Pistol

@Sarah Tee I was prescribed plaquenil by Dr Grubb. At that time they were trying to do a study on dysautonomia caused by innate immune system problems. Sadly these studies were halted by COVID. I took it for over a year but then stopped it because I did not see a huge benefit from it. I had to pay for it myself because it is not approved for use in POTS. 

I LOVE thsi idea! 

@Sarah Tee I spent christmas in Australia over 30 years ago and remember all the people having barbecues on the beach in their shorts! Very odd to us here, where it is winter, not summer like for you! I remember on christmas eve a huge kimono dragon stole a half cooked steak from someones grill! 

MMMMMMMMM! Yummmmmmmmmmyy!

@Eport Welcome to the forum! What you describe sounds typical for autonomic dysfunction. Normally after a meal the parasympathetic NS kicks in ( rest-and-digest phase ) and most of the blood goes to the gut for digestion. That can result in sleepyness ( food coma ) and cold hands and feet. However, sometimes there is an almost competition-like overcompensation of the sympathetic NS, which is the Fight-and-Flight response. This can occur when the branches of the ANS are not in sync. 

I used to have similar problems as you describe after eating. I have been able to control them by avoiding large meals, carbs and sugar and replacing them with high-protein diet. I also eat six to seven times a day rather than three meals a day. This regime has worked very well for me. 

Here is an article describing the ANS:    https://my.clevelandclinic.org/health/body/23262-sympathetic-nervous-system-sns-fight-or-flight

22 hours ago, Amyschi said:

Can you refresh me as to what meds you are on for the hyperPOTS?

I have tried many, many meds over the years but what works for me is Carvelidol ( beta blocker ) and Diltiazem ( calcium channel blocker ) and Lorazepam as needed. 

22 hours ago, Amyschi said:

waking up every early morning with internal shaking, tachycardia, and extreme anxiety? 

Yes, I used to get this but since I am disabled and can live within my limitations every day ( and am stabilized on meds ) I rarely have to endure this most scary symptom.  I used to get this symptom a lot when overstimulated, and if I was not able to lie down immediately ( like at work or in a store etc ) it would lead to seizures and syncope. Often! That is why I am disabled. 

I was told that this happens when there is a sudden surge of norepinephrine and it is similar to going into shock. When we wake up there is a dump of norepinephrine that occurs with everyone, but with HPOTS there is too much being dumped. 

22 hours ago, Amyschi said:

Also wondering what your levels have been, and if you ever retest it?

Back in 2012 I was tested during my first visit to the autonomic specialist and my levels were over 600 at rest and close to 1000 active. 

@Amyschi My symptoms are similar to yours - I have severe GERD that once caused esophagitis and ulcers. This was treated by meds and maintained with the pantoprazole. I also have IBS-D and off-and-on gastroparesis ( this sounds strange but this is what my GI specialist told me ). 

My symptoms are directly related to the HPOTS and the constant stress caused by the high norepinephrine levels is to blame. Other than meds I manage it by rest ( I am disabled ), eating all throughout the day rather than meals and dietary restrictions ( low carb, high protein, avoiding acids and eating cooked or steamed veggies. )

@MaineDoug I am so sorry for the losses you will be facing! I know how heartwrenching it is to loose people and animals you love! 

I have had HPOTS for a long time and can honestly tell you that - for me - grief does trigger symptoms. The emotions that we go through when grieving are so stressful that flares are typical. I have had many losses and with each I became ill. The depression that comes with grief also made me less active, and less activity means worse symptoms. 

What helps me dealing with grief is rest, talking about my feelings and allowing myself to weep. However, I try not to do this for too long but instead I try to also do things that are positive, like watching a comedy or listening to happy music. It does not take the pain away but it is a reminder that this too shall pass. 

Sending you good vibes! 

@Amyschi I have HPOTS with severe GI issues and have been on Pantoprazole for many years. Despite being hyper medication sensitive I tolerate it very well and never had noticeable side effects. 

I seriously believe that they tell us to go to ER simply so they cannot be sued. As long as they pushed us off to someone else they are covered. 

@MaineDoug sorry that happened to you but ... 🤣

@MaineDoug I am sorry! Just remember that next christmas, after your successful hip replacement, you will get there in much better condition! I am spending my first Christmas all by myself and the high light will be face-timing with my family overseas. And I am planning on taking a stroll through town looking christmas morning looking at all the decorations and imagining all the festivities going on behind the windows!

@Amyschi I dont feel like eating when symptomatic or in a flare. To me it always feels like I dont have the energy to eat - like if I have to even get something out of the fridge it's too much for me. When my daughter was young this was a problem because I had to make meals but could not sit at the table with my family because I was too exhausted. 

@Sea otter If it is any consolation - you are not alone. Before I got a port and now am stabilized on twice weekly infusions at home I had many, many ER trips due to high BP and HR, passing out and having seizures ( proven to be from cerebral hypoxia from not enough blood flow to the brain ). A few times my PCP even sent me to the ER from HIS OFFICE! The ER docs all knew me and belittled all my symptoms. I got the eye rolls many times. Once the doc told me they are too busy to babysit me. Another time my PCP admitted me to the hospital from his office to receive IV fluids overnight and the hospitalist refused IV fluids because - wait for it - I was able to drink. After that my PCP ordered the port and the ER trips are history. 

Unfortunately most ER docs dont feel responsible for treating a chronic condition, especially not one that they cannot see, like in symptoms or numbers or abnormal labs. I do agree with what others have mentioned - a letter from your PCP might help. 

@Sarah Tee does it say urine-MCS? That could be the urine test they do to check for mast cells. 

10 hours ago, MaineDoug said:

Best news at my end, I’ve got a surgical date for my Total Hip, March 18! Can’t wait!

Wonderful! My friend just had her hip replaced by robotic surgery and does GREAT! I so hope all will go well for you. Hang in there until then!

11 hours ago, molleke1402 said:

With me it feels like someone squizes my eyeballs and my vision gets blurry for a short but frightning moment.I have it sometimes when i get up from sitting a while like when i step out of the car but i also have it out of the blue.

Hi, welcome to our forum! - What you describe happens to me often. I have HPOTS as well as neuro-cardiogenic syncope. The squeezing eyeballs and blurry vision when getting up is caused by blood not reaching the brain fast enough when changing positions, in other words blood pooling in the lower body. It is a form of pre-syncope. The best way to avoid this sensation is by deliberately taking deep breaths and standing up SLOWLY. What also helps is right before you stand up move your feet toes-up and tip-toe a few times, ( only the toes touch the ground then only the heels, do this about five to ten times ). This will activate blood flow UP the legs. 

@Sarah Tee I was on Plaquenil for a year, ordered by my autonomic specialist. I tolerated it well but decided to see if there is a difference when I dont take it and there was none, so I stopped it. Funny thing is that while I was on it I developed autoimmune vasculitis following a bad COVID infection and sepsis. It did not seem to do anything for the autoimmune problems. 

And yes, you are right - Plaquenil does not start to take effect until you take it for at least three month. Make sure you get an eye exam before starting it because it can cause blindness and they need to check your eyes every year for this. 

@Neomorph there are specific blood tests for autoimmune diseases. Sjorgens gets tested by blood tests as well as testing how much tears you produce. Lupus is a blood test - there are antibodies they can check. If you suspect any autoimmune diseases you should see a rheumatologist - they know what blood tests to look at in addition to what a PCP would look at ( not just  ESR, ANA etc.). 

19 hours ago, Machair said:

Thank you so much for the replies. Pistol I really understand what you are saying it is horrid though isn’t it?

Have you found anything that helps to prevent attacks?

Well, not really except I try to avoid overstimulation. I am disabled and live a quite sedentary lifestyle, but we cannot live without stimulation or we might as well just never get out of bed, lol. So I just expect a flare as the price of willingly actually DOING something. I rest the day before an activity and for a few days after. So, a trip to the mall with my daughter would take me about four days to "digest". 

@Amyschi in my case it is any of these symptoms: inability to remain upright without significant symptoms like tachycardia, brainfog, syncope or pre-syncope, hypertension. 

https://www.standinguptopots.org/resources/iv-saline

https://pubmed.ncbi.nlm.nih.gov/28185102/

@Machair I have HPOTS and this used to happen to me when I would be overstimulated. For example once I went for a horseback ride ( not a very strenous activity and I am comfortable around horses ). But I was so looking forward to it that my sympathetic NS kicked in overdrive, resulting in pounding heart, excitement and - yes - a trip to the bathroom every two minutes. This is all part of norepinephrine dumping, which is part of our illness. 

19 hours ago, Sarah Tee said:

I am going to have to write out for him what to put on the test order. I should get a percentage of his pay cheque!

@Sarah Tee - both my PCP and my Cardiologist actually go along with any tests or meds I mention ( within reason ). If a new med comes along and I present them with studies or explanation why I think it might be helpful to me they order it. This is how we found my current well-working regimen. It is so important to find a physician that understands US, even if he does not understand our illness. My cardiologist ( I was his first dysautonomia patient years ago, and he has informed himself about it and now sees many dysautonomia patients ) already called me a few times asking questions. THAT is a good doctor!

@Sarah Tee Always make a list of questions. I have a running sheet that I jot down anything that comes in mind and then write it up neatly before the appointment. Once my sister from Germany flew in to see Dr Grubb. We made an extensive list of symptoms, readings and questions. Her english is not so good, so my husband ( who is familiar with dysautonomia since I have it ) came along to translate. They handed him the list and hDr Grubb went through it item for item. At the end she left knowing that all her questions were addressed, although not all of them could be answered. 

I have NCS and HPOTS, both vague descriptions of what is going on, both are dysautonomias. I think why they came up with these names is because they had to find some symptoms to differentiate this syndrome from others. So POTS has most symptoms of other dysautonomias but can be differentiated by the increase of HR upon standing. So they called it that. NCS ( neuro-cardiogenic syncope ) is named this after testing concluded that the heart is structurally sound, there is no arrhythmia or other underlying cause for the syncope and it has been proven ( usually by TTT ) that there is a sudden drop in BP and HR upon being upright, leading to pre-syncope or syncope. So they call it that - and in my case it is a blessing because whenever I pass out they know what it is and they dont have to do myriads of tests.