Godsgal

Praying too!

Not sure if it will answer any questions but reading the actual study by Dr. Levine is pretty interesting and explains how exercise helps. It's at potsrecovery.com on the top right for the link.

Hello....I think the TTT is THE diagnostic tool for POTS. The autonomic testing would include this as well but you usually have to wait to get in for the autonomic testing. For people with POTS, the best exercise is done sitting. If you want to exercise maybe a recumbent bike or rowing machine. Due to the blood pooling, prescription grade compressions would likely greatly help you. I wear them and I feel great with them on. I'm 5'1" too. Wow you are tiny! I'm 103 and people give me a hard time over being too skinny! Do you have trouble tolerating many foods? I know you mentioned the vomiting. Do you have any flushing? And no beta blocker for the heart rate? I would definitely try to find an EP (electrophysiologist) that is very familiar with POTS so you can get help. You asked specifically what to do. Get the tilt table test. Drink tons of water/gatorade/broth and increase your salt. Avoid exercise standing. Get the compressions. Don't take hot showers. Check the home page of this forum and review the list that shows what to avoid. Get your PCP or cardiologist to order the tilt table test but it does need to be with someone that knows what POTS is. Check the doctor list on here as well. Hang in there! Keep searching for answers and don't work yourself too hard around the house or exercising! Take care of yourself and welcome to the forum! Feel free to ask any questions anytime

I get hives. Mine have gotten much better since I started the histamine free diet. Definitely read the article Sarah4 mentioned for you. As she said go to TMSforacure.org and look at the symptoms. Very enlightening. I have actually got unexplained hives for years, come and go, since I was a child. I definitely think you should try to have some blood work done for your tryptase level and whether it's normal or not try to get the 24 hour methylhistamine urine test.

I take mine 3 times a day and if I start the day late, I usually don't take the last one. I don't lay down on this. I did try to sleep once sitting up and my heart did the craziest things! Never again will I do that!

Hang in there and get that attorney! I read on tips to getting approved that you should continue going to your doctors during the process and ask your doctors to document the reasons why you can not do a job even if sitting. I called one and he gave me some nice tips as well and told me to call him if I get denied. Perhaps one near you could give you some answers and make you feel better about all this. Hang in there, Jared

Hello forum family.....I'm feeling down today. I had been doing pretty well for a couple months. Light cooking, light housecleaning, all done sitting of course. Not really driving or walking around much. I still use a wheelchair in public. Every since Saturday I have been having episodes. Saturday and Sunday it was extreme sudden hot with feelings like I'm gonna pass out. Yesterday my live in nanny was cooking with cayenne pepper and I started getting burning in my throat, eyes, 130's hr, feeling faint. Today I am so nauseated I can't get out of bed. And I feel hot all over again, especially my face. I just don't get it. I'm so thankful for how far I have come. I just want to know why the sudden setbacks. What did I do wrong? I was cheating for a week on my histamine free diet for my testing and then the weather turned hot down here in south florida and I'm not functioning as well. I did take a coated aspirin last night and I'm wondering if the dye in it caused me a problem. I also ate applesauce which I'm not sure....may have histamines b/c it's cooked. I don't know. I know I have talked to several about the MCAD meds. I started taking a claritin for this several days ago and also Pepcid this morning. I'm on a beta blocker which obviously isn't good if I have MCAD but my cardio wants more testing done first to prove I have it. Thanks for listening to the rant. Jared

Good morning.....I'm 29 also and I live in South Florida. Absolutely miserably sick right now so doing my best to help. I have some major brain fog too so forgive me when I ask what is the m/e acronym mean? I just got diagnosed with POTS/dysautonomia in January. It's quite the journey isn't it? Let me say welcome and you will find lots of support, help, and info on this site from people that genuinely care. You are very blessed to have that doctor of yours over there who is getting you set up with the TTT/autonomic testing. That's hard to find sometimes. He is wrong though on the sitting. You can have symptoms sitting, laying, standing, bathing, sleeping, etc. What you can do to help yourself in the meantime is drink lots of fluid and take in lots of salt. You asked how much? As much as you can tolerate considering that 5-10 teaspoons is what the Mayo Clinic expert on POTS told me. A lot of people get salt from broth, tomato juice, etc. Avoid hot showers, the heat, standing much....there is a great list on the home page of this forum about what to avoid. Some people have difficulty with certain foods so keep that in mind. It would be great for you to avoid junk food, caffeine, fatty foods, lots of carbs. Fresh lean meats, fruits & veggies are definitely the key and eat more often in small meals. The compression hose that will help you are medically prescribed...see if your doctor can set you up with those. Make sure you take them off at night. No one told me that in the beginning and I wore mine for days as I was bedridden and too sick to think straight. You mention hyperventilation syndrome. I know that some people with POTS have breathing difficulties, shortness of breath, some hyperventilation. I get episodes myself and I notice that they are in relation to certain triggers (being hot, certain foods, too much physical activity). What exactly are your breathing issues and when do you get them? Also, in your list of symptoms do you have any flushing? Sorry to hear you have this but the great news that I hold on to is that a lot of people get better and learn how to manage their symptoms. It also helps to find out what is the underlying cause for this. Hang in there and know there is a large online support group here to help you. May God be with you and all of us. Feel free to ask all the questions you have! We're all here to help each other. Jared (I'm a female just in case you were wondering. This name! Sometimes people think I'm a man)

Are you scared to take the anti-histamines? I started and so did my friend Jenny and we are both feeling a lot better.

Hello....I have probable MCAD at this point and I was on Florinef for a while. Wow....I was so orthostatic on that drug. I thought it helped me for a while but then it was really making me go too high. And I would get low on it too but the highs were WAY too high and I thought I was dying on that stuff. So glad I'm not on it anymore! Perhaps lots of salt and water could do the trick if you decided to get off of it. That has worked for me. Let us know how Dr. Grubb goes! Sorry you had to go through the surgery but so glad you are recovering now. Jared

Hi there....I would definitely exercise sitting. I know that is what Dr. Levine's protocol says. Sitting while exercising will prevent blood from pooling in your feet. I do have the heart racing feeling, sometimes from adrenaline and sometimes it's actually going that fast. I try to take note of what I ate or did that set me off when that happens.

Hey Lieze.....I started taking a Claritin and it has been helping me some. I got on another forum for mast cell disorders and I'm learning a lot. I think you would get a lot of support and information over there (mast cell disorders forum). I'm thinking I'm just going to need to see an expert in this field. Are you able to go see some of the mast cell specialist doctors? I heard of one in North Carolina at Duke and of course the ones in Boston.

Julie.....does this really sound like MCAD to you? All I know is I get sudden heat all of a sudden like I'm gonna pass out. Crazy. I have cheated on the diet a little lately. I only take claritin right now. I just got the prostaglandin test done and I was seriously cheating on it (by eating tomatoes & chocolate almond milk) so if I was sick with this it would hopefully show up. I haven't gotten any more meds yet. And I think the daily aspirin I take isn't helping.

Hi everyone.....hoping someone can help me figure this out!!! I'm in South Florida and the weather has turned hot here recently. Ever since yesterday a.m. I'm getting this sudden feeling of heat along with all the POTS symptoms, heart feeling funny, feeling like I'm gonna pass out, extreme thirst and I feel just extremely hot! It's awful! I also get sudden stomach upset. Yesterday it happened at a garage sale, then later in my garage (where it was hot), and again this morning in my closet as I was searching for clothes. I was kind of active all three times, digging looking for things, etc. and getting my heart rate up. I have been doing really well. What gives with these sudden feelings of heat?????? I'm scared half to death because this is what happened to me for a month or so before a major sequence of hospitalizations and ER visits along with being bedridden for a while. PLEASE someone help me out! Is this a mast cell thing or a POTS thing??? And why is it happening all of a sudden?!? Even sitting here I'm all shaky and extremely warm feeling recovering from this episode.

A good POTS friend of mine told me she walks around a little bit when she get's those and it seems to help me too. Claritin helps me too if it's related to some type of food. I know that sounds silly to suggest Claritin but my MCAD type responses feel better with that.

So I had an episode this morning, one very similar to when I initially was hospitalized for 5 days with the start of all this mess. I noticed lately that position changes have been making me more dizzy than before (standing up suddenly, bending over to pick something up, etc.) and I'm starting to get the tunnel vision again too (which I had before starting meds). I have had a lot of congestion lately with runny nose and ears popping from it. I have been cheating on my histamine free diet, partly because it's fun and partly because I'm getting some additional testing regarding MCAD done. SO....I had been getting dizzy like the room is moving and I take my blood pressure and it's fine. First question, does it makes sense that this dizziness is from assumed fluid in my ears from all the congestion? Continuing on, last night my husband gave me a sip of chocolate milk accidentally and I'm allergic to dairy not to mention I have some kind of MCAD weird responses to foods. I started twitching and feeling crazy but it dissipated and I went to bed. This morning, like an idiot, I decide to cheat on my diet and have some chocolate almond milk. That stuff is so good! I noticed I was dizzy again this morning when standing up and my ears pop when I swallow so I have assumed it's all from allergies/congestion. After that, I went out to drive to a garage sale for the first time by myself in months! I was sitting digging through boxes, trying to get up slowly, etc. and all of a sudden I got really hot. I looked up and the sun was beaming down on me. I'm in South Florida and it's supposed to be quite a hot day today. Really quickly started deescalating. Heart felt funny, impending sense of doom, feeling like I'm gonna pass out, really thirsty, hot, all that. I drive home (barely) and my hands and leg were shaking. I haven't felt that awful in a while. For an hour or so after that, my body temp could not get regulated. I'm sweating, I have goose bumps because I'm cold, back and forth with that, along with muscles shaking. Very thirsty. I ate sea salt and chugged 16 oz. of water. A few minutes later, a good POTS friend of mine told me to take a claritin. It has been about 2 hours since the episode and I'm feeling more stable, miserable and tired, but stable. I have no idea what that was about! Was it the heat? Was it a POTS thing? An MCAD thing with the stinkin' chocolate almond or cow's milk plus the heat? I was only in the heat for 10 minutes but I was crouching down, bending over, etc. Any thoughts?

Lately, I spend so much time researching forums, googling this stuff, and trying to find the answers. I want to get on a mast cell disease type forum so maybe one of those junkies can teach me something. I'm not ever giving up on this. I know I can feel the way I felt before. I do my best and leave the rest up to God. I wouldn't have cared if you left my username though. Nobody knows who I am on here. Although I still feel uncomfortable talking about the really embarrassing stuff associated with this condition (bathroom stuff, sex, etc).

I was researching MCAD, diet, histamines, etc. and was reading through forums. When I read that, it started sounding familiar and then you mentioned my name specifically.

Hey! I was just surfing the web and saw your rant on the mdjunction website....damsel in distress. You had me laughing with that one!!! Glad you found an allergist to help you though! I know the diet bites and all this stuff is such a mess but I'm thinking about you and praying you get better soon I will tell you I haven't found a doctor yet that knows about histamine intolerance. But then again, they don't know about pots or dysautonomia either do they?

I would definitely check into those allergy shots. I will tell you several people I know eat a couple of tablespoons of raw locally grown honey and that is supposed to help with environmental allergies. It's only honey and it tastes good. Worth a shot. I know your situation is complex and this condition we all have is crazy. Glad you are getting some help with this allergist.

Hello, I researched the best doctors for each field in my area and I saw them all. Rheumatology, Immunology/Allergy, Oncology/Hematology, Cardiology, Electrophysiology, neurology, etc. One after one, I gathered a medical book from each doctor with their notes and labs and took all of that info to the Mayo Clinic. That was really helpful for me and the doctors to have all of their information plus the labwork I have had done. I looked up the causes of POTS/dysautonomia and pursued it with all the doctors within their specialty. I feel like I'm pretty close to having answers. Most importantly, I pray that I get better and I have faith that I will. And at this point, I am getting better and I'm thankful for that!

yep....if my heart rate is in the 60's...I think I'm dying over here! Which is absolutely silly I know, but I'm used to it being 90's resting.

I like to wear the compressions that come under my knee....when I wore the ones that were higher the top of my leg hurt too. It's not normal to feel pain when you wear them because that means they are turning into a tourniquet instead of compressions. I bought prescription grade ones that are toe-less and they look a lot better. Maybe black with flip flops wouldn't look so bad.

Hi....I was having several of these a minute around 3 times a day. They are awful and I can empathize. I stopped eating peanut butter and they have stopped. All I know is it's not worth it to eat it and have those! I have a lot of problems eating certain foods. Check out this link and it will show you how the release of adrenaline is linked to high amounts of histamine in your body. http://www.histamine-intolerance.info/ Perhaps you could go on a lower histamine or restricted histamine diet (http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm) and that might help? Anything's worth a shot.

I take Midodrine also. I'm not sure about this medicine either. Sometimes I feel like the numbness I get, goose bumps, and tingling is all from it. I will tell you I was having terrible adrenaline surges and I took peanut butter out of my diet and they went away. Do you have any flushing?