Pistol

Well - this is what happens …. my husband had to have an EGD and I was the designated driver. ( I am homebound and have not driven in years but it was the only option ). While in the hospital waiting I visited with many of my old co-workers ( I used to work in that hospital before becoming disabled ). Lots of hugs, stories, gossip etc. I had breakfast AND lunch there ( I do not usually eat meals as they often make me feel worse ). So - just a wonderful day of bad decisions. Everyone was impressed how well I am doing and I boasted about my improvements. Well - when we got home I was soooo wired! Full of adrenaline, could not sit still or come down from my high. I told my husband that I would probably be up all night. Around 8 pm I crashed - all of a sudden, like someone flipped a switch. Confusion, dizziness .. and then I could no longer be upright, I had to crawl and still passed out. My husband took me to bed, I fell asleep immediately and did not wake once. This morning I am still bad ( I tried to brush my teeth with the toothpaste and put my pills in the coffee filter ….🤨) - so I am bracing myself for a few days of being out of commission. This unfortunately is what a good day can be like for a POTS person. This is exactly why it is an invisible illness, why people do not understand why we cannot function and also a good reminder why we should not try to " blend in" - as this obviously can backfire. I truly should have known better and just stay put in a chair with my hands folded - but I had such a good time acting normal!!!!

I agree with @MomtoGiuliana. I had low b12 all of my life and have received supplementation several times. I now have been on monthly shots for many years. I had low B12 when first becoming symptomatic with dysautonomia. I also used to get these spasms on my hands where the hands would turn into an " inverted claw " without me even knowing it. I have not had this for a while.

What exactly do you mean by this? How are you hurting yourself? Did you mean that you are FALLING and hurting yourself? If so - go to the nearest Emergency Room and have them evaluate you. Look at our physicians listing and pick an autonomic specialist ( be aware that there may not be a specialist in your area and travel/ waiting times may apply ). Often if you see a specialist ( neurologist/ cardiologist etc ) and they are not able to determine what is wrong with you you may have to get a second opinion. When I was diagnosed with dysautonomia but the local doctors ( actually the doctors in my state ) were unable to help me I went to one of the major autonomic specialists in the nation and got help. Do not give up, do not give in and keep asking for help!!!!!

@Random-Symptom Man - are you seeing a neurologist? Are you seeing an autonomic specialist? It could very well be that your cardio-vascular symptoms are a product of an underlying neurological problem - and vice-versa!!! How is your thyroid/ lyme titer/ vitamin B12 and D levels/ -- have you had an EMG, TTT …… so much more to explore! I wish you the best, hang in there and let them test you further!!!!!!

Wow - what's your secret? 😲

How frustrating! A good physician would not go solely on the numbers but also on symptoms. So - symptoms and an increase of 30 bpm upon standing within 10 minutes = POTS ( IMO )

@Sufferer - a good HR measuring device should be able to detect an increase in HR upon standing. In order to determine if your dizziness upon standing is caused by POTS or another dysautonomia you should check this out This tells you how to measure your orthostatic vital signs properly.

@Sufferer - POTS causes orthostatic symptoms when your HR increases upon standing but your BP stays about the same. You do not have to have abnormal BP to have POTS.

@lieze - yes, bending over makes my symptoms much worse. If I pick up things off the floor as you describe ( like straightening a room ) I get very lightheaded and often feel like passing out. I have to take my time, rest after every few minutes and have even picked up while sitting on the floor, to avoid getting up and down. ( I thought about sitting on a mop while doing that - saves time mopping, too! 😁)

Dear @Nicoline - an echocardiogram will show the actual structure of your heart and an EKG ( electrocardiogram ) will show the electro-conductivity of your heart. 2 different ways to look at the function of your heart. Having these tests ordered does not mean that there is anything wrong with your heart - but rather that the doctor wants to MAKE SURE that your heart is OK before he/ she will consider any other causes. In medicine a doctor will always rule out the most obvious first and then narrow down the other causes.

@Nicoline - your symptoms sound familiar. Here in the US a doctor would commonly prescribe these tests: EKG, Echocardiogram, holter monitor, complete blood work including iron and vitamins as well as thyroid panel, orthostatic vital signs. After that they often want a Tilt table test done to evaluate the orthostatic symptoms - this test would show if you have POTS or NCS or both ( although it can give false results ). Good job with increasing salt and hydration. You may also add compression stockings - that can help enormously, especially in mild cases. Good Luck!

@Scout - my PCP and I had contemplated me seeing a rheumo for the joint pains for a long time but I always decided against it b/c I figured that I would not be able to take the meds they prescribe anyway ( i.e. steroids ). But recently I had a weird reaction to a severe double earinfection - both my parotid glands swelled up. My PCP was concerned that this was AI ( ENT said it was not related to the ear infection ). So that is why I went to the rheumatologist. I think that with your symptoms and the fact that you had one positive marker in the past it would not hurt to be seen. I always say that ruling something out can be better than having a definit diagnosis. Good Luck!

Update - @p8d: I saw the rheumatologist and he checked EVERYTHING autoimmune wise. I am a perfect specimen - nothing was abnormal. So autoimmune issues are most definitely ruled out. Which does not explain why we have joint pains. I do not have EDS. Joint pains are mentioned as a common symptom of dysautonomia but - why do we have them? How does the ANS affect the joints? I have not seen improvement since exercising daily, so it cannot be inactivity. And when I m in a flare - as I currently am - the joint pains are much worse. But the weather is changing too, so maybe it has something to do with that?

I am very exercise intolerant and take many medications for my tachycardia and hypertension, hence my HR does not go up very high any longer. I started using a rowing machine daily and I know I hit my limit when I get short of breath and my heart beats out of my chest - but the actual rate rarely goes above 100 from exercise. My current limit is 1 minute and 15 seconds when I feel I cannot go any longer, so I agree with your suggestion of using perceived exertion. If I would push myself trying to hit a higher HR I would mostlikely pass out and then have to stay in bed for several days.

@bombsh3ll - I read an article stating that flight can improve POTS symptoms b/c the cabin is under-pressurized, therefore causes a different homeostatic environment. I personally suffer from extreme vasoconstriction from POTS and while flying this seems to improve. I do experience severe swelling in the legs while flying, which cn be minimized by using an aisle seat and doing specific foot and leg exercises throughout the flight.

Dear @dancer65 - I am so sorry to hear what you have went through! And I am glad that the legal struggles/ Threats are over. It is so very hard to deal with the helplessness that dysautonomia makes us face - I cannot even think how I could make it through a struggle as yours - but what matters is that YOU DID IT! Be thankful, be proud and be generous to those around you. I m glad you shared, I am thankful this forum has given you comfort and courage and I am so happy that you are in better place now. Best wishes - be well!

@potsiebarbie - the first thing to say with this kind of pain is to go to the ER. Left arm pain can be a sign of a heart attack, especially in women who often experience " silent ' heart attacks. however - since you had this for a while and had unremarkable EKG's it may not be that. It could be related to the muscle but I would definitely bring it up to your doctor.

@joiedevivre - there is a simple exercise for this with the same purpose: you stand close to a wall, feet about one foot apart, and then you lean against the wall with your upper body. This way your weight is carried by the wall, not your legs, and you can practice being upright. It is a well-known exercise for orthostatic tolerance. I tried it - it works.

@Scout - you should let your family/ friends read this thread!!!!

Dear @Scout - I completely understand. In my case it was like that in the beginning with my family. My siblings and my in-laws felt that I must be either faking or doing something wrong. Even today I find that people not familiar with my illness think that I should " just do more and be more active" and I would improve. What they see is a healthy looking person that is disabled - but I am not blind or paralyzed or have cancer. So why do I mostly stay in my house, do not go to events or shopping with my daughter? --- What they do not understand is that IF we did these things we would be so very ill and most-likely end up bedridden. I have improved since getting weekly IV fluids, to the degree that I no longer have seizures and rarely faint, I feel better and have more energy, I can do chores every day. But I still have to watch what I do and when I do it or I pay for it. For example: on Sundays I have to choose whether I go to church or spend the afternoon with my family, I cannot do both. So people from church do not understand why I am " too sick " to come to church but can cook a meal and play monopoly that afternoon. I understand why they think that. If I went to church and spend the rest of the day in bed they would say: " I just saw her in church and she looked perfectly fine". We cannot win! --- Once I was in an airport in a wheel chair. When I came to the metal detector I stood up to go through the scanner and the scanner guy said: " If you can stand you do not need a wheel chair." I answered dryly that if I had no wheel chair I would have a seizure and never be allowed on the plane. He just frowned. Since we look good and all body parts are functioning we must be healthy - that is the common opinion. I have accepted that this is how it is and no longer try to justify my illness or symptoms to others. Most people know that I have " a condition " and am disabled, that has to be enough, I do not expect them to understand. My husband, daughter and doctors know my limitations and that is good enough for me. You may not be able to convince your family that you are ill and have to use a wheel chair - but so be it. My brother and his wife think that i want attention and that that is why i use the wheel chair. I don't care. I have learned to let that attitude roll right off my back and if you can learn to ignore their comments or opinions your life will be a lot easier. Remember - if DOCTORS do not understand our illness then how cn we expect family or friends to understand it? ---- Hang in there, Scout. If they could live in our shoes for just one day their attitude would change. Be well!

What does your physician tell you about these concerns?

@bombsh3ll - what is PMR?

Hi @JimL - I have been experiencing joint pains since onset of POTS in 2009. and I also have trouble with my hands, especially in the morning Recently I saw a rheumatologist and he did most of the tests that you just did and - voila, all is normal except for the ESR, that was elevated. I have not seen him for a follow-up but thankfully this means it is not autoimmune related. The fatigue you describe sounds like dysautonomia type fatigue to me, I have it too, some days worse than others. Since your Vit B12 and D were normal it would not be that. How about iron - did they check your ferritin? --- I hope you will get some answers at your follow up and I hope you will be better soon! Hang in there!

@bombsh3ll - this is a decision solely between you and your doctor. It is an individual choice that cannot be made for you - but only by you.

@lieze - if I am correct medicare does not cover those types of services. You could call your medicare plan and ask for a case manager - they can advise you as to what your plan covers. If not covered you can get those services on your own, check with local home care agencies or senior services ( even if you are not a senior - they can give you contacts for these types of services ). You can also check advertisements in your local paper or advertise yourself.