Pistol

@Crys I am sorry! I know exactly how you feel! My POTS started after the birth of my daughter ( who is now 18 ). I was completely overwhelmed between caring for a child ( and there was no family I could even ask questions ), working and taking care of a household. My husband thought I was "hormonal", others thought I had post partum depression. I struggled very hard to ignore my limitations and pushed through, in the end that is what made everything worse. When my daughter turned four I started having syncope and seizures, so that is when people realized there actually IS something very wrong. When I finally got a confirmed diagnosis I was able to educate family and friends but there still are a lot of people that think I am somehow at fault, whether it is laziness, attention seeking or mental illness. 

The following link has information about POTS that you can share with your family, maybe that will help them to see that you need help, and that you are not like other people. 

I really feel for you and know what you are going through. Please prepare your family that after the birth of your baby you will need a lot of help. If you explain to them that it is like that because of your POTS ( as outlined in the guide for family and friends ) and they can prepare for it you might get the help and support you need from them. 

Best wishes! 

@Sarah Tee I am so sorry you are going through this, and your worries are understandable! I used to be a nurse before I became disabled, and tended to many ostomies. The reason there are so many ostomy supplies is that each person has different needs regarding their stomas. When your skin is very sensitive there are skin preps that can be applied around the stoma before the wafer gets put on. I had a patient once who was bedridden and changed his stoma while lying down, so that is something they can teach you. That way you can do it at night when needed without having to get up. 

Having this in addition to all the other symptoms you already have to endure is tough, but I have no doubt it can be managed. It is very frightening and I understand your concerns. Please know that I have met many, many people with stomas that thrive and are minimally burdened by the maintenance of it. Be positive if you can!

@Ginger_ Overdoing things is one of my worst triggers, and it took a LONG time for me to learn what my limits are. Fortunately by now I know when to stop based on my symptoms. I had to listen to my body and respond to the signals it gives me. For example - I cannot stand for more than 2 minutes or I pass out, so when my legs start feeling heavy  I immediately sit down, even if I have to sit in the aisle of a store. That is why I have a seated walker or a small portable camp stool with me when I know I have to be on my feet. Basically I spend more time resting than active, and when I have to do a chore ( like mopping ) I rest, do part of the chore, rest, finish, rest. 

Physical Therapy can be tricky. I once had to get PT for a pinched nerve in my neck. Fortunately the therapist knew about POTS and only did exercises that I could do sitting or lying down. 

Next time you do your PT pay close attention to the signals your body gives you. Some days you might be able to do 10 reps and other days only 8. If you feel you had enough rest before you go to the next exercise. Don't compare what you can do with others - and dont let the therapist push you beyond what you can handle. 

@Jjbm Oh, I am so sorry you feel like this! Unfortunately being treated so ignorant by doctors is not uncommon for us. You said it right - your symptoms are not CAUSED by anxiety but THEY are causing anxiety, and that should be normal. I used to really freak out when I first got sick. 

Have you checked the articles and studies about Long-COVID on the top of our main page? There is a lot of very good information for you that might help you to educate yourself so you can explain to your doctors that it is not "all in your head". 

As far as I know cholesterol and elevated AST and ALT are not related to POTS but should be treated if life style changes do not improve the numbers. Sometimes they can be elevated from fatty liver disease. 

If your doctors do not want to treat your symptoms then I would find a different cardiologist or even an autonomic specialist. When you click on the physicians tab at the top of the main page there is a list of physicians that treat dysautonomia, you may find someone near you. Unfortunately most of us have to travel long distances to see autonomic specialists. 

You are not crazy, based on the description of your symptoms there is a great chance you light suffer from POTS. Your best action IMO is to educate yourself, keep track of your symptoms ( when does your HR go up and how do you feel when it does ), monitor your BP regularly and start a diary writing all of this down. Find a physician that understands dysautonomia and present your diary entry. Drink a lot of fluids, stay active ( exercise also helps to lower cholesterol ), and hang in there. You are not alone, most people on this forum have been in your shoes. 

https://www.dinet.org/info/longcovid/

@Sarah Tee to jump on your soap box - ten years ago I took my then eight year old daughter to a cardiologist after she fainted and complained of heart racing. She saw an older pediatric cardiologist that had 2 young residents with him. When I mentioned to him that POTS runs in our family he just looked at me ( you know that blank stare ) and made some dismissive comment about it, saying it was a "Fashion diagnosis" . I told him that in my case it had to do with elevated norepinephrine levels possibly caused by NET deficiency. He quickly changed the subject but I saw the two residents nodding their head in agreement with ME! That gave me a boost because obviously their generation of doctors had at least some basic knowledge of it. Hope is on the horizon!

@Sarah Tee what does OCHOS stand for?

11 minutes ago, Sarah Tee said:

I would have to call it chronic orthostatic intolerance, with normal BP and HR, caused by autonomic dysfunction.

@Sarah Tee so you have COIwNHRBP? 😉

@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. 

13 hours ago, rondo said:

I suspect the TTT I will be getting will not include CBFV, and so I am pretty worried it will come back as "normal "

(does that sound twisted, that I am worried my test for a serious and disabling condition will come out normal!?!)

@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. 

4 hours ago, Sarah Tee said:

What do you like to read?

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 

6 hours ago, Sarah Tee said:

Some people call it “POTS without the T”

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! 

15 hours ago, Birdlady said:

Mine is immediately upon waking. My hands are numb and have no strength in them. I have terrible back pain and stiffness. Both usually resolve about the same time after I get up. May not be POTS related.

@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. 

11 hours ago, Stardust said:

I haven't been diagnosed yet but I'm noticing this right now too. I see things mentioned that I experience that I always thought were just weird things I have for no reason are common in/related to dysautonomia. It's helping me compile a list of symptoms that I have but might not have thought would be related.

@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.