Pistol

@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!

57 minutes ago, MikeO said:

A good employer should make some accommodations for you (not unreasonable to ask).

@Neomorph I agree with this statement. My employer exhausted all avenues before we decided I could not work anymore - shorter shifts, less days, desk job, wheelchair, extra breaks ... before they let you go they should see if they can keep you on in a different function. Although the law here in the US states that they do not HAVE to do this if the accommodations are unreasonable. The employee must be able to fit the job description. 

@Neomorph yes, HPOTS means hyperadrenergic POTS. This type of POTS is - different than other types of POTS - caused by excessive vasoconstriction. So commonly prescribed POTS meds will make it worse, because they address vasodilation. The biggest difference in this type - that I have found - is the tachycardia and symptoms are accompanied by high diastolic BP, cold hands and feet, and tremors. 

@Neomorph I was diagnosed with HPOTS many many years ago. At that time I was working 12 hour shifts as a RN in a hospital; I tried to keep my job and pushed through the shifts, despite passing out and dealing with all of the other symptoms for two years. then I had to stop working all together. I am disabled today, but I can honestly say that I know now that continouing to work made my illness so much worse. Exercise is definitely an must, but being on our feet and not being able to respond to our symptoms is a nono! Today I am able to walk and do mild housework and when I could not do that I used a rowing machine. But I HAVE to be able to sit or lie down and rest when things become too much, or I become really bad. Only by balancing rest with activity and being able to take things slow on bad days have I been able to regain some quality of life ( in addition to meds, treamtnets and IV fluids weekly ). 

So, based on my experience, I would look for a job that accomodates your needs better than the one you have now. As @MomtoGiuliana said - that job seems very stressful and challenging even for a healthy person! 

Also - when you order compression hose please make sure you take the right measurements to get the correct size! 

@mostlyelbows I am glad to hear your new GP is listening! Adderall and zoloft sound like a possibility - my specialist put me on escitalopram and ritalin ( same type of meds ) and the combo has been very helpful for some of my symptoms. Best of luck!

@MDmom I have HPOTS with autonomic seizures. I also have NCS ( neuro-cardiogenic syncope ). I used to pass out and also have what appears to be grand mal seizures. I was hospitalized for 5 days on an epilepsy monitoring unit ( EMU ) where I was 24/7 hooked up to an EEG as well as a heart monitor. I had a seizure there and it was proven to be non-epileptic but of autonomic nature. When my blood vessels relax too fast I pass out, and when they spasm I seize, both due to not enough circulation to the brain. 

I also have experienced episodes of presyncope that sound exactly like what you describe. One example I vividly remember: I was sitting next to my husband in my doctors waiting room and suddenly i was in a dream-like state, I heard everything that went on around me but could not move. Noises sounded like they came through a tunnel. My eyes watered and I could not blink. My husband was trying to get me out of it but I could not react, nurses came and went and in the end I "snapped out of it". They determined it was presyncope. The odd thing is that normally my episodes happened when I was upright and sometimes stopped when I lay down, but this happened while sitting down. After that episode I had others that happened when sitting. So my guess is that it may be presyncope what you experience, especially since you state it feels different than your seizures. 

11 hours ago, MikeO said:

She said that this particular form of neuropathy not only affects the nerves responsible for gardening the digestive process, but also affects things like the vagus nerve (nausea and knowing when your stomach is empty or full).

That is very interesting mike. I find that certain foods make me fill sated ( especially high protein foods ) and carbs make me crave more ( so i avoid them ). What you are mentioning might be a possible explanation. Thanks for sharing your experience. 

17 hours ago, mostlyelbows said:

I guess I'm just wondering if anyone else has experienced this kind of disassociating brain fog from POTS/dysautonomia and if there was anything you did that helped with it, even a little.

Hello @mostlyelbows I am soo sorry you are being treated like that! Brsinfog is known, common and explainable symptom of POTS, so this cardiologist is not only ignorant but also incorrect. It is unfortunately that there are STILL so many physicians who are convinced that POTS is not as widespread as is actually is! 

I have HPOTS, which is a different mechanism that other POTS types since the symptoms here are caused by excessive vasoconstriction. However - it causes brainfog and most other symptoms just as much. Regardless of the mechanism behind the symptoms - brainfog is a type of presyncope and is usually caused by insufficient cerebral circulation. Most POTS patients experience blood pooling resulting in the blood not reaching the brain and the body having to work harder to pump the blood back to the heart. Midodrine is commonly prescribed if this is caused by excessive vasodilation, and can be very effective. In my case I respond better to vasodilating meds such as calcium channel blockers ( which would make other types of POTS worse ). 

There is no ONE treatment that helps every patient with POTS, even if the type is the same. Most of us have to try many meds before we find what is right for us, and any physician that understands POTS would know this. You are already doing all the things you can do yourself without relief, so medication is usually the next step. Beta blockers are commonly prescribed, but so is midodrine. Since you have to wait so long for the specialist appointment, can you see another doctor in the mean time and ask for another opinion? 

Here are a few articles that may be of help, and hopefully you can use the information to present your case : 

https://www.dinet.org/info/pots/what-are-the-mechanisms-of-pots-other-forms-of-dysautonomia-r97/

https://www.dinet.org/info/pots/patient-guide-preparing-for-the-er-new-medical-visits-r151/

https://www.dinet.org/info/pots/pots-an-overview-r95/

I had PT once after an extreme bout of POT left me bedbound for a while. They wanted to get me reconditioned again. the therapist determined my level of OI bu having me stand holding on to a counter until I became symptomatic and my HR went up. ( I started with 35 sec three times in a row, and after a few weeks I could consistently do 2 minutes. )

They determined my exercise tolerance by starting me with supine exercises then sitting then standing. Each time I started an exercise they determined how long I could do it until I became short of breath, shaky and weak. And again they used my HR readings. These readings were used to establish my baseline. 

I am sorry @keenly, I meant that maybe you are taking too much antihistamine?

@keenly I get this type of dizziness when I take two benadryls. I am OK if I take just one. I wonder if maybe there is too much of it in your system? 

@Emily22 I used to get very nauseous with salt tablets and had to stop them. I eat a lot of salty snacks throughout the day, so I get enough salt that way. For nausea I take zofran, it really helps. It comes in orally dissolving tablets, so it works fast

For me I saw a difference in pots symptoms and also an increase in energy ( which then allowed me to be more active ) with a diet rich in protein, avoiding carbs and sugars and eating six snacks a day instead of three large meals. Snacks will be nuts, or fruits or veggies, and the proteins for breakfast, lunch and dinner. This gives me good nutrition, even sugar levels, no postprandial symptoms and I am rarely hungry. I used to be underweight until I became disabled from POTS and was essentially homebound. The inactivity made me gain weight. Since on this diet I feel better, am more active and my weight has been in a healthy range. 

8 hours ago, Emily22 said:

Is there a link between PoTs and gallstones? Has anyone had similar symptoms? Also at what level low bp should PoTs patients  go to hospital? 

@Emily22 I am not aware of any relation between gallstones and POTS per se, but any illness or infection can worsen our symptoms. As to when to go to the hospital - if she has persistent low BP with symptoms like dizziness or feeling faint she should be evaluated. It is possible that she is dehydrated and may benefit from an infusion. Is she eating and drinking OK?

Yay @Sarah Tee, I am happy and hopeful for you! It is so very important to be able to trust in the abilities of our docs, and I hope they will listen to and help you! But do the coffee and cake AFTER the appointment - so your BP wont go up from sugar and caffeine 😉

@AngieP I have prinzmetal angina, and I too get chest pains especially at night, but for me it is a dull, heavy and sometimes squeezing pain. I also get the cold hands and feet during these episodes, which - I am told by my cardiologist - is the same cause as the angina: excessive vasoconstriction, or vaso-spasms. 

You describe waking with a heavy head - this could be from insufficient circulation to the brain. In some women the weight of the child can cause this when supine, but I assume that in the first trimester this is not the case. Have you asked your Ob/GYN about this? 

@MikeO that is really interesting!

@Bergbrow I have heard people mention Buboprion ( Wellbutrin ) for this before.  It is an SNRI and is supposed to help with balancing norepinephrine and serotonin in the brain. I took it for a few weeks and felt good on it but had to stop because it caused me to develop acne ( a rare side effect ). Maybe this could be something to try?

1 hour ago, MikeO said:

I have no idea what a adrenaline surge is (palpitations?) Rather than blaming dysautonomia it may be just to normal hormonal surges that will wake up even normal healthy folks.

Hi @MikeO adrenaline surges are quite noticeable, and different from restlessness or just palpitations. It is an internal excitement, comparable to the jolt of energy you would get when you go for a stroll and around the curve is a mountain lion. But there IS no mountain lion - and yes, it CAN happen in the middle of the night. And all the bodily reactions that would happen in an acute frightening emergency situation will happen - except there is no emergency, and there is no anxiety setting it off. 

@Bergbrow I know that feeling, although I am controlled on meds and treatment, as well as lifestyle changes, and only experience this when I am in a triggered flare. The only thing that ever helped me through this was rest, avoid overstimulation, and develop a daily routine that I could safely follow. 

@shilaba80 For me the problem with insect bites is that the release of histamine causes vasodilation . With hEDS you already have too dilated vessels, so of course the added dilation would make you worse. Have you tried antihistamines?

@Jademoon7 it is possible that you ONLY need to increase your salt intake, not electrolytes like Mg, Ca, Potassium etc. You can do so by either 

- salt supplements

- sodium rich foods or drinks ( broth or sodium rich water etc )

- IV fluids of NACL solution

I personally am unable to tolerate salt tablets or too much fluids, I tolerate salty foods ( pickles, pretzels etc ) but cannot tolerate a lot of fluids, I either cannot keep them down ( slow digestion, build up of volume in stomach ) or I pee them all out. So I get IV fluids twice weekly, and it has enormously improved my quality of life!

@Sarah Tee I am happy to hear that you might soon get a specialist near you! And I hope he will be able to help you. 

Also - thank you for your always helpful Input to our forum! 🥰

😄 yay!