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I have found that eating an iron rich diet and eating foods rich in ferritin took care of the deficiencies. However, fatigue still occurs with flares. On any given day, even the best of days, I can only be functional for a few hours, and those not even in one sitting. My vitamin, mineral, iron and ferritin levels are normal. So, for me it is eating well, living within my limits( which are dictated by dysautonomia ), getting twice weekly infusions, taking my meds religiously and exercising to tolerance. I have been able to decrease the Protonix to daily and by changing my dietary regimen and eating 6 small meals a day rather that 3 large ones I have been able to improve.

@Jyoti well said, not much to add! @RubywPOTS I have a handicapped tag, and I dont even drive! I have it for the days that I need to be driven somewhere and cannot walk too far. If I feel well and can walk then I dont even park in a handycapped spot. So use it when you need it and dont when you are well!

@bizbiz I have noticed that quite a lot of dysautonomia sufferers are overly sensitive to one or several senses! HPOTS runs in my family and my sisters are very sensitive to smells, light and noise. I am very aware of any noise going on around me, and places like stores or crowded places can overstimulate me in no time, to where I get the racing heart and BP spikes. It may just be something that contributes to the triggers that make us sick.

@Diannna before i was diagnosed with HPOTS I was diagnosed with neuro-cardiogenic syncope ( NCS ) from my first TTT. I became sweaty and lihghtheaded and felt faint, then actually fainted. The monitor showed a sudden and rapid increase in HR followed by a sudden drop, from 150 to 50. Thats when I passed out. Sweating and nausea are usually a part of my pre-faint symptoms. You may want to see a cardiologist and get a TTT ( Tilt table test ).

Well said, Mike! @LadyBug45 I used to pass out all the time, everywhere. I avoided going out in public for a while, once I became disabled. But with time, exercise and many medication trials I became more stable and also braver. Today I can take short walks, and with my seated walker I can go to stores and doctors offices. Now I no longer become panicked, since I haven't passed out in a long time. If people ask why I sit down in the middle of an aisle I just say that I have a bad heart and need to catch my breath. It's much easier than trying to explain the autonomic nervous system ......

@Diannna so sorry you are experiencing this! Have you ever measured your HR and BP during these sweating episodes? For me this happens when my BP drops. When my BP goes up I have chills and tremors. Nausea usually occurs with the drops, and headaches when the BP goes up. Yes, I too go from sweating to cold when in bed, and it is NOT from menopause ( long past that ).

@MikeO I take Diltiazem, and in the fall the pills were from a different supplier. Thay didnt work so my doc told me to go up in dosage. Going from 180 to 240 worked. Then, last month, the supplier changed to the old one and the 240 was too much, so i have to go back down. I really dont get it!

@Kaceysmom Welcome to this forum! I hope you will find answers to some of your questions here, there are many people here that are affected by dysautonomia and can share their knowledge and stories. Have you checked our physicians list under the physician tab on the top of the main page? It lists providers that specialize in autonomic disorders, there might be someone near you?

@Jyoti @Sarah Tee To come back to the original question of this thread: Dr Grubb is exactly that kind of physician. He will not only listen to you but he will SEE you, in your entirety. Not just the illness or symptoms but the whole person. And that is why he understands dysautonomia so well, because it is not an illness confined to ONE system but rather the symptoms affect ALL of us, body, mind and spirit. I am lucky to also have found a PCP and a cardiologist that have the same qualities when it comes to treating their patients. I had to kiss a lot of ( slimy ) frogs to pick my princes! Keep looking, they are out there!

@Sarah Tee It wouldn't make a difference. I have a background in the medical field and have researched dysautonomia extensively, as well as having been educated by my specialist about many details of my personal case. If I have to see a new doctor they dont understand why I am on certain meds or why I have to get IV fluids ( "You can drink, can't you?" ) and I mention I have HPOTS they just look at me with a blank stare. Then they continue to order certain meds that are contraindicated for me, and when I try to explain to them why I cannot take that they think I am hypochondriac, mentally unstable or attention seeking. So I only go to providers that are in the same system as my PCP, so they can look into my medical record. If that is not possible I ask doctors to call my local cardiologist, who has educated himself about dysautonomia and knows my case very well.

@Cblooms Welcome to this forum! I am sorry your granddaughter is going through this. It is very possible that she has dysautonomia of some kind, even if she does not have tachycardia. But in order to determine oif she has POTS she should be seen by a cardiologist who can order tests that will monitor her HR when she stands up. With Ehlers Danlos often the blood vessels are too elastic and therefore don't constrict as they should. This then leads to the heart having to beat faster and/or harder to pump the blood to all of the organs. This extra effort, and the fact that sometimes the blood does not get to the brain fast enough, can cause the fatigue. Sitting with the legs pulled up, or crossing the legs all of the time when seated, is often a compensation mechanism that people do even in childhood because the body has such a hard time pumping the blood from the feet to the heart. So crossing the legs will stop the blood from going to the feet and therefore more stays in the upper body. I have done this also my whole life! Until she can see a cardiologist or autonomic specialist that can determine if she has dysautonomia I would encourage her to DEFINITELY wear compression hose, waist high if tolerated. But it should be measured by a professional medical supply store because it is essential she gets the right fit. It is also important that she increases water and salt intake. This will give her blood more volume and that helps the vessels to pump it because if there is more volume then the elastic vessels will be tighter and can have more pressure to pump. Exercise is also very important. If she can tolerate it any exercises that strengthen leg muscles and abs can help the body use the muscles to pump blood up to the heart, organs and head. riding a bike can be good, swimming is good, and a rowing machine is what I use. Some people are able to walk or even jog, if she can tolerate that it would be good. I would ask her PCP to have her referred to a cardiologist at a major medical center near you to be evaluated for POTS, which commonly includes a Tilt Table Test.

@Garden Gal @Sarah Tee Regarding vascualr permeability affected by high inflammation markers: In September I was hospitalized with COVID with high inflammation markers and was placed on oral steroids. When I stopped the steroids I developed extreme swelling and pain in my ankles that was determined to be responsive arthritis. Then I developed sepsis and my inflammation markers shot up through the roof. The swelling in the legs went down after the sepsis was fixed with antibiotics but then I developed a rare autoimmune vasculitis in my legs that looked like fire ants had eaten my legs. I was under the care of a rheumatologist who eventually was able to treat the infections and then the inflammation slowly dissappeared. So - yes, inflammation definitely has an effect on vascualr permeability!

@MikeO to me it sounds like they really cant do anything RIGHT NOW and they want to let you know they got your message and they want to remind you to avoid falls at all consts by lying down as soon as you feel symptoms. That way they sort of have done what they need to when they dont know what else to do. At least that would be my interpretation. I have gotten vague messages like that as well. In my early years of dysautonomia I frantically saw many cardiologists. One of the first I saw frankly told me" You are going to keep passing out. You need to learn to avoid falls because your condition cannot be fixed." Just like that. I fired him and I eventually found my specialist and today I no longer pass out or take seizures. So. just because some docs give up does not mean we have to also! ( But he is right - lie down when you feel faint, no matter where you are! )

@Jyoti i was a patient of Dr grubb for years and he helped to diagnose and treat me. If you can see him in April i would not hesitate. I too have to drive 8 hours to see him and did it gladly for years because he was the only one that understood what was going on with me and he patiently tried as many meds as it took to find the right ones. You dont have to stop seeing your neurologist - Dr Grubb is an electro physiologist that specializes in autonomic disorders and will send any findings or treatment suggestions to your neurologist. He is really outstanding in his field!

@JennKay I get those waves of nausea whenever I am in a flare, and sometimes even on a good day. I was told they are a symptom of dysautonomia. I use gingerale to help, and zofran when they are extremely bad.

@Grammylm I am glad to hear that they are admitting you for testing and treatment. Wishing you the best!

@Grammylm I saw many, many cardiologists and had tons of testing over the first 2 years ( I had high HR, high BP and passed out a lot ) and finally was diagnosed by an autonomic specialist. He diagnosed me based on symptoms, TTT results and blood test for adrenaline, which was elevated upon being upright ( that is an important indicator for HPOTS ). Getting a diagnosis was a Relief, but in no way the end of being ill. My specialist is one of the leading autonomic experts in the world and even he had to try many meds, despite being able to find out the type of dysautonomia I have. It took years of trying, stopping and changing meds before we found the right med combo. In my case the meds were not enough and I get IV fluids every 2-3 days at home. That is the only treatment that has worked for me and my quality of life has immensely improved. You mentioned being bedridden. I was too, and the more I was confined to the bed ( because I would pass out when I stood up ) the worse my symptoms got. Once I was well enough to try to get more active I started very slowly with conditioning exercises. First only exercises to strengthen leg muscles and abs, then sitting and then standing. It took many weeks but eventually I was able to walk without my HR going crazy. Since you have been on the same meds for years and - as you mentioned - your body has changed ( which unfortunately happens to all of us ☹️ ) it is OK to follow your doctor's advice to try new medications. Only if we are brave and make a change can our symptoms also change!

You already know this, but would that not be because of the increased adrenaline levels from all of the stimulation? They misinterpreted my TTTs until I actually had an episode while being monitored with both EEG as well as EKG. It showed that I had a complete and sudden seize in cerebral circulation ... well, we dont always get to be so lucky to have an event like that being recorded. For most of us they have to go by symptoms - but they don't always believe us ...

@Horizons1 We are here, and we hear you!

@ShupeJL10 I dont know how to answer your question but I definitely would refer to your prescribing physician about this.

@Grammylm SSRI's and SNRI's are often prescribed for POTS. I personally have been on Escitalopram for hyperadrenergic POTS for many years and tolerate it well, others do not. As with all medications for dysautonomia - we have to try them before we see if they help, or if we even tolerate them. If your cardiologist wants to try it and is aware of your HR and BP changes I would think it should be safe to try. You can always also check with your pharmacist about potential interactions or cautions before you try it.

@Horizons1 I am sorry you are going through this! To me the symptoms you describe do sound similar to dysautonomia. To be diagnosed the doctors dont have to be specialists but they need to know how to test for it. Tilt tests are commonly ordered but often are false or misinterpreted. And your HR does not have to be crazy high - the current diagnosing standard for POTS is 30 BPM increase in 10 minutes OR a HR above 120. Having said that - there are many people that have all of the symptoms of POTS but NOT the high HR, they often have a diagnosis of autonomic dysfunction since they dont meet the criteria for POTS. My first TTT showed NCS ( neurocardiogenic syncope ) since I passed out during it, and my second TTT was interpreted as normal, although my autonomic specialist ( whom I saw a year alter ) said it clearly showed POTS. I was diagnosed by him due to my symptoms, HR and BP readings and a blood test confirming elevated adrenaline levels upon standing. It is also common for a viral illness to trigger dysautonomia - have you read the articles and studies about POTS and COVID on our main page? Longhauler syndrome ( which is similar to POTS ) can also cause the symptoms you describe. In most cases the recommended treatment for POTS can help with symptoms you describe: increase in water intake, increase in salt intake ( but check with your cardiologist first if you have high BP ), compression hose ( waist-high is recommended but often not tolerated, especially in hot climates ) and compression garments should be professionally fitted by a medical supply store. You can also find charts online asking you to measure your calf etc to find the right size. Exercise ( preferrably in fresh air ) can help but be careful if you are exercise intolerant. Too much or too vigorous exercise may worsen symptoms. On the other hand frequent rest periods are helpful for many - not only after activity but also regularly scheduled rest periods can prevent symptoms. Since you mention symptoms after eating - I have found avoiding large meals and carbs but eating 6 snacks a day helps me a lot. Beta blockers are a first medication that doctors tend to prescribe if the above mentioned treatments are not enough, but every person may respond to a different one. Here are a few articles that may be of interest to you

@Sea otter I do not have this particular stool, but I carry a lightweight, foldable camp stool in a carrying case with me when I think I might have to stand in line. But mostly for those occasions I have a seated walker that I can sit on and also roll around on as I am in line. That way I can move forward when needed without having to get up and move the stool.

@MikeO I am so glad to hear this, and I know that any improvement you found is mostly due to your diligence in trying to get better. I am proud of you!

Heart failure means the heart is no longer able to pump strong enough. The heart is a muscle, so it just is no longer strong enough to pump. A blockage means some of the heart (muscle) is not receiving enough blood because a vessel is blocked. Low volume means there isnt enough fluid for the heart to pump