Ashelton80

What are plasma exchanges and is that a normal treatment for POTS?

Oh and exercise is also important, basically anything that helps your body to reduce insulin.

I thought I had that in my early twenties due to my symptoms, weight gain, dark hair growth and an absence of my cycle for over 1 year. I have no idea if it causes POTS or is just another hormonal cascade that dysautonomia can disrupt. I do think it could be linked or in my cause, once I cleared up the PCOS my POTS symptoms were much better. PCOS can be easily managed through what you eat or don't eat more importantly. Cutting all sugar and all but a few grains (quinoa and brown rice) is almost necessary.

I wish I knew. I know how to warm my hands through biofeedback and breathing techniques, but my feet are always cold. It's obviously a circulation issue.

It is my biggest fear k&ajsmom. My daughter is only 5 and has night terrors. She will wake up drenched in sweat, panicky with her heart racing and she is clearly not awake or lucid. I helped her with one the other night and I just prayed over her that this was nothing to do with POTs or my genetics, etc. My mother has the same symptoms as I do, so I do know that it can run in families. If I were you I would try not to worry and hope this is an isolated event. I think your instinct will tell you if and when it might be Pots related especially if it becomes more frequent. Hoping for the best for your family.

It is the million dollar question isn't it?! I am in the process of making an appointment with Dr. Afrin, but mid February seems to be the first available for a work up. I also was on the phone with my Vanderbilt dr 4 times last week and they still have not called to schedule my appointment. They are so unorganized! Of course all she wants to do is re do the same two tests I've already had. I still can't figure out why Vandy is considered a great hospital. I have not had that experience at all! Dizzy Here is my scenario, if I don't eat right before bed I will wake up around 2-3 am in the morning either having a shaky low blood sugar episode (feels different from last night) or I wake up starving and have to get up and eat in the middle of the night. Sunday night I went to bed hungry and ended up being wide awake from 2 am to 4 am, so normally I eat turkey, flax crackers with hummus and half a peeled apple at 10pm. That will usually get me through the night. Sometimes it's still not enough. I have to have hearty food. Protein with fat is usually the only thing that will take away the hunger pain. I am having a very hard time with food because of my diet being so limited with all these reactions. My OI is usually better when I don't eat much. Obviously thats not going to work! No, unfortunately I don't digest nuts very well and I developed a mild itchy allergic reaction to sunflower seed butter that I was trying to replace my nut butters with! UGHHHH

Last night I cooked italian sausage with cabbage and onion. It was a Paleo recipe and is actually very good. I ate around 4;30 and then had to attend my daughters dance performance at her studio. It was a bit stressful as the entire parking lot was full and people were parking long distances and walking. The whole process did make me a bit anxious as there are a ton of people and kids running around and it is always chaotic and loud! Either way I made it through the performance just fine and drove home after. I was hungry when I got home around 7:30 and at another plate of the italian sausage. I had forgotten to put it away and left it sitting on the counter. I also ate another small plate around 10;30 pm right before I went to bed. I know that's a lot, but I am way underweight and constantly hungry. Especially at night. Went to sleep with no problem, but woke up at 1 am with extreme nausea. I immediately felt shaky and tense and then felt the urge to use the restroom. It was loose stools, but after the nausea went away. My bp spiked to 140/90 and I shook in bed for about 20-30 minutes until my bp returned to 96/65 and I fell asleep. Is this just a POTS thing or is this a MCAS thing? I don't know how to tell the difference! Help!

Congratulations on accomplishing your goal!! I cannot even imagine how difficult college must be dealing with this illness. My severe onset was late 20's so I was well out of college by then. You should be very proud of yourself!!!

Soaking in the ocean for 3 hours a day for 4 days has been the best treatment for hypovolemia for me! LOL Too bad that's unrealistic.

Katybug, I have not tried the MCAS drug therapy yet. You think it sounds like mast cells? I'm not exactly what the protocol is it other than just zyrtec/zantac and what doses? I always hate to experiment without being under dr's orders, but those 2 drugs are OTC and benign so I guess it's worth a shot. With my food intolerances piling up, I am starting to think more and more in that direction. I've also had a few scenarios with dust/mold and ammonia gas that landed me in the ER with crazy high vitals that IV saline really didn't help. Problem is I don't really have any outward signs of autoimmune type illness. No rashes, no hives, no anaphylaxis, normal ana's, etc. I have broken out in hives twice, once over a cat and the other a dog, but that's it. I am definitley hypovolemic but I've heard Mast Cells can be the underlying cause of that as well. Either way, it's terrible to basically become scared to eat!! bebe Not sure how it's tested. Serum tryptase maybe, but I think Dr. Afrin tests a lot of different things. I really wish these doctors weren't on such a long waiting list! 2 months seems like forever when all you want to do is live life. Thanks for both of your responses. Ashley

I see results in less than 2 weeks. Usually once the withdrawal type symptoms disappear I can tell a huge difference right away. I am starting to think that gluten intolerance is just a sign of a much deeper issue. More than likely leaky gut. Normally it's not just gluten that's an issue. Dairy, corn, etc. become apparent once you're out of the gluten fog.

Hey guys, Just wanted to get your opinion on where I go from here. I have been dealing with POTS for about 3 1/2 years. I have not gained normal function back during this time. There was a period last year where I removed gluten and dairy and started exercising and got much better. The best I have felt was after soaking in the ocean down in Florida for 4 days. I woke up feeling like a brand new person. No more head pressure and I had energy for the first time in years. The effects eventually wore off, but it did last longer than i expected. This year has been a tough one. I have removed gluten, dairy, eggs, corn, chocolate and coffee now from my diet. I feel like I am constantly adding new foods to the list. It definitely helps, but obviously I worry that more and more foods will just continue to be added due to intolerance. I weigh 110 lbs and am 5'8 so I don't have a lot of room as I am underweight as a result of POTS. I exercise, but constantly feeling as if I am always starting over with exercise. It definitely stabilizes me and helps, but it just seems like the food. I need to keep adding more and more to get the same effect. I actually sleep pretty well and always try to be in bed asleep by 10 pm. I juice carrots, drink green drinks and take vitamin d. I never eat processed food or sugar. I try to practice biofeedback several times a week as I am one of the people that spent 2 weeks in Dallas learning how. I was also one that didn't get dramatic results. It's frustrating to see all these people and the videos that say they have their life back. I just don't get it. I feel like I do everything right, yet I still barely function. I have called my doctor at Vanderbilt that I haven't seen in two years. I know she will throw some sort of medication at me. I also emailed Dr. Afrin last week and told him my symptoms and story. He told me I sounded like a classic MCAS case. Of course he doesn't have an appointment opening until mid February. I also have an intergrated medical dr appointment mid January. All that to say, is I am confused at which directions to travel. Traditional MD with normal meds for POTS or Integrated/Alternative. The lifestyle stuff just isn't cutting it anymore!!!!

Yes, thanks for posting Jangle. That's exactly what I experience. After exercise my tachycardia is much worse, but I can usually walk around feeling ok. Other times my heartrates are 85 standing, but I feel faint and like I'm being squeezed all over. At that point, my bp is up around 135/95 obviously high. I don't understand any of it.

malabsorption and doctors usually prescribe the synthetic form of D2. should be taking D3.

Gluten, dairy, eggs, corn free. Helps me with energy, brain fog, depression, etc. I feel more calm and my POTS symptoms are better. I had a free for all no restrictions diet in July for a month, it took 2 weeks to start showing its effects, but it wasn't pleasant after that. Then I went cold turkey on the things I mentioned and had really bad withdrawal symptoms for 4 days. After that though, it was as if I could see clearly again.

Yes, when I've pushed myself too hard I get these. They are terrible. I use the breathing I was taught at the biofeedback center in TX and it helps to shorten these episodes. A few years ago I would keep a sliver of Xanax on my nightstand and when I woke up doing that I would take it. It doesn't happen very often now, especially when I'm consistent with my exercise. That seems to keep them under control some.

Yes, but once I started taking a vitamin D supplement my immune system seems stronger than both my husband and daughter. They rarely get sick, but I have with stood a stomach virus and a cold that they both had and I was the only one who didn't get sick. I also eat no processed food and lots of fresh fruits and vegetables so that makes a big difference. You can do common sense things like wash your hands and clean, but the immune system works from the inside out, not the outside in.

NO WAY. This is what I do. I started taking Vitamin D in September. My immune system used to be so weak and terrible. Since then, my daughter and husband both had the stomach virus, didn't get it. Also for the past 4 days my daughter has coughed repeatedly in my face and I have no signs of the upper respiratory stuff she has. It's been amazing. Plus, do some research on the connection between 5 years plus in a row taking a flu shot increases your risk of Alzheimer's by 80%. The effectiveness of the shots are also questionable not even mentioning the toxic ingredients found in them. http://articles.mercola.com/sites/articles/archive/2011/12/14/study-shows-vitamin-d-cuts-flu-by-nearly-50.aspx

Yes Vitamin D is crucial. Also, getting rid of food intolerances was huge for me. Gluten being the main offender causing major depression for me. Eating lots of protein and no processed foods. Read labels, for example I drink Whole Foods brand broth for salt. They changed their packaging and added yeast extract to the formula. I looked it up to make sure it was gluten free and it was. 2 weeks of drinking it and I knew something was wrong by the way I was feeling. Come to find out yeast extract is another name for MSG. All that to say is what you put in your body or don't put in your body can make a huge difference on your mental health. Exercising so I am able to participate more in life will also help lift me out of a funk. Other than that it can still be a daily battle living with an illness that has been chronic.

I had two episodes like this on Saturday. A lot of mine usually has to do with not being diligent with my salt and fluid loading for several days. BUT the two days prior were very emotionally draining and busy and the day of the two episodes I was traveling to visit my family. It was the first time I had been back since my grandmother suddenly passed in the spring. On the drive there I was already in tears and dealing with some leftover grief that was triggered by the drive there. Lots of memories on the way. So usually I can pinpoint a few things that will trigger a panic/potsy attack. I feel your pain. They are so miserable, but I will eat salt and chug a bottle of water and tell myself it usually doesn't last long. Within 25 minutes I'm back to being perfectly normal again.

Sorry kds, but I have found the exact opposite to be quite true in my case. Where are you getting information? I'll take any improvement even if it's temporary. The Majority of drugs prescribed for Pots carry a much heavier risk IMO.

Yes! TCP that is exactly it! I'm impressed you know that. The spinal column has direct correlation with the Central Nervous System. Years ago when I first started getting adjusted by a chiro regularly I started to notice that I wasn't getting sick with common ailments like colds, fevers, flus, sines infections, etc. things that had plagued me since I was a teenager. So it's not just "cracking" your bones to reduce pain. Although that can be quite nice, there is much more to it. So just a flow up since my AO atlas adjustment. I felt pretty good for several days after. Less pain makes me more energetic overall and my heart rates seem less irritable. I also started wearing my compression stockings so that has been quite helpful as well. BUT, I can already tell I need to go back. I have that pulling and pain that starts in my lower neck and radiated through my right shoulder blade and then down into my right hip. I can also look at myself in the mirror and see that my right hip is higher than my left and my left shoulder is wayyyy higher than my right. Try it, it's actually pretty cool to purposely look and see if you're even or not. Anyway I haven't felt as good today and my heart rates and energy haven't been as stable either. So for one adjustment I got 4 improved days. A tad frustrating, but I'll go back.

LMG, no its not a rotary adjustment. It's a very precise atlas adjustment by a machine. The part that makes contact looks like a skinny ink pen. Sometimes I don't even feel it and I am amazed at how effective it is without me even feeling much. They can be a bit hard to find depending on what part of the country you're in.

So I thought I would share before I forget. Yesterday I went to get my atlas adjusted by an AO chiropractor. I hadn't been in months and I could just tell it was starting to get bad. I had begun to want to sleep until 10:00 am and when I would wake my head felt like it weighed a ton. When standing I had lots of pain and pressure in my head. Felt like it would explode. So post adjustment today, I woke and got up at 7:30 am with no heaviness in my head. After several hours today Overall feel more calm and much less pressure and pain in my head. This isn't just an oh it's coincidence type of thing, I have been doing pattern for almost 2 years. It's not perfect, but it's definitely helpful.

A fifteen year old girl just finished at the Pots Treatment Center in Dallas and one of her main complaints were pseudo seizures. She is reporting almost 100 percent recovery. I've not always been the biggest cheerleader of that place since I didn't get a lot of improvement from my treatment there, but there is obviously something to it. It seems the young teens get the most rapid and complete symptom reduction. Worth looking into.