Pistol

Hello @MeAgain... yes, I am intimately familiar with FMLA. When you request this ( whether for you or your husband ) you can take 12 weeks time off for this leave based on a rolling calendar. So, if you take time off for anything not regularly approved by your employer ( like vacation or sick leave as per your policies ) it will go towards the 12 weeks maximum. For me it worked like this: if the first day of FMLA is on february 10th then I dont gain that day back until the next year February tenth. So, in any given year you have 12 weeks of FMLA from the first requested day until the following years same day. Any time you start using time off either for a reason other than your own health or more time than allowed ( by your employers policy )for your own health they can use FMLA as an excuse for your absence. But you only have 12 weeks of this within the calendar year.

@Bailee who is the appointment with - a new provider? Either way I think tell them exactly what you have written here, that pretty much sums things up. I am aware that many doctors pin all symptoms we have on deconditioning, mostly because many of us ARE quite inactive, even on a better day. I remember that you exercise every day on a treadmill? That and the fact that you do the leg exercises should be enough to avoid true deconditioning. I would explain that you experience orthostatic intolerance and fatigue/ low energy that are affecting your quality of life, despite the exercise and treatments you are doing. I would also point out that Metoprolol was not working for you, maybe a different beta blocker would be better for you. Many of us had to try several BB before we found the right one, And remember to make sure to try the lowest dose and increase slowly to tolerance, that is very important in dysautonomia. I know several dysautonomia patients that mostly suffer from fatigue and brain fog - their doctors prescribed Modafinil and it is known to help patients. Here are two articles that mention this: Modafinil and Cognitive Function in POTS - Full Text View - ClinicalTrials.gov Postural Tachycardia Syndrome (POTS) | Circulation (ahajournals.org) I also was prescribed Modafinil by my autonomic specialist but it was not covered by my insurance, so I take Ritalin instead, and it helps me quite a lot with energy. You could always ask your provider about their thoughts about this medication. Hopefully the appointment will be fruitful! Make a list of questions, starting with the most important ones. Good Luck!

@MikeO good advice, thanks you!

I take generic Diltiazem ER for hyperadrenergic POTS for many years and the pharmacy I use deals with two different suppliers. A week ago I completely ran out of it on a weekend and needed to use a different pharmacy, who filled the prescription from a different supplier. The caps are a different color and size than the ones I usually take but the same strength. I have been taking the new ones for a week and it feels as if I am not taking any at all, which has caused me to flare. Bp is up, HR is fast. I have PVC's ( which have been pretty much absent for years ) and my feet are ice cold ( caused by the excessive vasoconstriction ). I also have a lot of chest pain. All of these symptoms are normally controlled by the Diltiazem. Does anyone else ever experience a difference in medications from different suppliers? I am wondering if I should from now on only request the suppliers that I know have helped me?

@bizbiz have you ever tried to exercise later? You mention that you do the treadmill first thing in the morning - maybe that contributes to the slowness?

@Bailee have you ever seen a chiropractor? I get problems with muscle spasms in my upper back and am on muscle relaxers as needed for this, but the chiropractor has often adjusted or "cracked" my back into alignment and that usually takes care of it for a while. However - you would need to be assessed by the chiropractor first to see if you are a candidate for this treatment.

@sandra.p29 yes, I am familiar with this sensation! For me that happens because when I first get out of bed the BP drops ( or stays too low ). Not enough blood reacjing the brain causes the slurred speech and not enough blood in the legs causes the weakness. I also often loose my balance when that happens, like I get dragged by a magnet to one side which causes me to run into walls. I was told that is all from circulation issues. What helps me with that is pulling my legs to my chest and rocking back and forth a few times, as well as "riding the bike" in bed before getting up, it pumps blood and elevates the BP. Then I sit at the side of the bed for a few seconds and move my feet from tip toes to heels a few times, that pumps blood up. Also drinking a big glass of water before getting up helps some people.

Well, that is really fast! Usually - in my experience - IV fluids for POTS should be infused AT LEAST at 1 liter over 4 hours. Anything faster goes right through. I have received boluses ( very fast ) in ER and had minimal effect. When infused slowly I perk right up and the results last several days, if not longer ( for me they reset the ANS ). I now received infusions over a half a day twice a week and am better controlled then ever!

@rtoth256 most people respond poorly to iron infusions in the beginning. The most noticeable benefit from them usually is an increase in energy, but often the benefits are not noticeable for a while. There are posts about other members here that had iron infusions and reported their responses, you may want to search our archives?

@rtoth256in the fall of 2021 I was hospitalized with respiratory failure from COVID pneumonia. While in the hospital they started me on steroids and after a week I was discharged. A week later I developed a high fever, swollen and painful ankles. Went to the rheumatologist and all my inflammatory markers were extremely elevated. Then I developed red pinpoint dots all over my legs. Turned out I also had developed sepsis and the extreme stress on my immune system had cause reactive arthritis and immuneresponse vasculitis. After another week of hopitalization and two weeks of home IV antibiotics I was as good as new. During this time I was placed on steroids a few times and the symptoms improved while on it but only masked the inflammatory response. I am mentioning this because even the rheumatologist could not understand why my markers kept going up while I was on the steroids until they found the sepsis. So, theoretically ANY underlying infection can cause a severe reaction like your wife's - but infections are not necessarily easy to pinpoint. They consulted an infectious specialist in my case. I hope they will get to the bottom of this. In my case I went to my good old "only POTS" self, so keep up hope!

@Ginger_ fantastic news! Thanks for the Update, I am really happy you are finding exercise improves your symptoms! Many of us get to the point where we find exercise intolerable and therefore avoid it, but it really helps to push through, however slowly we can. Yes, my PT also started me out lying and sitting and then it didnt take long to be able to do upright exercises. Remember all the exercises, even write them down or ask the PT to give you a print out, so you can continue the regimen even after the PT has ended! I have "graduated" to a rowing machine - I tolerate this really well bc I can exercise all my muscles at once while sitting down! Most days I am able to use it twice a day, and if I have a flare and end up in bed then I gradually start from scratch and increase the reps slowly. Again - thanks for the good news!

Yes, POTS is diagnosed if there is a sustained increase in HR of 30 BPM, or HR above 120, WITHOUT a drop in BP within the first 10 minutes of being upright. OH is diagnosed as follows, according to Mayo clinic Blood pressure monitoring. This involves measuring blood pressure while sitting and standing. A drop of 20 millimeters of mercury (mm Hg) in the top number (systolic blood pressure) within 2 to 5 minutes of standing is a sign of orthostatic hypotension. A drop of 10 mm Hg in the bottom number (diastolic blood pressure) within 2 to 5 minutes of standing also indicates orthostatic hypotension POTS and OH -- What’s the Difference or are they the Same? (leahynutrition.com) Criteria to diagnose OH & POTS (theoicenter.com) What is the Difference Between Orthostatic Hypotension and POTS | Compare the Difference Between Similar Terms

@Looking_for_light I am not sure that this forum can answer your questions, you might be better off by asking your physician? From what I was told by my specialist is to either eat a diet rich in fiber or take it as a supplement.

@MTRJ75 my 90 year old mom had Covid this year and did wonderful with Paxlovid. It really knocked the illness out of her and there was no rebound illness as reported with some.

@Looking_for_light my GI problems have greatly improved over time. When I was at my worst a EGD showed severe inflammation of espohagus ( I had Barretts ) with bile reflux and duodenitis. I also was deficient in Vit B 12, which gets metabolized in the stomach. I was put on Protonix, Carafate ( to bind the acid ) and wwhat is called a GI cocktail ( viscous lidocaine, Mylanta and Phenobarbital ). these meds taken over a few month really helped heal and prevent the erosion from excess acid. Now all I take is Protonix. Later I had problems with nausea and they did a gastric swallowing study which shows how fast the stomach empties. They diagnosed me with mild gastroparesis and for a while I was on Reglan but stopped it. Dietary adjustments have helped the most - I avoid carbs, eat a lot of protein rich foods and avoid large meals - I snakc every two hours, and that makes a huge difference.

@rtoth256 what is recommended - and I find extremely helpful when bedridden - are supine exercises that strengthen leg muscles and abdominal muscles. These muscles are essential in returning blood to the heart and prevent pooling. Examples are scissor exercises, bike riding in bed, crunches. The more we lay in bed the more we get deconditioned, which in turn makes symptoms worse. I do these exercises every hour or so when bedridden and then slowly graduate to sitting exercises, but these I do carefully. Eventually standing up - supported - for brief moments is possible. Compression hose ( waist high if tolerated ) is also recommended.

Yes, my doctors say that wrist cuff monitors are inaccurate in general because they measure the pressure furthest from the heart. They recommend arm cuff devices. In my experience even they are not as accurate as good old fashioned manual cuffs.

Not that I am aware of. I used to take seizures from not enough circulation due to excessive vasoconstriction, and they suspected that these could cause some permanent damage, but that was ruled out after MRIs and neurological evaluations. But I do think that the constant level of high stress that the increased adrenaline causes may result in negative effects.

@rtoth256 I have HPOTS with high BP, especially the diastolic. My BP is currently controlled but it took many years to find the right meds. Before seeing my excellent autonomic specialist I was seen by various cardiologists that did not know anything about POTS. Since Midodrine is a first attempt meds for POTS I was put on it, but of course it did not help. Once I got in to see the specialist he took me off it right away and said that Midodrine should not be used in people with high BP - like in HPOTS. It is usually used for LOW BP. The subtype is AVSOLUTELY important because different types will respond to different meds. Even a physician with little knowledge of dysautonomia should know that!

Me and one of my sister have mild hypermobility. Unfortunately not. Apparently so, since I got sick after giving birth and others in my family became severely symptomatic around menopause I could not tolerate clonidine, it was the pill form and it was horrible ( just my experience, it can be very helpful for Others )

@Looking_for_light I take in a lot of salt in y diet and I have HPOTS. However - sine HPOTS causes hypertension it is recommended to check with the cardiologist first to see if high salt intake is recommended

@Looking_for_light for me HPOTS runs in three generations of females in my family mother, two sisters, a cousin and six nieces all have it in various degrees of severity. I had symptoms all of my life but I became extremely sick with it after the birth of my daughter when I was 37. I have been disabled now for eight years. My mother and two older sisters also had problems all of their life but did not become disabled by them until menopause. The younger women ( 34 through 20 ) all have symptoms and all have had problems from the symptoms but are all yet able to compensate for them. In addition to the characteristic high BP and adrenaline rushes we all have tremors, brain fog, attention deficit, cold hands and feet, GI problems, vision problems, some have syncope and I have frequent syncope and seizures added to the mix. If you are interested you can read my story here I am so sorry that you are suffering from this and wish you all the best. Living with a little known chronic and often disabling condition is scary, frustrating and quality-of-life altering but I can assure you that we CAN live despite this condition. Hang in there, research for yourself, find physicians who take you serious and are willing to work with you in finding a treatment that is right for YOU. And hopefully you can find some help and comfort in this forum, we all are in the same boat here and we all understand the struggles. Be well!

@Looking_for_light a TTT CAN show HPOTS if the BP and HR go up AND you have symptoms. My first ever TTT showed NCS and the second one was clearly positive for HPOTS but not correctly interpreted by the cardiologist ( who did not know about the difference between the types of POTS ). Yes, it is not uncommon to have false results from TTTs, they are not the golden standard. My autonomic specialist diagnosed me based on the TTT, my symptoms and he drew catecholamine labs after lying down for 30 minutes and then after walking 30 minutes ( I could still do that back then, haha! ). The results came back after two weeks and both were elevated - anything above 600 is positive and mine were 900. That was what solidified my diagnosis. I am not sure if the urine catecholamine is as definite as the blood test. HPOTS can be diagnosed by symptoms alone but many docs want to confirm with the elevated adrenaline levels.

@MikeO I am so happy to hear about your improvement! Thanks for sharing the good news - keep up the good work!👋

@Looking_for_light I have HPOTS and I do not tolerate a lot of fluids by mouth due to stomach issues. So I drink gingerale like its going out of style and substitute salt by eating salty snacks - pretzels. salted nuts, pickles and olives etc. Avoiding large meals is very important to control symptoms of HPOTS, so I snack all day long. Avoiding carbs is also effective for me, and I tend to do better with protein rich food. Personally I could not tolerate salt tablets AT ALL, they made me throw up. But there is a product called Liquid IV that many people do well with. Coconut water is another good source of electrolyte rich fluid, so is broth. This article from our Information section may be helpful to you: