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@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.

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.

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.

@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?

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!

@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?

@Sarah Tee so you have COIwNHRBP? 😉