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@Sarah Tee Reduced cerebral circulation can be caused by several reasons: it can be that the blood flow to the brain slows due to vaso-constriction, too low BP from vaso-dilation or low blood volume. IV fluids usually help in all of these scenarios, albeit sometimes only temporarily. For me HPOTS causes the blood vessels to constrict and more pressure is needed to pump the blood to the brain. IV fluids help in that by creating an even pressure within the vessels and this reduces the ANS to produce Norepinephrine to constrict. For example: if I go into a crisis with high HR, high BP and tremors it is caused from adrenaline. IV fluids counteract by creating an even pressure which in turn reduces the sympathetic over-compensation and things calm down. If the blood vessels are too dilated ( often in EDS ) then the ANS tries to counteract by increasing HR to pump more blood to the vital organs, and may dump adrenaline to constrict the vessels. IV fluids will help by creating an increase in the pressure within the vessels. And if there is low blood volume of course the ANS will need to increase constriction of the vessels and increase HR and pressure to pump enough to the organs. IV fluids here can help simply by increasing the volume within the vessels.

@Caterpilly I have heard that sooo many times! I even had an EP once tell me ( after he did my second TTT ) he thinks POTS is a fashion diagnosis and because it is so new and the symptoms so vague everyone wants to have it now. Another Doc told me he does not believe in IV fluids for POTS because POTS is a psychological condition. I think that some doctors simply dont want to admit that with dysautonomia they have to rethink everything they learned in med school!

@MaineDoug I am glad everyone was watching out for you, and I hope the new med will finally bring you some improvement!

@KateN I did more research and found this article So https://pubmed.ncbi.nlm.nih.gov/20055263/#:~:text=Pineal cysts usually have no,oculomotor disturbances%2C and obstructive hydrocephalus. Here it mentions this: "Pineal cysts usually have no clinical implications and remain asymptomatic for years. The most common symptoms include headache, vertigo, visual and oculomotor disturbances, and obstructive hydrocephalus." So, IMO the symptoms caused by the cyst can mimic Dysautonomia, since headaches, vertigo and visual disturbances have all been reported in dysautonomias. However, I will have to look into it further to make sure my theory is correct!

@KateN Welcome to the Forum! I have not heard of pineal cysts being connected to dysautonomia, but I would assume that the discomfort from it could cause you enough stress to have a flare-up of symptoms if you already have dysautonomia. There are many factors that can cause us to flare - pain and discomfort are one of them.

@Sarah Tee Good for you for staying the course so far. I took Plaquenil for a year ( 200 mg ) and never had any side effects, luckily, despite being extremely medication sensitive. It is not supposed to really kick in until about three months after you start it, so hopefully ( especially since you started at such a sub-clinical dose ) it will not negatively affect you. Stay the course, you may not realize the benefits for a while!

Hello @Neomorph. I have HPOTS, Raynauds and Prinz metal angina. They are all related according to my cardiologist, because they all are caused by excessive vaso-constriction. The sympathetic overcompensation from HPOTS causes blood vessels to constrict - with Raynaud's in the feet ( I dont have it in the hands ) and with Prinz Metal angina in the heart ( diagnosed by heart cath ). I also used to take seizures when the vessels in the brain suddenly and severely constricted, causing cerebral hypoperfusion. I dont believe it has been proven through studies yet but I know that for a few years now there is a theory about POTS being caused by ( or triggered by ) immune response. They used to think it was auto-immune but now they are leaning more towards the innate immune system. As you may well know, POTS frequently is preceeded by viral infections ( i.e. Long-COVID ). My autonomic specialist as well as my local cardiologist told me years ago that Fludrocortisone is not to be taken with Raynauds syndrome or Prinz metal angina due to it causing vasoconstriction. At least ti is that way in my case because the vaso-constriction causes high BP, and Florinef would worsen that.

Hello @Clorato - welcome to this forum! Yes, I have heard of people becoming more symptomatic on birth control. But I am wondering about the above statement - POTS is usually diagnosed by an increase in HR WITHOUT a drop in BP. I have NCS ( same as vaso-vagal syncope ) as well as HPOTS. With NCS the HR briefly jumps up and then both HR and BP drop rapidly, causing syncope. Does your HR stay elevated when standing, or does it drop after a few minutes? You mention taking benzos to control HR - has your doctor ever prescribed a beta blocker of florinef? These are often prescribed in certain types of POTS, as well as NCS.

@MikeO 😉 Yup! You will stink for a while, but it's all worth it!

@Sarah Tee Here is a wonderful and easy recipe for Hummus: 1 1/2 cups cooked garbanzo beans 1/4 cup lemon juice 1/4 cup tahini 1 clove minced garlic 2 tblsp EVOO 1/2 tsp cumin, salt to taste, dash of paprika 2-3 tblsp water ( I use the liquid the beans were in ) Whip Tahini and lemon juice in Food processor, add EVOO, garlic and spices, add 1/2 cup beans at a time and whip then add more, add water if too thick until desired consistency.

@CharlieJacks POTS - and similar dysautonomias - often are brought following a viral infection ( as Long-COVID, for example ) They used to call it post-exertional malaise.

@MikeO when using dry beans I rinse them over and over and over, and then rinse them after cooking over again. This removes most of the outer skins. Removing them prevents the bloating, too!

@Sarah Tee yes, you are right. However - this can backfire on us, the patients! For example - a few times in the ER I told them I needed IV fluids to stop the syncope and then i could be on my way. They refused. I asked them to call my PCP - they refused ( I assume because THEY are the big ER doc and HE is "only" a PCP ). I begged them to contact my cardiologist and they refused - Stating my symptoms were not serious enough to make a call to the big guy. Another example: I had begged my PCP for a long time to order a port for home infusions to avoid the trips to ER. He was uncomfortable because of the risks involved. My cardiologist agreed that a port would be appropriate in my case. I asked him to order one but he said he could not go against my PCP's opinion. But he DID send my PCP a note mentioning why he felt a port would be good in my case. Not long after that, after another refusal of fluids in the ER, my PCP allowed the port and I have been mostly stable since then.

@CharlieJacks welcome to our forum! The list of symptoms you posted does sound like you may have dysautonomia. All the tests they recommended and the cardiology referral are appropriate but it is usually by Tilt table test ( TTT ) a diagnosis of POTS is confirmed. A PCP can order one but most likely the cardiologist would want it. If your PCP is open to it they might order one so you could get it done prior to your cardiology appointment. You can also ask your PCP to do orthostatic vitals in the office, meaning they take your HR and BP while lying down, sitting up and standing. This you can also do at home if you have a BP cuff. Here is a guide to how to do it https://www.cdc.gov/steadi/pdf/STEADI-Assessment-MeasuringBP-508.pdf It is important that the BP gets taken after you stand up for over a minute and again after 3 minutes of standing. This may be helpful to you

@MikeO I add the chickpeas slowly to the food processor while it is running, and if too thick i add a bit of the liquid the beans were in.

@little_blue_jay I have never heard of someone having a heart attack from POTS alone. Of course someone with POTS CAN have a heart attack, but probably not from the dysautonomia. Since your cardiac enzymes and EKGs were normal you should not get too worried. However - I know how scary and uncomfortable the symptoms are, I too have had a few trips to the ER thinking I was having a heart attack in the beginning of this illness. Since then I am so used to the symptoms that I can definitely tell if it is "just POTS" . Having said that - if you are not sure its always better to get it checked out, like you did.

Amen to that!

@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

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. 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. 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!