Pistol

@Sarah Tee I am on a CCB for HPOTS and my autonomic specialist was the one who first prescribed it, many years ago. I know you dont have POTS due to your HR not being elevated, but the principle is the same. Even today doctors that are not familiar with my case tell me if I would stop the CCB I would not need IV fluids. Haha, the days I forget to take it I am horribly ill! ---- As to how to address the doctor to diplomatically "rub it in" ... I have no clue! I have tried in the past to go back and explain to them why their approach or suggestion to my treatment was wrong but it never ended good. Even if it is perfectly worded most docs become very defensive when their ego gets bruised. THEY went to med school and THEY know what to do, WE just need to submissively be thankful for their time. Lol.

Hello @Sarah Tee - I am allergic to silicone and adhesive tape so they use a barrier wipe for me. Here in the US it is called skin prep, or adhesive barrier wipe. It comes in sptay or wipe. Here is the list of ingredients: Purified Water, Diglycol, Glycerin , Sorbitol , Octoxynol- 9 , Dimethycone Copolyol , Diazolidinyl Urea , Methyparaben

@kmichaelson So sorry to hear you are feeling poorly again, and BOOOO to your doctor! --- I have an infusion port and get bi-weekly IV fluids, which have greatly improved my symptoms. But before the port my doctor gave me a standing order for 1-2 liters of LR weekly as needed. Whenever I needed them I would go to an infusion center, urgent care center or outpatient surgery and they started and IV and infused the fluids. They always normalize my BP and HR ( whether high or low ) and instantly give me energy. I am wishing you the best of luck, hang in there!

@Knellie there are a few docs in Florida listed on our physicians list.

@Derek1987 I am, so sorry you are going through this! When I went through this my doc would put me in the hospital on IV fluids and lorazepam. Ususally that would fix it and I could go home the next day. Any idea what triggered it? Complete rest and withdrawing from any stimuli is important.

@VerdantPikmin I get this ringing when I get up too fast from bending pver or when I am close to passing out. It is said to come from nor enough cerebral circulation. IV fluids have helped me greatly with this symptoms.

Yes, and I find that with dysautonomia the WHOLE Being is challenged, body - mind - and spirit. And we are so misunderstood that it is more challenging than an illness that can be explained. If that makes sense.

@MikeO what the heck, I thought you were over this? I am so sorry, you have been doing such a good job. Dont let it slow you down, just a bump in the road. But PLEASE try to be careful, a lot of people love you. Even when you are unconscious. ( This comes from a fellow passer-outer ). Insider joke.

@Sarah Tee that IS an achievement! I remember once I had a good day and moved all my bedroom furniture to one side of the room so I could shampoo the carpet. Well, once I got done moving it I was so worn out that I had to rest for three days in the rearranged bedroom before I could start shampooing ...

@MikeO you are too much! Welcome to the fam!

@MikeO my german mom always swore bu fresh squeezed lemon juice, honey and vodka. Then she would tuck us into bed with tons of covers, let us sleep and sweat it out. ( Not recommended for everyone ).

Hello @Neomorph I have HPOTS and cannot take decongestants. So for allergies I take claritin or flonase nasal spray. And for colds I stick to mucinex, the simple kind. It makes your secretions looser so it is easier to expectorate or blow your nose. And rest and hydration.

@Nin I take autonomic ( also called hypoxic ) seizures, especially during or right after anesthesia! Mine were diagnosed during a stay at an EMU when I was hooked up to EEG and telemetry and had an event. They are thought to happen when my vessels constrict, therefore not allowing adequate blood flow to the brain. Medications, a slow lifestyle and frequent IV fluids have stopped them for the most part. There are certain precautions the anesthesiologists take now, including IV fluids before and during surgery.

Dont apologize, you did an awesome job! When I first became symptomatic noone ever even had heard of POTS ( they spelled it pott's disease 😂 ). I went online and typed in tachycardia and high bP and slowly but surely I found what ailed me. I printed out articles and took them to my wonderful GP. He said " looks like we know what you have but I dont know how to fix you! ". He referred me to the autonomic specialist I wanted to see and while waiting over a year I saw - and fired - 4 cardiologists of various degrees of ignorance and dismissal. When I saw the specialist he not only confirmed my diagnosis but over the years helped me find the right treatments. ( This part can get tricky because it takes a lot of trial and error ). All I can say is that you are doing exactly what you need to do right now. Hang in there, there are so many people here that were in your shoes and we all made it. So can you!

@gertie I hear you, I also suffer from the summer heat! I have often cancelled appointments last minute because I just could not get there. Now I get twice weekly IV fluids and schedule them around my appointments, so I get one the day before. It helps a lot, but I also understand that this is not available for everyone. Make sure you hydrate extra good that morning and the day before, and try to rest to preserve your energy the day before.

@albertspa I dont have any explanations but I too have HPOTS and I also feel better during rainy days and when summer turns into fall. I always contributed it to barometric pressure.

@erinlia POTS runs in the females of three generations in my family. My daughter ( now 18 ) developed symptoms when she was ten. She often complained about dizziness, she would come and ask me to check her racing pulse, and she would pass out in certain situations ( standing in line was a big one ). I had taken her to a pediatric cardiologist, making sure he was aware of my family history. He did an upright EKG and said a;; was normal. They also did a heart monitor, which did show tachycardia, but they dismissed that, although often the tachycardia was when she was just standing. My autonomic specialist told me that her symptoms do sound like POTS, so she simply drinks a lot and knows to sit down when her heart races. So far she has managed just fine.

@Sea otter yes, the subtype makes no difference in symptoms but it CAN make a big difference in treatment. For example - hyperadrenergic POTS causes symptoms due to excessive vasoconstriction. Neuropathic POTS, or for example POTS caused from EDS, cause symptoms due to excessive vasodilation. Therefore the medications to treat the symptoms would have to be different - I take calcium channel blockers and alpha&beta blockers, which would make neuropathic POTS worse. And Midodrine or Florinef would badly affect me but be very helpful to someone else. So, in my experience subtypes do matter in certain cases. Problem is many physicians are not aware of the subtypes.

Yes, he did. I had been seeing a rheumatologist for the joint pains but he said there was no sign of auto-immune problems. My specialist explained that plaquenil has helped many of his POTS patients, and at that time they were just exploring the Innate immune system connection to POTS. He prescribed it for POTS but it was not covered for that by my insurance, so I pay for it myself. After a few months the joint pains were gone! Although I am sero-negative ( only elevated lab is ESR ) I do see a correlation between inflammation and my symptoms. I was told that most rheumos only look at the auto-immune system, not the innate immunity. This would be lymphocytes and our first response to invading germs. Read more here https://www.ncbi.nlm.nih.gov/books/NBK279396/#:~:text=The innate immune system is,the "nonspecific" immune system.

Yes, I had to take it for many weeks before I could tell a difference. Beware that it can cause problems wiht your vision, and you should have a special eye exam before you start the medication as well as annually.

We are also glad you are here! Although it would be better if you did not have to be ....

@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!