Pistol

@akj you graduated wirh honors!

Hi @akj - to direct a person directly type the @ sign followed by the persons name - in my case @pistol - the name will appear below and you click on it. That is how you can address a member directly.

@akj I am sorry you had to go to ER! I have been in your shoes many times, I used to pass out ALL of the time and was in the ER tons. What always helped me was IV fluids. Today I barely ever pass out because of my meds and bi-weekly infusions. But I do wonder - why meclizine? Did you have dizziness? Meclizine is usually prescribed for vertigo, or for dizziness that feels like you or the room is spinning. For me the dizziness from syncope is more of a lightheadedness, and loss of balance. Meclizine would not help with that, in my case at least.

@Macho319 I am sorry to hear that your test was abnormal, but I am glad that now you have answers. Proud of you for standing up for yourself and not giving up. I very much hope that the lifestyle changes will bring you relief. Hang in there and think positive!

@Macho319 That really depends on your job description! I worked for 5 years when I should not have due to passing out and having seizures at work. My PCP gave me all kind of restrictions and my employer ( I was a RN in a hospital ) accommodated all of them, from less days, shorter shifts, work only while seated etc. In the end I used up all of my FMLA and am now disabled for the past ten years. In the US an employer is supposed to accommodate any REASONABLE request to ensure your ability to remain employed, however they do not have to guarantee your employment if this causes them difficulty, or if you cannot comply with your job description. In other words - they CAN keep you on in any position they want but they dont have to. Here is a link to the Americans with Disabilities Act https://www.ada.gov/ you may find some information there. Best of Luck!

Hello @Asmaa I am sorry you are having all of these symptoms! Certainly they CAN be caused by dysautonomia. In order to get an accurate diagnosis I would first make an appointment with a cardiologist to schedule a Tilt Table Test ( TTT ). Then I would get a BP measuring devise and check BP and HR 3 times a day and when symptomatic, and keep a diary of the numbers, as well as your symptoms. The best way to help your physician understand what you are experiencing is by keeping a log. That also may help you find what triggers your symptoms. If you suspect dysautonomia you can do what most of us have to: increase salt and water intake, wear compression hose and avoid standing for long periods of time. You can also do what we call a "Poor mans Tilt test" - measure your HR and BP when lying, sitting and then standing. Here is a link on how to do this https://www.cdc.gov/steadi/pdf/Measuring_Orthostatic_Blood_Pressure-print.pdf For a POTS diagnosis the HR would increase 30 mmHg or more within the first 5 minutes of being upright without returning to normal, and without a significant drop in BP. I hope this helps. The best thing you can do at this point is research your symptoms and be prepared for your visit to the doctor. Check the information tab at the top of our website and click on POTS, you will find many valuable articles that can help you prepare for that visit. Hang in there, you are not alone, and there are many people here that went through what you are experiencing now. Best wishes!

I have Hpots and get tremors ( or shakiness ) when in a flare. It is - in my case - considered to have the same mechanism as going into shock from excess norepinephrine. In my case the vasoconstriction gets to the point of me having seizures from not enough blood reaching the brain. CCB, Carvelidol and twice weekly IV fluids have greatly improved these dramatic symptoms. Oral fluids do nothing for me, but the IV fluids provide enough intravasal volume to stop the dumping of norepinephrine.

@Macho319 My arms get HEAVY when I raise them above my head, and I also feel faint when I get back up from bending over. In my case this is directly related to dysautonomia.

@MikeO it simply means that you need to get checked by a gastroenterologist, to make sue you DONT have those problems. It does not mean you HAVE them.

@Machair if I am exposed to heat or sun I become nauseated. No diarrhea or anything like that, just sick to my stomach, and it happens pretty quick after being out in the sun. I always thought this was due to a drop in BP.

Thank You @Sarah Tee, you are very much appreciated here as well!

https://www.drugs.com/cg/abdominal-binder.html Hope this helps!

Hi - yes, I had to see 4 cardiologists and was not properly diagnosed until I saw an autonomic specialist. I too have NCS, as well as POTS. My first TTT showed NCS, my second was interpreted as normal but later the specialist said it was clearly positive for POTS. All of your symptoms are very familiar to me, and as others already said - they sound pretty typical for dysautonomia. Since There are changes from your last TTT I would ask for a repeat TTT to check for POTS. You are doing a good job taking care of yourself, by doing all of the recommended treatments and educating yourself about your condition. I am glad the beta blocker helps. I would not worry about a HR in the 50s, that is common with beta blockers, it happened to me in the beginning too.. Best of luck, keep us posted!

@Sushi - wonderful! Congratulations! What a feat! I would pee my pants having to even enter a home depot without a wheel chair or walker, and would not dream about standing ANYWHERE for 45 minutes! I am so happy for your improvement, you deserve it!

@Fernfairy currently the criteria for POTS is an HR increase without a drop in BP. Even healthy people experience drops in BP, which the ANS compensates for by increasing the HR in order to ensure that all organs are properly circulated. But a person with POTS can also experience drops in BP, just not every time, and the HR would have to elevate even when the BP is normal. I know, it gets confusing!

Yes, @Macho319, I get short of breath when I overdo things. Not even exercise, just overstimulated. I feel like I cannot take deep enough breath, but my oxygen levels are normal, so it is not REAL dyspnea. For me it improves with rest.

Yuuummmm!

This looks like a 5 star restaurants dish! What is the white gob on the right - mashed potatoes or hummus or mayo? ( I assume it is not mayo ... ) ?

@Nin I have received IV fluids over different times but I find that - for me - running it at a rate of 200 to 250 ml/hr has the best effect, even better if run slower yet. So that would mean running 500 ml over at least 2 hours.

@MikeO sounds like he is doing the right things. By pressing on the right side of the throat he probably provoked a vagal response. And it is really a good idea to see a gastroenterologist, I am surprised no one referred you yet! Hang in there, stick to your diet ( which you are doing such a great job with ) and be patient! Hugs.

@HyperPOTSGal I was not told to stop any meds. It was not a scheduled test, he just sent me to the lab after my appointment. I did have a TTT where I had to stop my cardiac meds three days before ( that was difficult! ).Personally I would be very careful to stop all those meds for that long. I would consider that the meds are more important than the test. Often meds are not ever supposed to be stopped suddenly, so maybe check first with the prescribing physician?

@Nin I get 1 liter Lactated Ringer Solution over 4 hours. Saline works also, but LR works better for me. Personally I dont think 250 ml would make much of a difference.

@HyperPOTSGal My autonomic specialist ordered catecholamines at his facility - University hospital. I had to lay in a recliner for 30 minutes, then they drew several tubes of blood ( I was not fasting ). Then I had to walk for 30 minutes ( that is the hard part ) and return to the lab and they drew another several tubes ( sitting ), /the labs were sent to california and it took about 2 weeks to get them back.

@MikeO an endocrinologist deals with all the mentioned issues - insulin, neurotransmitters, GI issues .. I would bring a list of everything you want him to address, including how you feel when your sugars are abnormal. I definitely would mention your nOH but likely he will concentrate on the diabetes. Good luck, keep us posted!

@saramichelle welcome to the forum! I too have hPOTS and Raynauds syndrome! I am sorry you have to live with this diagnosis, but please know that there is treatment out there, if you find a doc who will prescribe! I hope you have kind and educated physicians!