YolaInBlue

Ana, I used to do aerial silks before dysautonomia hit me. That is one part of my life I miss the most. I still keep them in a suitcase, in my closet. I started aerials when I was 35 and was doing them for 7 years. I always told my family and friends that I'm not quiting aerials until I'm 70. Now, I can only watch videos of me hanging upside down in the air. Yeah, never seen this coming. Hope that one day I can go back to it keeps me motivated to exercise and walk every day. I'll also start with aerial yoga. Great idea.

I also would like to travel, like many people here. I got sick 3 weeks before my first trip to Asia. I had to cancel from a hospital bed 2 days before scheduled departure. My family lives in different places all over Europe and I can't visit them for their big events. I am afraid how flying for 12 hours might affect me. I'm better with car travel lately. I hope to go somewhere cooler this summer. Because of heat intolerance I was trapped for 5 months inside the house last year, here in Florida. I wish I could join my friends and my family going to different outdoor events and local festivals.

When I was on 0.1mg of florinef my doctor prescribed 8meq potassium to take with it, but I tested low several times, so he went up to 20meq and weekly blood tests for a month, my potassium stayed at 3.9-4.2 level. I am currently down to 0.025mg of florinef a day(1/4 pill) and I cut my potassium pill into quarters, too. I haven't checked my level since February, but last time I was at 4.2.

Some people are able to get all potassium from food, I know I can't. I have days when I'm too nauseated to eat much at all. The safest way is to check weekly at first to figure out if you need supplementing and how much, especially if you need to go up on florinef. If you are able to get it just from food you have to be consistent with what you eat every day. I've learned that potassium level can drop quickly. Last year, when I was hospitalized during a flare, at first they tried to give me more florinef, so I was up to 0.15mg but they didn't up my potassium. Next morning blood test showed potassium at 2.9.

I had an episode of tachycardia after taking Zyrtec. I suspect MCAS, but haven't done testing. I experimented with Zyrtec and Zantac on a bad day, but it only made me feel worse, full blown episode with tachycardia, elevated blood pressure, large pupils and frequent urination. I had elevated heart rate for most of that day and a migraine at night. I have taken Zantac before, so it must have been Zyrtec. I hope the effects will wear off quickly for you.

I am also very sensitive to medications. I have some anxiety before trying new ones.

My mess started after a dental surgery and large doses of Advil (800mgx3/day) my dentist prescribed for pain and swelling. I had my first episode about 10 minutes after I took my night dose of Advil 800mg. My heart was beating so fast I couldn't move or talk. I always took Advil or Motrin for migraines, but at 200-400mg a day never had a reaction. I still take Motrin sometimes and it's effective at just 200mg. I had a bad reaction to a pain killer with codeine in the past. I couldn't tolerate Bystolic, but I was fine with Pindolol. Curently I don't take any beta blockers.

Because I suspected MCAS, I tried taking Zyrtec and Zantac together, and those gave me an episode of tachycardia, raised BP, dialated pupils and all other dysautonomia fun.

I have been sensitive to chemicals, like bleach and perfumes all my life, but now I have even stronger reaction to those. About a week ago I went to my cardiologist and a nurse was wearing a strong perfume. She couldn't take my blood pressure, because machine errored out several times, finally when she took it, it was 88/53. Few minutes later I started getting a migraine. Dr. Benarroch at Mayo suspects that migraines play a big role in my dysautonomia episodes, but I feel like there is more to it. After all, something triggers migraines and sometimes I have episodes or lightheadness without having a migraine.

I am on Florinef, but it doesn't help with my sensitivities. It helps a great deal to keep my blood pressure more steady though, so even when I get episodes, they are not as bad as in the beginning.

My dysautonomia started after a dental surgery. Even before that, I always felt off and dizzy after dental anesthesia for entire day. I opted out of anesthetics several times with small cavities because of that. Now I have 2 cavities and a crown to do and I'm not taking a risk with novocaine. I am avoiding the whole thing at the moment, but when I decide to do it I'll go for something without epinephrine for sure.

It's good to hear you've been admitted. What I found out during my hospital stays since all this started, sometimes you have to complain a lot and insist to get things done. Good luck to you.

I hope today's ER visit will go much better for you.

Do you at least have a place you can go to get IV fluids when you are dehydrated? I found urgent care where I can get saline IV, got a prescription from my dysautonomia doctor.

Wishing you well.

I came back for Mayo a week ago and yesterday looking at my lab results I found out that I am positive for GAD65 at 0.12 nmol/L, which is 6 times over the normal limit. I read their info, but still don't understand much. A note under my lab results says: This profile is consistent with organ-specific neurologic autoimmunity and predisposition to thyrogastric disorders, including thyroiditis, pernicious anemia, type 1 diabetes. I've sent a message to the doctor but still waiting for a reply.

Does this result mean that I could benefit from IVIG? Did anybody that tested possitive followed on that with additional tests? I'm not sure what is the next step.

I raised head of the bed and have been sleeping like that for over a year now. I don't think it makes a difference but that was the first question they asked me in Mayo autonomic clinic, about non-pharmacological things I've tried. I have improved overall, but it's hard to tell if raising head of the bed had any role in that. I think Florinef is what helped me the most. When I get flares I'm symptomatic no matter how I sleep.

I was tested by my endocrynologist, because I have a problem with frequent urination and dehydration during flare ups. Basically, I can't get out of a flare without IV saline. My cortisol was on the lower side of normal. I just came back from Mayo, where they also wanted me to see their endocrynologist to clear up that I don't have Addison's. I don't. I've been also to Mayo autonomic clinic and got an explanation to those symptoms there.

It wasn't until after the procedure I asked about this again and she said that "Most opt out sedation when it's a colonoscopy". No wonder! Who in their right mind could handle something like that? Never again. Not for $100,000 in cash!

Sorry Ryan that you had such a painful experience.

I'm at a loss to know why opting out of sedation with a colonoscopy would be any less painful. I thought that a colonoscopy would be very painful without sedation. Has anyone experienced this/

BLUE

I have done endoscopy and about 15 minutes of colonoscopy without anything. I am very sensitive to meds, many give me tachycardia, high blood pressure and skipped heartbeats and I can't handle dental anesthetics.

Endoscopy was horrible because of chocking, burping and feeling like you want to puke but can't, but it wasn't really painful and it was over fairly quickly. Colonoscopy was very painful. I couldn't handle the pain at some point and was sedated for the last 10 minutes of the procedure. They said I was lifting my head and opening eyes from time to time, but I have no recollection of this. Anesthesiologist was very careful with me and I wish I've done it with sedation all along.

2 months ago my vit. D level was at 20. I live in Florida and have heat intolerance, so in the summer I could only go out early in the morning or after the sunset. I was taking 3000 IU a day at that time, but obviously it wasn't enough. I was told by my family doctor to take 5000 IU a day. She wants to test me again in January. She said it needs to be over 30, but nothing about the upper limit.

They probably thought you must be insane wanting to go through it conscious. They did with me and asked me several times if I am sure I don't want any sedation.

Just one advice, if you need a colonoscopy don't try to do it without a sedation. That one is even worse. I am gratefull they kept an anesthesiologist in the room anyway and he knocked me out when I almost bit the nurse.

I am sorry. It is a horrible experience, I had it last year and also opted out of sedation and numbing, because of my sensitivity to medication brought on by dysautonomia. I had wonderful nurses though, that were comforting me and counting time till the end of the procedure.

Yes, I had both for several months when it all started and during a flare this summer. I asked a few doctors what causes those symptoms but didn't get an answer.

I am so sorry. I hope things get better for you.

For me some medications caused an episode of tachycardia, chest tightness and breathing problems within 20 minutes from taking them. I have always been sensitive to fragrances (migraines), but since dysautonomia almost everything has to be fragrance free. The smell of bleach is the worst, causes me to vomit. I don't have an allergic reaction to foods, but going gluten free and reducing dairy helped my GI symptoms. Definitely since the onset of dysautonomia I am more sensitive to things.

I had rheumatic fever at 19. It left me with a damaged mitral valve. I was going undiagnosed for over 2 months, then spend a month in a hospital, then 2 months in another hospital and a full year on antibiotics. My biggest issue was vomiting and stomach pain. Everytime I have a strep throat infection I know, because I get the same pain. My family doctor at a time was insisting it was just anxiety, because it happened during college exams. She ignored my swollen feet and joints. I also had red, bumpy rash on legs and hands. I remember heart pain and general weakness, I was exhausted from just walking.

My pre-POTS normal BP was about that and I mostly felt ok. I was always told by medical proffesionals that low is better than high, and how it means a healthy heart and such. I don't know now. Nowdays my blood pressure (standing) runs usually 92-98/55 and sometimes I feel ok, even with it being that low, sometimes I am dizzy and can't function. I try to raise it to over a 100 with florinef, water, salt and midodrine.

I know the feeling you are talking about in stores. I have it, too and can't shop for more than 20 minutes at the time or I get lightheaded and can't focus at all. Especially large stores. I was told by my doctor that this happens because the nervous system gets overstimulated (lighting,smells) and blood pressure drops. I take midodrine before my trips to the store, but that only partially helps. I make shopping lists to make my time in the store as short as possible and shop only on my good days. I found some smaller stores that don't bother me that much. When I have to visit 2 or 3 stores in one outing, and I know which one bothers me the most I leave that one to be the last one and make it quick there. I also shop on the internet for many things now.

I also avoid super processed fats and GMO as much as possible. It is hard with GMOs sometimes since there is no requirement for those foods to be labeled.

Hanice, you're doing a great thing planting your own organic vegetables. You're in Florida, right? Do you grow them in soil or hydroponically? I'm in central FL and have hard time gardening here. No matter how much compost I put in vegetable beds, it was all washed out by the end of the summer and only sand left. I plant in pots now and grow organically, but loose a lot to birds, squarrels, bugs and different leaf molds. Some veggies do better than others.

Alex, castor oil is awesome for hair and eyelashes, conditions and makes them grow. Hair might grow slightly darker if you use it, which for eyelashes is a plus. I find it too thick and strong smelling for skin. For skin I love camelia and jojoba oils.

I promise to stay on the subject from now on.

My closest family believes in my illness, but they all live far away, across the Atlantic. They haven't seen me since I got sick, only hear what I'm going through.

As for my friends, some do, some don't (abot 50/50, I would say) but most of them hardly call me or visit anymore. They are probably afraid that I might ask for a favor, since I don't have any family nearby and I'm mostly homebound. And I guess I am not that much fun to be around now. Whenever I call, they start the conversation by saying how busy they are. Kind of sad. I have only few people left that I can talk to. I don't know if they even make 25%.

I have been using coconut oil for about 2 years now and love it. It enhances the taste of food. I also use it as a hair mask, makes your hair soft after washing it. I got sick after I was already using it, so I don't know if it had any positive impact on my symptoms. I wish. I also take fish oil capsules, one a day.

I believe that moderation and variety are the keys to healthy eating. Fats are not all bad, you need them to absorb some vitamins, too. Of course, preparing your own food and staying away from overprocessed food is the best. I worked as a fitness instructor (aerial arts) pre POTS and in skin care, and never been owerweight in my life, but never eaten low fat or fat free. My cholesterol is fine, too. If I put a pund or two it is because of desserts, not fats. I have to fight my sweet tooth all the time. There isn't really anything good about refined sugar, only it tastes good.

Midodrine has been helpful in my case, as well. I take 2.5 mg once or twice a day. It helped me once during an episode last year, when my episodes were really bad. 2.5 mg raises my blood pressure by about 10 points after 30 minutes. Lasts 3 hours and I have no side effects at such a small dose. When I take it before my daily walk I don't come back home dizzy with black spots in front of my eyes. Sometimes salt and water just don't do the trick.

I am like you, Cala afraid to start new meds. I had an episode of tachycardia and blood pressure spike 2 weeks ago, after trying Zyrtek and Zantac (doses my 14 year old daughter takes). So I always start with a small dose to be on a safer side. Unfortunatelly medications work differently on different people, so unless you try you'll never know.

I am vit.D deficient (level is at 20 now, was at 17) and today my primary doctor prescribed 5,000 IU a day. I was on 3,000 IU for several months, but apparently it's not enough. During the summer I could only go out in the evening, because of heat intolerance. I live in Florida. If you have some sun exposure you might need less.

I was recently prescribed desmopressin. My problem is frequent urination when I'm symptomatic. I loose more water from my body than I am able to replace with drinking and increased salt. Lost 4 pounds in one day a month ago. I also have low blood pressure (today: 102/54 sitting, 94/50 standing) and take 0.1mg florineff daily and midodrine when I am dizzy.

The doctor that prescribed dessmopressin for me put me on IV for 2 days to replace fluids and then gave me dessmopressin. I started with 0.5mg twice a day and was told that I can increase to 0.1, if needed. I stayed on 0.5mg. It raised my blood pressure nicely. In a hospital it was 116/65 sitting. I was told not to drink too much at the time, but still drink something. Desmopressin can lower blood sodium, if you drink too much while on it. I had blood tests daily in a hospital for 3 days and I continued once a week for a month after discharge. Low blood sodium can have scarry effects. Mine was good. The pill workes for about 8 hours for me, no side effects. I had 2 cups of liquids while on my day dose and 2-3 cups and some salt between each dose of desmopressin, but with my florinef. I don't take desmopressin on regular basis now, only when symptomatic and dehydrating. For me, balancing my water intake and electrolytes with florinef and desmopressin is a lot of work. I took it on regularly for about 6 weeks. I would say it helped in raising blood pressure.