StayAtHomeMom

I want to say it is only about 20% of people with POTS actually faints. I have never. In the beginning it was close a few times with lightheadedness, but the worst were the dizzies. I get what you describe sometimes while driving (and I have a decent med combo right now). Turns out it is noise. A car near me thumping their music, or a siren going by. I live in a decent size city so it is going to happen. I usually stop if needed and lay down for a few minutes and meditate to get my heart rate and body in control then move on with my day. I had a bad episode of that a few months ago with my oldest son in the car with me. Totally freaked him out. He thought I was having a panic attack. It may look like that on the outside but inside I am calm. It is just my body having the attack not me. I avoid loud noises when I can and don't listen to music unless the volume is really low.

Also maybe compression stockings to simulate having his feet elevated. Cooling garments are a good idea too. Maybe a power chair that can adjust to a reclining position. Constant fidgeting helps me to sit but at this time I don't have dizziness so I can stand if needed. I only lay down at home and leave my house for 4-8 hours a day for work.

I have read articles about the same thing. Even pulmonary hypertension as a possible alternative for POTS. POTS is technically not a disease. It is a cluster of symptoms with an underlying cause. I kind of hope I have something that can be "fixed" so I can magically get rid of my symptoms. Probably won't happen considering I suspect a hereditary underlying cause but until I have an answer I still hold on to the hope. By the way I have seen a an article on a CSF leak misdiagnosed as allergies. It is crazy what a CSF leak can do to you.

All I can advise is get a second opinion. I believe it should be sustained but even if you ignore the 112, 63-80s is still an abnormal heart rate change. Was this data collected from an actual TTT?

Yes. We joke because on the rare occasions my buddies and I play Cards Against Humanity on game night I ALWAYS end up going first (for those that don't know, the rules state the one who has pooped the most recent goes first). I have all versions of diarrhea/constipation at different times, sometimes in the same day. Usually I just work around it. I don't get abdominal cramps much, just the urgent got to go feeling then after about 30 minutes it goes away. It can be frustrating but my doctors have shrugged it off. I don't have ibs or celiac, not allergies, and doesn't seem to be a medication side effect. I have had it since my symptoms started over 3 years ago. Honestly I am scared to have a colonoscopy because my sister in law had it done and the medication you have to drink was kind of terrifying. I have tips and tricks I use if it bothers me too much but mostly it has just become part of my life. I try to not let my symptoms overtake my life as much as possible. Nausea I eat pickles. Liquid kefir if needed. And Rolaids with gas relief for heartburn. Have you done a poor man's tilt take yet?

I agree with Pistol. Let your chiro know what is going on. You shouldn't be in pain. I have seen a few chiropractors. None have helped my main issues but I do feel generally better when I go. It helps when my body hurts less. I am due for my yearly reassessment in a few weeks and I am super excited to go. My back has been screaming for a good adjustment for a few weeks now.

I have had that issue. 2 years ago is when I noticed it. I take 1/2 pill of dramimine to take care of it. Check with your doctor and see if it is something you can try. Mine feels like sensory overload because it is just so much noise from so many bodies and I seem to have noise sensitivity. I usually avoid crowds when I can, but there are times where I can't/won't. My symptoms come on sort of like a panicky feeling and my head starts to swim. If I leave it too long I will get dizzy but I usually don't leave it go on too long without the dramimine or leaving the area for a few minutes.

Try other things to help with the hydration. I like to drink the vitamin water "revive". It has a lot of the electrolytes I need when I can't drink water. I also use the large PUR pitcher in my fridge for water. Also if my nausea is bad I like to eat pickles or green grapes to settle it. It seems weird but the sourness helps. Not sure why. Motivation I can't help with. My exercise is just going to work. When I get home I am too exhausted to do anything else.

I know it is frustrating but keep trying to find someone that will treat her Hashi's. Is it only her TSH numbers they are checking, or are they checking her T3 and T4 levels as well? I am kind of stumped to what is causing your daughters symptoms every time every day. The only think I can come up with is a medication. It is the only thing she is doing everyday. Keep tracking it and hopefully something will reveal itself. She definitely has complicated health issues. I hope she feels better soon.

Is she outside in the sun before this happens?

I would. At the very least the phone call can help alleviate the stress of another weird thing our bodies decide to do. Better safe than sorry.

Is it shortly after she eats?

I have lost my hearing doing nothing, mostly it is when I do something with my arms above my head. It is almost like everything fades out. Mine doesn't last long, a minute at most. The tinnitus gets me. Again doesn't usually last but maybe 5 minutes but it kind of shocking when a high pitched noise starts in you ear. I know tinnitus has to do with nerves, so maybe it is just a jolt through the nervous system. My hearing loss feels like maybe pressure. So maybe there is a buildup temporarily and that causes the hearing to go out? I don't know but these are my best guesses. I just wanted you to know you are not alone. It would be an interesting conversation with a trusted doctor though. Maybe they have some insight.

Without the raised heart rate they can't diagnosis POTS. Orthstatic hypotension is bad enough though. They may still diagnosis POTS if they have done testing in the office that shows the elevated heart rate. Depends on the data and the doctor. Technicians only have the data they are taking. After my first tilt table I felt the same way. Technician said that was not surprising since my heart rate went up to 130 within a few minutes and stayed up like that the whole 45 minutes I was upright. I didn't pass out or get close. Just got really tired like I was zombie walking to bed. After they laid me down everything came back where it should be. Very glad I had a friend take me. It would have sucked to try to drive home afterwards. From my understanding POTS and even some of the other dysautonomias can be hard to diagnosis and treat because symptoms can vary so much. Before my diagnosis I was doing a poor man's tilt table at home everyday for a month. There were a few days where my HR only rose 20 bpm. And others it rose as much as 60bpm. I tried to do my testing at the same time everyday and would sometimes add a test when I felt bad. By bringing this data to my PCP she was able to send me to a second opinion cardiologist and that started me on my road. Prior to that my symptoms were all "anxiety and smoking". Smh. Do you have any medical conditions that could cause the racing heart? Like thyroid or adrenal issues?

Could that maybe be a pinch in a nerve? I recommend a chiropractor as well. I have the issue where I lay on my left side and my right hand will go to sleep. No idea why. Maybe just one of those things. How often does it happen?

I am not sure exactly what cortisol test was but it was to check for Cushing's or Addison's. I can't remember which. I know I had to have a few blood draws and the they injected me with something in between. It has been a while since I had the test, that is why my memory is lacking. POTS always has an underlying cause. It is not a disease but rather a cluster of symptoms. I still have not found mine but I have a high suspicion it is autoimmune since that runs so high in my family. Finding the underlying cause can be hard but in theory if you take care of the underlying cause then your POTS symptoms can resolve. Key word: in theory. Have your doctor's done a urine catacholmine test yet? If not I would ask for it. It can determine if you have HyperPOTS.

I had a cortisol test done too. Mine was normal though. Maybe you got really lucky and stumbled on your underlying cause. Hope your doctor's continue on this trend of looking things up to help you. I have met doctors that wouldn't.

Sometimes drugs are necessary to get it under control to do the natural things. My husband is learning that the hard way. I hate medication, and the idea of being on them for the rest of my life makes me shudder but I take mine grudgingly. Because if I don't I feel awful and I want to not feel that way.

Neither of my TTT had an IV or any medications. I just couldn't take my meds for some time before my tilt table. They hooked BP cuffs on both arms and the second one did a cuff on my finger. Had me in a quiet dim room and had me tell them when I had symptoms and what they were. Honestly the IV may have delayed your response and the doctor knew it would so he considered that in your test. IV solutions have been used for treatment in some people. I would talk to your doctor and see his reasoning if it bothers you. I vaguely recall reading something about delayed response POTS as well. Good luck and hope you get your answers.

I have a throat tighness issue. I have to drink while I eat now and there are times it just feels swollen. Had an endoscope done in the beginning and they said I had a stricture but no reason was given. They ablated it but it didn't help. I have allergies but no MCAS. I don't have an underlying cause yet so not sure if that could be part of it. I just eat and drink smaller mouthfuls and drink while I eat. If it bothers me I drink something cold and it opens up a little for me. I would definitely have it looked at though just to make sure. When I first got sick food was hard for me to eat. Honestly I feel better with no bread or pasta but I like breads. Keto diet is my next step as soon as I can find something to replenish my electrolytes so I don't get the keto flu. Good luck and I hope you get answers soon.

Doctors are human and can make mistakes. They are also taught most things that are wrong are the simple things. Dysautonomia is not one of those simple things and appears to be uncommon (if not rare). If your doctor seems to dismiss you, find another. If they don't seem to be able to adequately explain symptoms or issues, find another. Most of us have had to go to a lot of doctors to find good ones that take care of us. Don't give up and remember they are only human.

Try have your eyes looked at. Maybe an ophthalmologist will see something. You are correct, I take a beta blocker for my POTS. Another option is try a different beta blocker. I take metoprolol and it works well for my tachycardia and heart palpitations. Propranolol is what I tried first and it caused my breathing to get worse than it already was.

See if she will take you in order to confirm if you have POTS. If she thinks you have a different one then maybe she could send you to a doctor that specializes in that one. The only other option would be to try something like mayo to get the diagnosis and then find a specialist for what mayo says. My cardiologist diagnosed me with POTS, then when I was having breakthrough tachycardia he sent me to a specialist a few hours away who confirmed my diagnosis by redoing all of my testing. He is a neurologist that specializes in POTS; NCS; PAF; Secondary Autonomic Failure; MSA; Autonomic Neuropathy (including diabetic)

A rheumatologist is who can diagnosis fibromyalgia and/or connective disease disease. Fibromyalgia is usually tested for by pressing the trigger spots. There are 22 of them I think and if you have at least 10 then they diagnosis you. Finding a good rheumatologist can be hard though. My mom had RA for years and they kept saying she didn't. Even though she was sero-positive. With severe symptoms. Personally I think she has other things going on as well, but she is having a hard time finding a good doctor where she moved. Personally I have had joint pain since I was a teenager and the few doctors I have mentioned it to just threw NSAIDs at me. I get the most relief from a good chiropractor. I am thinking it actually may have something to do with my underlying cause for my POTS but I am showing nothing in my blood work. I have plans to see a new set of doctors in a nearby city to investigate underlying causes before the end of the year. I hope you get some relief soon.

Some people don't seem to need to know or care what type they have. Personally I am one of those people that need to know. And my underlying cause, which is still unknown right now. I think it matters because treatment would be different for each type and I refuse to be a guinea pig any more. I seem to react differently to medications and I refuse to take medications just to confirm a diagnosis. I would try to find a specialist.