Pistol

@rondo I also have macrocytic anemia, or at least used to have it. I am on Vit B12 shots and fatigue is better, also my CBC's have improved.

@rondo no, it does not sound twisted. We are so used to getting no answers and no one knows what is going on with us that it is almost a relief when we finally get an abnormal test result! I know that after years of being told there is nothing wrong with me I hugged my autonomic specialist when he confirmed my HPOTS diagnosis with a blood test! Although after that there were still many docs who have no clue what that condition even is but at least there is a name!

@MikeO we squeaky wheels get all the grease 😉!

I also have a wonderful cardiologist whom I started seeing when my autonomic specialist was no longer needed. He admitted that he did not know much about dysautonomia but was willing to educate himself and worked with my specialist. He practices at an university hospital and was instrumental in spreading education about dysautonomia there. Today he sees many POTS patients and has said that I was his first diagnosed POTS patient but learning how difficult my journey was he was determined to help others. This kind of physician SHOULD be the norm!

Hello @Dawson I usually do better with high elevations than low elevation. I live in a mountainous region and when I travel to the ocean ( obviously at sea level ) I become very ill. I would just prepare by resting before hand and by drinking a lot of fluids. Be safe!

@Sea otter Years ago I had testing for MCAS ( which I do not have, thankfully ) and they tested histamines, which were OK if I remember correctly.

@Sea otter Histamine dilates blood vessels, so it will make POTS worse. There are certain foods that make things worse for me, but even if I just have a stuffy nose or an insect bite I will flare, more or less. Spring is a high-allergen season, so my symptoms usually get worse in the spring.

Good question ... I pretty much read several books at a time. I love a good novel, especially historical fiction. Then there is the bible as well as other spiritual books, news paper .. it all depends on what I feel like at the moment. To go to sleep I usually choose a novel, puts me out like a light, unless it is a really good one ...

@Sarah Tee What helps me when I can't sleep is reading before bed and a white noise machine. I can try to listen to the background noise and fall asleep.

Where I live no one wears a mask anymore, even the local hospital does not require them anymore as of January. I had COVID twice and do not fear it but I think that anyone who does should take any precautions they deem necessary. People say masks dont help but I have to say: how can't they help? They may not be 100% safe but no doubt do they help avoiding contact with germs in the air, as well as prevent us from spreading the virus. I am all for masks IF YOU WANT TO WEAR THEM. COVID is no joke, and yes - people still die from it.

@Stardust if you buy a BP monitor at a retail pharmacy the staff can help you find the right product, and they can show you how to use it.

@Sarah Tee My sister has this and has been diagnosed with autonomic dysfunction, autonomic neuropathy, and was diagnosed by skin biopsy with SNF. But in all reality she has what I have - HPOTS - but she does not have the tachycardia. So, she has 98% of the same symptoms as me but cannot be diagnosed with POTS!

@MaineDoug It will be difficult to get your POTS under control as long as you are in so much pain and unable to move. I had several surgeries while my POTS was at its worst and did have some complications from anesthesia but nothing that couldn't be handled. There are some special considerations for anesthesia for dysautonomia but considering that your quality of life is so poor I hope they will see that after the hip replacement surgery ( and careful rehabilitation afterwards ) you should have a much better outlook on getting your POTS under control. Wishing you the best of Luck with the doctors!

@Birdlady I developed generalized joint pain at the same time as my POTS became disabling and my autonomic specialist said that many POTS patients complain baout this symptom. My joints felt horrible every morning and remained stiff throughout the day. It would only get better if I moved. I was put on Plaquenil and after a few months of taking it I no longer have these joint problems!

@erinlia I have HPOTS and Raynauds, as well as Prinzmetal angina ( kind of Raynauds of the heart ). In the beginning of my illness they did not know about HPOTS and ordered Midodrine. It was ineffective but did not noticeably make my POTS or Raynauds worse. Once diagnosed by my autonomic specialist with HPOTS he immediately stopped the Midodrine because he said it is not the right med for my case. After many med trials I found the best relief from Carvelidol and Diltiazem ( a vasodilator ).

@MikeO @Stardust I know that most doctors are being pressured by insurance companies to only order tests for certain ICD10 codes. In the old days a doctor could just order any test they wanted for any reason, like "rule out something". Now there are set guidelines which only qualify a patient for testing if there are certain symptoms or abnormalities in exam or lab testing that have to be present in order to "earn" a test. MRI's are a perfect example - they are very expensive, so a doctor has to justify ordering one. Often there have to be other tests done first that were negative before a MRI can be done.

@Stardust You can check with the medicaid provider in your state and ask them to either tell you what specialist they recommend or you can ask them to add a specialist to their list of providers if they dont have an autonomic specialist. I did that once when my daughter needed to see a pediatric dermatologist but my states medicaid did not have one. It was a fight but in the end she could go out of state.

@Stardust When i saw my autonomic specialist for the first time he gave me a paper with a long list of symptoms, then he asked me which ones I experience daily. I had to admit that I had all of the symptoms almost every day. His remark was : "that's what they all say". It was the first time I realized that it was NOT all in my head, or that I made things worse, or that maybe I could just snap out of it. It was oddly reassuring, to know that I am "normal" within the POTS category, Lol! I later realized that I had typical symptoms of POTS all of my life, but that I always had dismissed it as something that was just me. Craving salt, crossing my legs all of the time, feeling faint easily, being easily overwhelmed, racing heart, stomach issues --- in retrospect I noticed that all of these are symptoms of POTS, or rather a compensation mechanism. So it is a very good idea to write down your symptoms, even if there are a lot. Sure, some docs will do the eyeroll when a patient walks in with a long list of unexplained and vague symptoms, but a good doctor will address them and try to help you find a treatment AND find a cause. Be brave, and know that your symptoms are real.

@Stardust there is a physician list on the main page of this site, click on the physicians tab on the top bar.

I think this really depends on the doctor. I have found that most docs are ignorant towards our illness, probably because it is so frustrating to find the right treatment. But I have found that you cannot argue with an ignorant doctor. However - I have found some doctors that listen and admit that they dont know how to treat my symptoms - but they help me anyway, and work with me trying to find a treatment that works. I am lucky in so far that I have an amazing specialist, a patient and caring PCP and a local cardiologist who educated himself about dysautonomia and is working together with me and the other docs, and because of these three people I am much better today. So my experience was to fire those who are not the right fit, and keep kissing frogs until you find the prince!

Hello @Dystasysta I am so sorry to hear this! I know exactly what you are going through, I too am severely sensitive to stimulation. Talking on the phone, the shadows of trees when driving, noises, lights - everything you mention triggers me too. I had to pretty much withdraw from any social activities and contact for years, which left me isolated and depressed. What helps me is planning my activities carefully. If I have a doctor appt I rest the day before and after. I schedule all trips to offices or banks etc first thing in the morning, when I have the most energy, then take the rest of the day off. Cleaning or laundry get done throughout the day as I feel like it. I have been disabled for ten years, so I have had time to learn to listen to my body, and this has given me some quality of life back. I find that I cannot do what others can, or whenever I want to. On bad days things may have to wait, or appointments may have to be cancelled. On good days I have to make sure I allow myself enough rest. It is important that we are good to ourselves, and having social interaction is - for most people - a necessity. Try to schedule a phone call with a friend or family member when you feel up to it, find a hobby or activity that you enjoy ( I do knitting ). Surround yourself with things you enjoy ( plants, a pet, good books etc ). I used to live in an extremely rural area and this made the isolation worse. I could not drive anywhere since we lived over an hour away from any town. I moved to a rural town and now can walk to the bank, or post office, or my doctor. Getting out and seeing people and becoming more active has DEFINITELY helped my well being, and even some of my symptoms! Be patient and kind with yourself, and try to find things everyday that you enjoy, or that you are thankful for. Best wishes!!!!!

Hello @rondo. My symptoms became severe in 2009, when I started fainting at work with sky-high HR and BP. I developed full blown HPOTS but was not diagnosed - or even taken serious - by several cardiologists. The first TTT showed NCS, since I actually fainted. I asked for a referral to a renowned autonomic clinic and had autonomic testing which turned out to be normal. A year later I saw my autonomic specialist who listened to me, looked at all of my testing and told me that I clearly had dysautonomia. He diagnosed me with HPOTS and confirmed the diagnosis with adrenaline testing. If your neurologist is experienced in dysautonomia he/she should be aware that there is no actual proto-type to compare us to. I know people that are disabled from POTS symptoms but may not have tachycardia, or may have fluctuating BP changes. Does that mean they don't have POTS? No, it just means that it takes more than just a few tests to come up with a specific name - other than dysautonomia, autonomic dysfunction or orthostatic intolerance. Remember - our symptoms can come and go, and we can even have normal TTTs or other tests. That does not make the symptoms less real. And even if the tests turn out to be normal - that does not mean the docs have to stop finding a treatment that works. It is a long road to find out what i wrong with us, so be patient and stick with the docs that listen and believe you.

That is good news! Keep in mind that for many of us the dosage may need to be adjusted up or down over time, so dont be surprised if that happens to you!

I have HPOTS and always, every day, have the most energy in the morning. I pretty much jump out of bed and can do light chores until about 10 am, then I fall into a slump lasting the rest of the day. I do believe that in my case this has to do with sympathetic activity, although it seems that the adrenaline wears out my reserves quickly. If I push myself past my limits I go into Fight-and-Flight mode. My theory is that I can benefit from the adrenaline for a while but my body does not process the adrenaline correctly and when the levels become excessive I over-compensate. If I rest and allow my levels to come down slowly then the parasympathetic system takes over and I bottom out. At least that is how I explain it to myself.

@Machair I DEFINITELY become worse depending on the seasons. In the fall my BP usually goes up and I have to increase my calcium channel blocker for the winter. Then, around April or May, my BP drops lower again and I decrease the dosage. Summers are definitely my worst season - I cannot go outside to even sit when it is hot, and even the bright sunlight causes problems for me. Fall however makes me the best version of myself - that is the high point of my year! I contribute these changes to temperature and barometric pressure changes. I have read articles that claim barometric pressure changes will affect the pressure in our vasculature as well as how much oxygen gets carried on the blood cells, so I think that is the reason.