Pistol

yumm! I am going to totally do that !

@MikeO - this time of the year I like to make soups ( since everything from the garden comes in ). I throw veggie scraps, herbs, an onion and a chicken thigh into the instant-pot and 30 minutes later I have wonderful nutritious broth. I freeze that and use it throughout fall to make soups and stews. My favorite right now - with string beans in abundance in the garden - is this recipe: Green Bean and Buttermilk Soup (kitchenproject.com)

@Ashc - my frugal brother, a starving artist who lives very simple but is content doing it, once gave me good advice: the two things you want to splurge on are shoes and a mattress, but of both you only need one. Well, I think a cordless vacuum may just belong on that list as well ...

@CallieAndToby22 - we only get shelter animals, cats or dogs. When my last dog, a lab, died from old age my husband wanted to wait before getting a new dog. I couldn't wait any longer than 3 months and we got our current shepard mix, Pal. she turned out to be the best dog one could ever have, calm and sweet and smart. She now is getting old and we are waiting for her to get to the point of no return. When that comes my husband wants to wait again but not I - I have found that getting a new dog right away helps with the grief. Especially of you are left without ANY dog! So I will give him a few months to grief and then - off to check the local shelters! --- I hope your dog toby doesn't miss Callie too much?

@MikeO You always need to check with your doctor first, but in general with people suffering from neurogenic cardiogenic problems ( I have neuro-cardiogenic syncope as well as hyperadrenergic POTS ) increased salt intake along with increased fluids is recommended because this increases blood volume and BP. If you retain fluid you may have additional problems other than dysautonomia.

yep.-, that's what dysautonomia treatment boils down to for the general medical community, no matter what the specialty is. In their mind all POTS patients ( NCS, OH etc all the same ) need to do is drink water and eat salt, and maybe take a BB. If that does not work it's on the patient, or maybe in the patient's head. Nobody but an experienced and well informed autonomic specialist wants to look further. IMO this is b/c if they DID look into it they would have to acknowledge that everything they learned up until the 1990's was only half baked. And which doctor would want to admit THAT?

Hello @MikeO - I get this too, it is caused by sudden drop of BP. In Germany there is name for this: Hoersturz, but in english the only name for it is Tinnitus. It is a common and typical phenomenon that is part of presyncope: almost fainting, or about to faint. In some people it can actually lead to temporary hearing loss, and they treat this with IV fluids, to restore volume and BP. My sister and cousin get this frequently and go to their ENT for IV fluids whenever it does not improve on its own. I never had it more than just a second pr two before either fainting or lying down, so the circulation to the head improves and the symptoms goes away. I explain ot to my doctors that I can feel and hear all of the blood drain from my head ( which is actually what happens 😒).

@Nameymcnamerson thank you for posting your experience! I am glad this med has helped you so much, and I hope it will continue to give you relief. It is always such a rare but celebratory occasion when someone finds something that helps!!!!

@MikeO nope, you are not nuts. It happens with dysautonomia quite frequently. Sorry it happens to you.

I don't think that would apply to dysautonomia patients. Maybe there is such a thing in "normal" men ... ? I always get a feeling of heat and flushing right before I pass out, and I am past the actual female version of menopause ... even before menopause I felt these heat waves come on before loosing consciousness. I think it is a common precursor of syncope.

@MikeO @MTRJ75 - I was not allowed to drive for several years due to syncopal episodes while sitting and seizures. The state I live in does not require a physician to turn you into the DMV, so it was kind of honor-system. I have not passed out in almost a year, and no seizures for longer than that, so I no longer need to follow the restriction. However - I never really felt that it applied to me. Despite my stubborn refusal to acknowledge the seriousness of my illness in the beginning - I now am a Pro at avoiding episodes. Plus - when I was at my worst I wasn't able to drive anyway b/c I would never be able to conjure up enough brain waves to be able to concentrate on a road ...

@dancer65 Thanks for sharing - yes, I am one that really suffers from both vacuuming as well as mopping the floor. One room takes me a long time, with many needed breaks in between. I do it once a week and it is all I can do for 3 days. Mind you - that means people will probably not even EAT on mopping/vacuuming day! Mothers day is long over, and my birthday isn't until November, but will keep an eye on any sales ...

So sorry @CallieAndToby22! I know how much it hurts to loose your best friend!

@MikeO - hah, I know the "tying your shoe laces" maneuver! I have found myself in walmart sitting on the floor pretending to be extremely interested in the item s on the bottom shelf ... 🤫

@MikeO - what I personally have found that if you go beyond the initial "Whoosh" and not lie down it is already a lost cause. These days if it happens I just drop. Where ever I am, what ever I am doing ... I drop. It keeps me from getting hurt and from making a scene. ( Although I am in a place where it barely ever happens anymore. ) I am sorry you have to go through this.

Hey @MikeO - yep, I know everything you are describing! I too have found myself too many times to mention on the floor passed out, bruised up and even concussed. Thankfully I never did break anything - which is surprising! Many of my episodes - seizures and syncope - have been caught on ILR, one even on EEG while I was hospitalized for 5 days at an epilepsy monitoring unit! It is always the same : tachycardia and DROP in BP when fainting and tachycardia and RISE in BP during seizures. I also know the feeling of having supine hypertension - it is very scary! I hope that you have good docs and that they will find a treatment for you soon! Hang in there - I am proof that things can get better!

Yes, you can. Early on in my POTS journey my autonomic specialist tested my entire RAAS. Mine was fine. To tell you the truth I am not sure what type of doctor orders this test, maybe a PCP can order it. Thank you for posting this very informative article. It explains to a degree one of the mechanisms why auto inflammation is often involved in POTS. I am one of those people that are affected by auto-inflammation and have found relief of both inflammation as well as POTS from hydroxychloroquine. I am sorry! That is horrible! I used to be like that too and it took many, many years of relentlessly trying meds until I found some relief. Today I am able to know exactly when I need to stop doing what and to avoid certain activities or triggers all together. I sincerely wish you find some relief!

@MikeO - I have HPOTS and suffer from sympathetic overcompensation. What happens in my case is that when I stand up ( or get otherwise overly stimulated ) my BP drops due to pooling. In response the SNS kicks in - but does so in exaggeration, meaning the adrenaline levels go through the roof. That causes chaos: high BP. high HR, sweating AND chills/tremors, yawning, paleness and blue lips/toes/fingers, inability to think/talk/hear/see ... in my particular case it gets so bad that I either pass out or take seizures from so much vasoconstriction that there is nothing going to the brain. I am on high doses of calcium channel blockers ( often contra-indicated for POTS patients ) and beta blockers, in addition to many other POTS meds. But even with all thee meds the one and only treatment that significantly improved my condition are regularly scheduled IV fluids. They seem to stop the ANS from wanting to vaso-constrict, and they have been effective in preventing the worst of my symptoms.

Yes - drinking only water is useless. You need to combine the water with salt in order to keep it within your circulatory system. But even that does not help in some cases. I do not respond to taking in vast amounts of water and salt by mouth, even when combined with other electrolytes ( @cmep37 - your docs in the UK are simply completely wrong by suggesting that drinking is equal to IV fluids! I gladly will send them my medical record to prove it! ) The reason for that is that adrenaline triggers urination ( part of the fight-and-flight response ) and in cases that adrenaline soars due to ANS malfunction there is no amount of oral hydration that will stop that. IV fluids however provide an immediate boost to the electrolyte/fluid/pressure balance in the circulation and - in many, many cases of POTS - normalize HR and BP to the degree that oral fluid replenishing is not able to. In my case I will pee out every single drop I drink - but as soon as I get IV fluids this all stops. I no longer pee everything out ( on the contrary - years and years of IV fluids during flares have shown that my urinary output DECREASES with IV fluids, and BP and HR improve almost immediately ). He is probably right: it may be an american thing but that is because we actually did STUDIES here. Not to be rude - but if there is something that works in another country - why not do your own studies? In the US the use of IV fluids for treatment of POTS is still highly controversial, b/c of the risks associated with ports and IV access in general. But it is also a fact that many people suffering from medication-refractory POTS have no other option. I myself have gained tremendous control and was able to get back a lot of independence because of weekly IV fluids for the past 3 years. No complications - just simple blissful ability to remain conscious, upright and have a bit of energy every day. Oh - and my HR and BP have been within normal limits since starting weekly IV fluids - no longer the 160/110 to 60/40 readings I had before!

Sorry @MTRJ75 - the same thing happens to me, and despite the fact that I am much improved since initial onset of my illness: the only way I can avoid having a flare from the sun is by AVOIDING the sun. I do not mean to take the wind out of your sails but honestly - if it makes you feel bad you have to avoid it. I know it isn't fair and it stinks - but the only way you can possibly get in control of these symptoms is by avoiding what makes you feel bad. At least until they come up with a cure.

Great! This may be very helpful. I know IV fluids have saved my life! I tolerate Zofran well, I take the ODT form. I have gotten it IV as well and it seems to hep instantly.

I am so sorry - how can that be, since it is a known treatment for POTS flares refractory to meds and oral fluids? It happened to me as well, but that was years ago. Here in the US they mostly know bout POTS flares and IV fluids by now. Yes - I know what that is like - to be too sick to speak but having to explain to the docs what you need, and then have to fight for it! I am sorry @cmep37!

@cmep37 - I am very surprised that in your condition no one has ordered IV fluids? With your BP and HR you are a definite candidate for it. Even without POTS - daily vomiting and excessive sweating cause dehydration, dehydration causes all of the symptoms you mention ( even in "normal" people ). The treatment for dehydration is IV fluids - if your doc does not know that you may want to go to an ER? I guarantee you that you will feel much, much better after an IV. I used to be in ER or hospital in a state like yours every 6-8 weeks and IV fluids would turn me around every time.

@CallieAndToby22 - the fact that you don't tolerate fast food and greasy chips may mean that you have a problem digesting certain fats. My husband has this - when he eats fast food or chips he feels very unwell and the next morning he looks like he is 9 months pregnant. When he started to cut out any fats used in deep frying he got better.

@MikeO - that is a perfect log! If I was a teacher I would give you an A!!!!