Pistol

1 hour ago, Sarah Tee said:

My ankles and toes lost some of their range of motion, and the skin on my ankles got a bit sore and itchy from being stretched even if I avoided flexing them.

@Sarah Tee Are you wearing compression hose? That may help with the edema

@Looking_for_light @Sushi I had several big and also minor surgeries since onset of HPOTS 15 years ago. I had several anesthesia complications occur during these surgeries, including seizures ( I have autonomic seizures from rapid vasoconstriction causing sudden loss of circulation to the brain ) as well as high and low BP. All of these complications were managed well by the anesthesiologists, who ALL were knowledgeable on POTS. This is because the anesthesiologist that did several of my procedures educated herself on it and posted instructions in my chart. Once she did not want to put me under because I was very unstable but needed the surgery, so she did a spinal while I was supine ( usually done sitting upright ) to avoid a sudden drop in BP. She also managed another time when my BP dropped dangerously low by administering appropriate medication. All this was documented, so the other anesthesiologists are aware. It is also noted in my chart to administer IV fluids before and during surgery to prevent complications. 

@Looking_for_light there are several articles online regarding this subject. here is one that is very detailed https://ispub.com/IJA/27/2/13170

@MaineDoug yes, IMO that would be an indication for a port. There are other long term IV access methods also, such as a PICCline that gets inserted into your antecubital ( elbow ) and threads up to the subclavian vein. --- Whenever I needed surgeries that required me to be npo they would always have me come in at 6 am and immediately started fluids, even if the surgery was later in the day. I know knee replacement surgery takes a lot of rehab later, so I wish you the very best. All my friends that had it done were like brand new people afterwards because of the improved activity level and improvement of pain, may it be the same for you! 🙏

3 hours ago, Sarah Tee said:

My theory for a CCB helping me is that is has stopped the blood flow being squeezed off to my head by incorrect vasoconstriction when upright. Is that your thinking too? Do you get cold hands and feet with the weather?

@Sarah Tee Yes, and Yes. Both apply to my case. Since my SNS overcompensates for BP fluctuations I have ( always had ) problems with cold feet ( Raynauds diagnosis ) as well as Prinzmetal angina ( constricted coronary vessels ). Both these diagnoses were confirmed by angiogram and heartcath. The excessive constriction causes me to not have adequate bloodflow to the brain, and the CCB in addition to IV fluids improves this. 

@MaineDoug When compared to how often I ended up in the hospital before the port ( hub ) I am so much better! I have had a port for the past five years and my POTS related hospitalizations since then are three. Compared to every 6-8 weeks before! The surgery is a minimal procedure and you might be slightly sore afterwards. I have a nurse come once a week to change the needle ( this needs to be done in a sterile technique due to the high risk of sepsis ) but I do the infusions myself. Sometimes I need a bag every 2 days and sometimes every 4 days. 

Now, there are risks involved. My doctors, including my wonderful POTS specialist, were very reluctant to let me have a port because of the risks of infection ( the port has a tube that goes right up to your heart, so if it gets infected you could die ) and blood clots. I am on my 5th (!) port in as many years, they are supposed to last 5 years each. Everything that could go wrong wiht one happened to me - the first one was inserted sideways ( boo to the surgeon ), the second one malfunctioned, the third one got infected and I ended up with sepsis and the fourth one clotted off. This is highly unusual though. 

Despite the risks in my case the benefit clearly outweighs the risks. My quality of life would be pretty much nonexistent without the IV fluids since I was bedridden and passed out and even had seizures several times a week. That is dangerous too, so now I am able to have a life. 

What is the reason they are considering one for you? 

@Sarah Tee when my specialist first prescribed diltiazem he chose it because it comes in low doses that can be divided over the day. I started with 1/2 of the lowest dose twice a day ( lowest dose is 30 mg ) and once we saw that I tolerated it he increased the dosage slowly over several months. Once I hit my optimal dose ( 180 mg ) he switched me to the extended release and I only take it once a day. Noteworthy is that in the fall ( september ), when the weather changes, my BP starts to creep up, so I increase the dosage to 240 mg, and I go back to 180 mg when spring comes. The months that I need to change dosage are always the same - September and may. 

@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.

23 minutes ago, MomtoGiuliana said:

The mind body connection can be powerful

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!

4 hours ago, MikeO said:

If you can handle alcohol (grandma's recipe) is a bit of brandy and honey in your tea. 

@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. 

3 hours ago, Asmaa said:

I felt uncomfortable telling the doctor what I needed and apologised for it, but i explained that I am desperate and the quality of my life has been destroyed. And there is so little understanding of this illness that I need to take control of my health to get better.

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.