Pistol

I do not tolerate a lot of food at once so when I get hungry I like to "fill" up with things like yoghurt or an egg - they make me feel like I just got off the thanksgiving table but without all the negative side effects!

Thank you @Chiara for responding! 🥰

Oh, come on @MikeO! It can't be that bad! I LOVE plants. I have an Orchid I got about 7 years back from my husband for valentines day and it now has 48 blooms on it! And it blooms continously - as the old ones die off new ones are forming. I also love herbs, have several flower gardens, a vegetable garden, an Aloe plant, a Fig tree and a Rosemary bush that made it to 14 years old ( rest in peace, she died this spring 😢). And tons of house plants. I even grew an apple tree from seed! Plants are just like animals and humans - they want to be given what they need and then they will give you all they got!

@brainchild - I am not sure of this applies to you but my sister has autonomic neuropathy ( essentially HPOTS without tachycardia ) and they did a special eye exam on her. One of her eyes is cross-eyed, but only slightly. All of her life this caused her brain to be overly stressed trying to make sense of the different images. This was said to potentially contribute to the high adrenaline levels and the brain fog. She now is wearing special glasses and ( not sure if it is new meds, becoming disabled or the glasses - or a combination of all three factors ) has found some improvement of her symptoms and high BP, as well as her stress levels. There is a name for this condition but I cannot remember it. It is close to homophobia ( but of course not THAT, lol ).

@MikeO - I used to go to certain Urgent Care centers for an infusion, with a prescription from my PCP.

@CallieAndToby22 - These are all good but i find the one of the house with the fire extinguisher and the painted door exceptional! Very artistic capture!

@MTRJ75 this may be a good idea for you as well! i know that my vet will board our dog if it comes down to an emergency, and having to go to this appointment in order for you to continue this important med IS an emergency. If I was in your shoes I would go to the appointment and have someone available to take the dog to a kennel if needed. Most likely that would not be needed but just in case, so you would not have to worry quite as much. If you need this med then it is very important for you to go.

@MTRJ75 - GO! I have been too sick to travel often, but always went to my specialists appointment ( 8 hours away ). This has resulted in me fainting at doctors offices a few times - but actually, this was a good thing each time. If they see you at your worst they can actually get what happens - if all we do is tell them what it is like they cannot get the whole picture. For me - I went, no matter what. If you are too sick to get back - you are in a hospital with a specialist, aren't you? Don't be scared - go! That has been what helped me get treatment in many cases. I would like to add that in my case I sometimes went to ER to get an infusion prior to the appointment - vomiting, diarrhea and feeling unwell certainly warrants an ER visit!

Thank you, @Jyoti - you have just opened my eyes! This is EXACTLY what happens to me! Thanks so much for explaining it!

Despite getting HR and bp somewhat under control I continued to struggle with fatigue and low energy, coming in bursts. Also my joints kept hurting. Eventually ( after seeing a rheumatologist twice ) my autonomic specialist, who is involved in researching auto-inflammatory origins of certain POTS types, recommended Hydroxychloroquine ( Plaquenil ). Since starting it at the beginning of this year my pains and ( most importantly ) the fatigue and low energy have significantly improved! I even have been able to decrease several of my HR and BP meds since starting it! Being able to be more active b/c the fatigue and pain are gone seems to help with the POTS. IMO this is a clear sign that in my case ( I have HPOTS and NCS ) the auto-inflammatory theory applies!

@Haidar Badran - what did your poor man's test show? Did your HR go up more than 30 beats per minute and stay there?

Hello @Haidar Badran - it is possible that you experience vasodilation ( blood vessels too wide to keep good enough Blood Pressure ) from your immune response to COVID. Your body might be producing histamines, or other immune system agents, that will cause your blood vessels to widen. What CAN help with this is antihistamines, drinking lots of fluids along with increasing salt, wearing compression hose ( to help your vessels in your legs to stay tight ), exercising, avoiding heat, and maybe a beta blocker to help if your heart rate is too fast. Have you had a Tilt Table Test to see if your heart rate goes up when standing? There are many people, especially young people, that develop these types of dysautonomia symptoms following a viral infection, and I personally know many of them that recovered fully. However - some of them were sick enough to have to drop out of school or college for a while until the recovered. There are many different causes for Dysautonomia, and only a few affect us life long. Be positive, see a doctor that knows about post-viral POTS ( also called post-viral malaise ) and try to stay well hydrated, including doing all of the above mentioned selfhelp steps. Let us know how you are doing!

@Castorp - yes, malaise, fatigue, exhaustion ... all part of POTS/dysautonomia. I used to ( similar to @cmep37 ) be so exhausted that I could barely get out of bed. Over the years getting my BP/ HR under control ( and stopping to faint or take seizures ) as well as starting a SSRI and Ritalin have helped enormously. I also have been able to be more active and therefore improve my POTS symptoms once the right medication combo was found. SSRI/SNRI can be a very helpful med in POTS, since it helps to adjust the neurotransmitters ( especially serotonin ) that control a part of the ANS. In addition ot meds what helped me is increasing salt and fluid intake and a very slowly increased regimen of adequate rest and exercise. Althoug I have to say that exercise was not possible for me to do while being so extremely fatigued!

I will pm you

@MikeO - clonidine is hit-and-miss. It can cause supine hypertension but also is used to PREVENT hypertension. It is a VERY powerful little pill, and it can either help or turn you upside down. For me personally it caused Havoc with my system and I had to stop it after just a few days because of the severity of side effects. But I know of several people with dysautonomia whom it helped. It is one of those things that - if your doc prescribes it for you - you need to try to determine whether not it is right for you. I also know that it helps some people that take it on an as-needed basis.

@MikeO I was monitored several times with a BP 160/100ish along with a HR of above 150 - this was during and after several episodes of either passing out or having seizures. Neither is particularly concerning by themselves but if they occur TOGETHER you can imagine the pressure present in the vessels! Other times I would get these high readings but they would be followed by a sudden DROP in BP and HR - resulting also in loss of consciousness. As you see - there are many, many ways for the ANS to go haywire! --- I hope your appointments this week will be fruitful and productive! Hang in there!

@MikeO - the fact that your BP goes up and then drops is probably due to dysautonomia. Plus dring cardio you were probably exercising and when being wheeled to ER you were resting - that theoretically also could affect the BP. I have HPOTS and during several stress tests my BP would go really high to where they had to stop the treadmill because I was close to having a seizure and as soon as I sat down it came back down. The scary thing is that the increase in BP occurs at the same time as an increase in HR, which then makes the pressure that much more dangerous! The thing that concerns me is the weight gain - that does not really happen with dysautonomia alone, it may mean there is something else going on that could be complicated by your dysautonomia. The benefit from being in ER while this happens is that they can do testing WHIE you are symptomatic. I would definitely request to have orthostatic BPs taken next time you are in this bad shape - lying down we often have lower readings than being upright.

@MikeO - as a former nurse my personal opinion is to not try to avoid the ER when you are that ill. There maybe more to check than simple blood work. Sudden weight gain with an increase in BP that much would totally qualify you for a justified ER visit. Yes, we often can avoid ER visits by doing things at home, but what you are describing certainly warrants immediate examination by a physician! If it happens again I would go, that is just my personal opinion.

@MikeO - I would be concerned if that happened to me, Gaining 5 lbs in one day is NOT normal. Thankfully your cardiologist has ruled out any heart failure, but there is still a cause for it. Have they checked your kidneys? Your liver? Both of these organs can cause fluid retention if there is something wrong with them.

@Teodor - dysautonomia is not an electrical issue and not a mechanical issue of the heart, so in most cases ( as it is in mine also ) EKG and Echo will be normal. To determine causes of tachycardia ( if POTS is suspected ) they have to do a TTT or upright EKG, since symptoms occur when standing ( hence it is called postural orthostatic tachycardia ). Any autonomic specialist ( or any physician with a basic understanding on how a malfunction of the ANS works ) will know that.

@MikeO - when are you opening your restaurant?

@MikeO - I have to protect my garden and fruit tress from these rascals! We live in the woods and the deer literally grow up in my back yard, 2 years ago we found a tiny fawn lying against our foundation! We left it alone but now it thinks our land is free game, and it ( and its family ) ate my beans and tomatoes 2 years in a row! This year we improved our fencing around the vegetable garden and pretty much built a fort around our apple trees, but they still managed to emaciate my azalea bush in the spring!

@JennKMac - ANY viral infection can be a trigger for POTS. Many of us have POTS and do not know it until it becomes triggered by infection, pregnancy or other stressors. Fortunately in many ( not all ) cases of post-viral POTS it can become manageable over time. I know of several people that developed it after Lyme's disease, Mono, even a severe case of Flu - and they all have either recovered after a few years or they have been able to manage their symptoms to where it only reoccurs at times. @cmep37 is right: in HPOTS - which I have - there is usually a marked increase in BP along with the tachycardia upon standing. This is generally an increase in DIASTOLIC pressure ( the lower number ). And I also agree with Fludrocortisone and Midodrine as a potential treatment for POTS that is NOT accompanied by an increase in BP. Orthostatic tachycardia from POTS can often be controlled with increase in salt and fluid intake as well as wearing compression hose. Have you tried all of these measures? Also ample rest as well as aerobic exercise can help with the symptoms - just make sure you exercise TO TOLERANCE, meaning that at first you may not be able to do a lot of exercise and need to increase gradually and very slowly.

@Sam4877 - there are several possible causes for what you describe, and only a heart monitor can truly identify what is going on. I have HPOTS and NCS, and for me the HR increases rapidly when standing up ( the POTS part ) and then can plummet so suddenly that I pass out ( the NCS, or neuro-cardiogenic-Syncope part ). Another thing that happens to me - and causes chest pain when it happens - is that sometimes I experience premature beats ( called PVC's ) that will cause skipped beats that resume in fast and hard beats after a pause. If there are more than one skipped beat in a row ( I sometimes have 4 or 5 in row ) then this can cause what appears a slow heart beat and it can cause chest pain. As I said - to make sure you should notify your doctor and have a monitor, TTT or even standing EKG performed.

She had it through an allergist. Interestingly, she had to have her thyroid removed, both surgically and then radio-active. She is also on Thyroid hormones. I wonder if that maybe correlates?