first thing in the morning ( I am up peeing all night ). When I used to drink 2-3 liters a day along with lots of salt I just peed it all out, it never did anything to my POTS symptoms. In addition the fluid would add to my stomach problems and make me feel very full all the time. IV fluids are definitely the way to go in my case as well. The results are IMMEDIATE and LASTING!!!! With drinking fluids my BP was till high - with IV fluids my BP is normal to low and I can manage ( and feel ) a lot better.