Godsgal

I have had hives like that a million times. Not sure I really know from what but since I have gotten the POTS & dysautonomia, I have started a histamine free diet and that has helped me a lot with the hives and my POTS symptoms. Think if you ate anything differently, any meds, chemicals, new detergent. All of that stuff will set me off.

Hi there, how do you get tested for hypovolemia? And what are the symptoms?

I got VERY sick and extreme autonomic symptoms when living in a house that we tested and confirmed had toxic mold. It totally set me off and I haven't been the same since. I know a lot about mold so if you have any questions, feel free to ask.

As long as you can tolerate high fiber, Kashi brand products are great. My nutritionist told me that every time I eat I should include protein to keep my blood sugar stable. I can't have dairy and I've seen that can aggravate POTS symptoms so I do raw nuts, all Kashi stuff is high in protein, lean meat, and couscous.

I'm sorry you are having such a hard time. When my symptoms get out of control like that, I feel like giving up too. I would definitely see someone else and I would absolutely see a tertiary care center like Mayo or one of the others. We have a special condition and it requires an extra specialized doctor. Don't give up fighting for your health. I just got to a point where I was desperate and as they say, desperate times call for desperate measures. I got really desperate for relief so I did a complete overhaul diet wise. I got tested for allergies and I only eat all natural foods. That has provided A LOT of relief. I am trying to eat a mostly raw diet of fruits, veggies, nuts, honey with a little eggs and a little fresh cooked meat thrown in there. Absolutely NO boxed or processed stuff. And I think I may have MCAD so I eat none of the histamine containing or releasing foods. And I never cheat. And when I do, I suffer with my bp, heart rate, all of that. Sounds crazy but I think that God, prayers, and my diet have helped me a lot! I try to pace myself and give myself plenty of rest at night and during the day. And just so you know, I'm not one of those people that's running on a treadmill, working, and shopping at the mall. I was bedridden for weeks just 2 months ago and I take a wheelchair when I go out places. The diet and prayer have helped me immensely. Keep fighting and don't give up. Sending hugs and prayers

okay...I want to do this! But getting off my meds means high heart rate, 140's to 150's, and crazy bp fluctuations. I don't know how exercise is even feasible for me right now especially considering I can't walk around the mall.

My health has dramatically changed so I have informed friends, family, and provided updates on facebook, etc. People need to know I'm not right. I can't just sit and have a jolly time baking myself at the beach or stand in line to order at Panera like I used to. I try to NEVER complain to anyone although I cheat a little on here And I don't grieve or sit and ponder all the stuff I would like to do or eat. I love and appreciate my life and thank God for all of the wonderful things He has done for me. I write notes on my FB page about my condition and try to educate people around me about it as much as possible. We all need to stop taking our lives for granted, and I used to also, and be thankful for what we have. I write on FB how vain I used to be and how silly I was to be worried about getting my hair done or the President interrupting my favorite tv show. That's just a waste of life and insulting to The Creator of it all. I have had tons of support from friends and family about my condition and that is great. The people around me legitimately want to understand me. I want to live authentically and be as genuine as possible about who I am. I am who I am. I can't hide what I have. It's all about balance. I don't go crazy with it either looking for attention or sympathy. I just educate about my condition and all the crazy weird things associated with it.....like noises and lights making my heart react. I want people to understand why I'm leaving church early or why I'm missing their kid's birthday party, or why I can't eat their super special homemade chocolate fudge cake that grandma passed down to them (and no, not even a bite). People get so offended and just to conclusions. That's why I communicate with people honestly about my situation and I don't get questioned or misunderstood TOO much although it does happen. And to those people, I give the benefit of the doubt and avoid being bitter. I mean really, who can understand this unless they have it themselves or are a doctor, and even that's not foolproof. Love your self, sick and all, and genuinely discuss it when necessary.

Mercy!!!! I have been very orthostatic the past week or so and it isn't torture but it's really close. It's just plain awful and I'm just desperate now for suggestions. I had been on Midodrine, florinef, and Toperol. During that, I started getting really high bp episodes so I stopped the florinef. I felt better for a while. Now I have been really jumpy on my blood pressure really sporadically. All of a sudden I'll be sitting and I'll start to feel a squeezing in my chest, almost like deep down in my throat. And then I think....here it goes again. I go take my blood pressure and it's 139/105 which, yeah, okay, not so bad. But then I take it immediately after that and it's 100/70. And then I take it again immediately and it's 125/93. Then I take it again and it's 90/60. All in the matter of a minute. And I feel MISERABLE during all this. The squeezing feeling, getting hot, body feels restless, coldish, tingling in my body. I need to get regulated. I totally realize my numbers "aren't that bad". I get that. But this a.m. I was having one of these episodes where I was 87/56 and then it went up in the next moment to 120/87. And I'm talking the very next 20 seconds. This jumping around is making me sick! Even if my actual blood pressure number isn't so bad. PLEASE SOMEBODY....what suggestions do you have so I can get more evened out over here. I'm only 29. I don't like my bp being so high on the bottom when it's 97 or 110....I can't live forever this way. Somebody, somebody give me something to work with. This a.m. I didn't drink much water but good night, I normally do. Any thoughts as to what is causing this and what I can do to fix it???? I'm having an episode as I type hence the desperation.....

She goes on and on about how this saved her and then doesn't tell what exactly to do! Does anybody on here know???? I'm intrigued by this video and I'm ready to get started!!!

I'm on the Metoprolol too. No bad side effects that I have figured out yet. I take 12.5 mg once a day in the morning. Sometimes I think it could do a bit better lowering my heart rate but it has prevented the higher spikes in heart rate for the most part. It did lower my bp significantly but that wasn't a good thing for me since I have low bp to start with. But overall, I think it's a good medication for me.

I was having a rough morning and I needed this. Thanks for making me laugh. I hate to say that because I know how frustrating these doctors can be but this was funny.

Hi Jennifer, After I started on Midodrine, it helped my condition a lot. Hopefully it will do the same for you. As I have learned my new self with this condition, I have learned what triggers it and to avoid it. That has helped a lot. Staying away from the hot showers will help you. I sit down during them now, have lukewarm water, and a cool water rinse on the feet and legs helps with the POTS symptoms afterward. Also, can you tell a pattern to the flushing? Mine usually happens when I am in a stuffy doctor's office, after eating certain foods, or being exposed to certain chemicals such as hairspray or perfume. I have completely changed my diet, plus staying away from all of the girly products and that has helped me tremendously. I keep track of my blood pressure and pulse during housework duties and I pace myself. My physical therapist told me to make sure I breathe well during physical activity like that (sounds simple but sometimes we forget to really focus on taking in plenty of oxygen) and that would help with my heart rate. Try to sit for as much housework as possible....I have even mastered the vacuum while sitting on the floor Anyway, hope this helps and I sent you an email too. Take care

That's great you are nursing. My baby is 10 months old now and I had to stop nursing when he was 8 1/2 months because of my health. I really miss that time but I needed to do it or else I wouldn't be able to take care of him at all. In fact, I would never have stopped nursing him unless something bad happened....which it did. Enjoy that precious baby and take care of yourself too!

Okay...on the angioedema....what is that like? I have a spot on my upper leg above my knee where the area under the skin is hurting. I don't know if it's the muscle or what. It seems like it's spreading. I've been checked for a blood clot and that's negative. I have had it for weeks and no one seems to have an answer on it. At night it get's worse, and if I lay on it, it gets worse also.

I had a high ANA when I was 18 and no one could figure out the meaning about it. It ended up going away and it has tested normally for years. Now 11 years later, I have POTS and dysautonomia and I too have some lingering autoimmune disease but no one knows the dx. My ANA is normal but I have other things in my blood work suggesting the disease. Hang in there and try to find the best rheumatologist you can find. If the one you have doesn't know, find another. Don't give up hope. Take care

So since Dec. 17, I have had this crazy storm beat down on me and I have been all over the internet trying to figure out what's wrong with me since doctors are having a difficult time. I decided to see an immunologist because I keep being told that I have something really rare causing the dysautonomia. I got some labwork back today and the c4 is low, the neutrophils are high, and the absolute pathway is low. I have no clue what any of this is but the nurse told me the doctor says that the numbers suggest an autoimmune disorder which I see on this site can cause dysautonomia. Well I have normal ANA. I'm just trying to figure out which autoimmmune disorder it could be that's causing this. I see on this site that autoimmune disorders can cause dysautonomia but I need a list of those so I can start doing my due diligence. I know GBS can be but that one doesn't seem to match with me. I have some mild neuropathy in my feet and a lot of the dysautonomia symptoms & POTS too. Can anyone just start spouting off the ones linked to dysautonomia so I can research them? And anyone else have these labwork abnormalities???

Hi....there is a POTS specialist EP doctor in Pensacola, Florida that has rave reviews. At the end of this month, God willing, I have a trip planned to the Mayo Clinic in Jacksonville, FL with Dr. Cheshire. He is the only doctor that deals with dysautonomia in the whole state that I can find and that any of my doctors know about. When I set the appointment up, they have me seeing him the first day I come and the same day, I have all of the autonomic testing set as well. They set it all up for me without talking to my doctor. I'll be sure to post something after it's all said and done.

I would definitely mention that to your cardiologist and not blow it off. Don't worry or panic over it but it's not normal to get a heart rate that high from doing dishes. Try to sit when you do the dishes and avoid the hot water. Stay hydrated too. I like to check my pulse regularly when resting and with activity so I can know my body and what it's doing. If your heart rate gets high like that and it doesn't stop, you would need to call your doctor or go to the hospital. It's nice to be knowledgeable about counter-maneuvers to use in order to bring your heart rate down. My cardiologist told me to take a deep breath and then strain hard like you are trying to go to the bathroom. Wait a minute and then try again. He also told me I can massage ONE side of my neck where your artery is (NOT BOTH, YOU'LL PASS OUT). Another way is to drink 16 oz. of water rapidly. For me, when mine gets high, resting, drinking, and elevating my feet helps. I avoid putting my arms over my head because that makes my heart rate go up. My physical therapist told me to breathe in through my nose and out through the mouth when doing activity, going up the stairs, etc. and that will help my heart rate to not jump as much. Are you on a beta blocker? I was on toperol, midodrine, & florinef. I was having random high blood pressure episodes with high heart rate and the florinef was aggravating all of that for me. My cardiologist stopped the florinef so my heart rate has been better. Unmedicated, mine was going up to the 140's and 150's. Keep us posted

Hi...I tried to fast for spiritual benefits such as healing, prayer, closer relationship to God, etc. It was very tough on me. I didn't make it very long. I have POTS and dysautonomia and my physical activity level is significantly less than yours. My blood pressure runs like yours. I think the heat, losing fluids from any sweating, plus losing any salt/calories gained from eating would definitely bring your blood pressure lower. I don't blame you for being nervous. 3 days is a really long time and I think that you should discuss your condition with your instructor, physician, and do some more research before committing yourself to that and getting sick out there. Plus, I'm not sure how your medications would work without food.

One more thing....I get labored/difficulty breathing episodes if I do certain things (stairs, singing, reading books to my son) or eat certain foods or am exposed to chemicals (hair spray, perfumes, candles). Try to see if there is anything that you are doing that happens each time. Just trying to help. I'm sorry you are going through this. This is such a tough condition we all have and try to stay positive. Praying for you today

I get shortness of breath and a host of crazy symptoms myself. I would push for a holter or event monitor so you can be monitored during these episodes. That would give your doctor an idea of what your heart is doing and make you feel a world better if there's nothing weird happening.

Hi....I was getting that done too at the end of this month. Could I have the info too?

Hey there, I'm a newbie and your situation sounds pretty close to mine. I have had lots of near fainting episodes for years until about 8 weeks ago I had the worst one of my life along with slurred speech, involuntary muscle movements, tachycardia, flushing, etc. I get the muscle twitching, shaking, jerking, you name it also. You are definitely in the right place. I get lots of encouragement, information, and support on this site. Your situation is all too familiar to most on here so don't feel alone. I have POTS and dysautonomia. Look up those diagnoses and search out the good knowledgeable doctors in your area. Check out the ways to help and the what to avoid section under POTS on the homepage of this site. Lots of good ideas. And do not get yourself hot. Early on, I didn't realize what a difference taking a hot bath or shower made on my heart until my condition worsened. Avoid extreme temperatures and keep track of anything that you may be eating or doing that aggravates your symptoms. Get up slowly. Stay hydrated....drink tons and tons of water. And if don't already, have a blood pressure cuff at your house so you can monitor bp/pulse when you feel symptoms. That's a great help for your doctor to have that info. Hang in there and be encouraged!

I'm needing some serious help over here since no doctor can figure out what's wrong with me. I am nauseated 24 hours a day. Very close to vomiting and never do. I have lost 4 pounds despite eating well in the last week putting me down to 101 pounds. I have dysautonomia and POTS. Saw an immunologist today and some of the labwork came back. I have low C4 and my neutrophils were high at 75 (40-74 is normal). The doctor told me to wait on the other bloodwork re: the C4 and told me that all my other tests regarding the "absolute" neutrophils were normal so it was nothing to worry about. Yesterday I put hair gel on for the first time since I got this 8 weeks ago and 10 minutes later I was flushing, itching, runny nose, heart and blood pressure reacting. It died down after I washed it out of my hair. The nausea/near vomiting is just miserable. It's like a new symptom develops every few days. Last week I had uncontrollable diarrhea with streaks of blood after the 4th day. Now that has stopped and the nausea is just torture. Sorry to complain. I just want relief and it's simply heartbreaking to see doctor after doctor that doesn't know what is causing this. All of this came on me pretty suddenly 8 weeks ago. I'm trying so hard to have faith that this will dissipate or get better because it was so acute and sudden. Any advice on my labwork results and my symptoms would be cherished.