YolaInBlue

I went to Dr. Thompson in Pensacola, FL. He is a dysautonomia specialist and he has POTS himself. He asked me if I want a disabled parking permit.

It's just a simple form to fill out and take to DMV. They don't ask any questions or require any tests.

It's been so helpful to have it especially on hot days, here in Florida.

If you have an understanding doctor, it shouldn't be a problem.

I hope you'll get a chance to talk to him and explain your situation. I really don't have anybody else I can recommend, but there must be someone better than your current cardiologist. Hopefully you'll find a doctor you can trust with the surgery.

Hi, Courtney. My cardiologist has some knowledge about POTS and is also a very good cardiologist. He was the one that helped in my diagnosis. The team of doctors that tried to figure out what was wrong with me asked him for a consultation. He asked all the right questions about my symptoms, put me on Florinef, tried different beta blockers and was willing to set up saline IV infusions, since they help me a lot. He never dismissed my symptoms. His name is Dr. Ranadive at Orlando Heart Specialists. I see him in Altamonte office and I know he's affiliated with FL Hospital Altamonte. He does a lot of heart surgeries, but I don't know if he is affiliated with any other hospitals in the area. I have a MVP. I don't have any experience with him as a surgeon, only what I've heard. Even if you decide to to do your surgery at FL Hospital Orlando, I think dr. Ranadive would be good for a second opinion. Just make sure to see him, not any of his partners.

I wish I could help more. All the best to you, hang in there.

I worked as a fitness instructor 4-5 hours a day/ 6-7 days a week, running my fitness studio until a year before getting sick. I did aerial arts, which require a lot of strength and conditioning. Even though I didn't teach lately, I remained very active, exercising 1-2 hours every day. I also eat healthy, organic food and have my own garden. It bothers me when I hear that maybe I brought it on myself by being deconditioned. When a doctor at the hospital suggested it, I showed him my aerial photos on my laptop and asked "really?" He started laughing and said "never mind". My resting heart rates were in the 50's before getting dysautonomia, now the are in the 70's with medication. I lost a lot of muscle, but I slowly build up on exercise even though it makes me feel like crap. I used to feel great after a workout. I wouldn't be able to exercise at all if not for medication. I also get echocardiogram every couple of years due to MVP that I was diagnosed with at the age 19. The reports always state that my heart is normal size.

I've read a lot of people on this forum were active before this condition hit them one day. If the solution to our problems was simply exercise everybody would do it and get better. We are not a bunch of stubborn people that enjoy being sick. I don't like the image Dr. Levine's study portrays. He might be right when it comes to astronauts. It's simply not true in most of our cases and it gives other doctors wrong impression.

My right side is more affected by numbness, neck and shoulder pain and cold. At the beginning of this flare I almost didn't sweat. When I started sweating again, it came back to my left side first. I still sweat less under my right arm. No explanation from doctors.

I take a small dose of Midodrine and Pindolol in the morning. Usually 2.5 mg both, but, like Hope, I check my blood pressure first. When it's low I take only a quarter pill of Pindolol instead of half. These are small doses but they lower my heart rate by about 20 bpm. That's all I need. My heart rates are much better nowdays, only in the morning they are 100-115 standing. I manage to keep my blood pressure in the 95-115/50-70 range, so this combo seems to work. I also take 0.05 of Florinef daily.

I don't know what's the official verdict, but I snack on goji berries every day. I'm on Florineff (0.05mg) and a small dose of Midodrine and Pindolol (2.5mg in the morning-both). I never had any worse symptoms after eating them. In fact, I am slowly improving (not because of goji berries as I was eating them before getting sick, too). They are loaded with antioxidants and Vit. A.

I've had it done because of iron deficiency anemia. It showed stomach inflammation, nothing else. I've done endoscopy without an anesthesia, because I was scared how my body is gonna react to it. It was uncomfortable but not painful. I was on IV saline, which I'm sure helped. For me colonoscopy was worse. My iron level improved after digestion improved (gluten free, modified diet, digestive enzymes) and with 4 months on iron supplement.

Good luck to you!

I tried to prep for an outpatient colonoscopy back in January. Fasting (only jello and clear broth) gave me a bad headache. My blood pressure was low and I felt horrible, so I went for IV saline that evening, as I have a prescription for it. They were rushing to give me as much fluids as they could before closing the clinic.I had an episode during saline infusion. That put me in bed for 2 days. I had to cancel the procedure.

After talking to my doctor about it, he decided to do the procedure in a hospital. They admitted me a night before. I was on a slow drip IV saline with glucose. I was able to prep and go through a procedure without any problems. I did talk to anesthesiologist before the procedure. He was aware of my condition and reassured me that he can deal with sudden heart rate or blood pressure change. He gave me mild dose of anesthetic (they said I was lifting my head from time to time, I don't remember it) and they monitored my blood pressure and heart rate. I felt much safer going through it in a hospital setting. Maybe you can discuss that option with your doctor.

Loading and unloading a dishwasher, cleaning cat's litter, taking something out the oven and any activity involving bending are the worst for me. I'm glad I have teenage daughters to help me with those.

I sort dirty laundry sitting on the floor, fold and iron while sitting on the couch. I haven't figured out a way to load a dishwasher without bending.

I can't keep up with housework in general. I used to decorate for every season, now just keeping it clean is a challenge.

I was diagnosed in FL Hospital Altamonte, but haven't found a specialist to treat me in central FL. I went to Dr. Thompson in Pensacola and a 7-hour drive was worth it. I can't really recommend anyone else.

I'm sorry you had to go through this. I hope you feel better today.

I had my last episode, in January, during saline infusion. I went for IV because I was fasting that day to prepare for colonoscopy. I had a headache (I always do with skipping meals) and thought saline will make me feel better. I had the first 1l. bag in 2 and a half hours and the nurse put a second one on faster drip. I get my saline in doctors office and they were closing in 1 hour, so she wanted me to get as much saline as I could. About 10 minutes into a second bag I got really cold, soon after, I felt a squeeze in my chest, my heart started racing, I had shortness of breath, red blotchy spots on my chest, tremors for about 20 minutes and frequent urination for several hours (always happens with my episodes). I was in bed for 2 days after that tired and unable to do anything.

I had to cancel that colonoscopy appointment, but they admitted me to a hospital a week later, put me on a slow dripping IV saline with glucose and I was able to go through all the preparation with only a headache. I went through a colonoscopy and sedation without any incident. It must have been the fast drip that caused my episode a week ealier.

Our bodies are so sensitive to sudden changes. I think the theory of imbalance of electrolytes makes sense.

I would like to find out the cause of my dysautonomia. My appointment at Vanderbilt is in May, so hopefully they point me in the right direction. I had an appointment with my endo last week and he said we explored everything there and all the tests came back normal. Cardiologist says the same.

As to my daily life, my goal is to be able to drive, at least locally; be able to function at 75% of my old self and take a trip to Japan I had to cancel due to getting sick. I would like to feel well enough to reduce my medication, if not get off it. Right now medication allows me to improve. I am able to gradually increase my activity level and exercise. I still have bad days when I can't do much, but no really bad episodes for the last 2 months even though I do more. I used to get episodes that put me in bed for 2 days from just loading a dishwasher or walking outside. No more. I hope that I'll continue to improve.

With the onset of POTS I lost 10 lbs. in two weeks. I was constantly hungry and eating more than usual, and still loosing weight. I also developed anemia.

I've gained 14 lbs since then, due to Florinef and not enough activity (I'm working on that).

I noticed that I loose 3-4 lb. when I have several bad days in a row. Now I'm at 122lbs. I'm 5'4". Ideally, I would like to be at my pre-POTS weight, at 118lbs.

I also go by how I feel with salt. I only watch that I drink enough. I always have an electrolyte drink with my Florinef x 2 day.

When I feel crappy I check my blood pressure. If it's low I increase salt. When it's close to normal I drink water and eat home made soups.

I use unflavored Pedialyte sometimes. Sweet drinks always make me nauseated, but on my bad days I can't have any sugar at all. I never liked Gatorade anyway. Unflavored Pedialyte is clear, without any artificial colors and tastes a bit salty, not bad at all. It is quite expensive ($5 for 1 l. bottle). I also use NUUN tabs. They came in many flavors and you dissolve them in water. They can be handy to take with you when you go shopping or travel. You can buy them online. I found them cheap on Amazon. They make a slightly sweet drink. I also drink simple solution of water with salt. I don't have a recipe. I just add a pinch of sea salt to a cup of water.

HT888, I hope your trip goes well. Just like Angela, I am curious what dysautonomia specialists in Russia have to say. If you find a good neurologist in St. Petersburg, please let me know. We have friends there, I'm just not well enough for a long flight yet.

If you decide to move back your daughter's Russian will improve very fast. I took my girls to Poland for a year, to attend Polish schools, learn some language and get to know the family.They were 10 and 15 at a time. They both spoke Polish quite ok for American born children, but my younger one couldn't read it or write it. After a year in Polish schools they are both fluent.

I had Russian in school for several years. I can still read and understand most of the conversation but it's hard to speak it when you're out of practice.

So good to know different languages, though. I tell that to my girls. I'm learning Japanese now.

Jknh9, that is very interesting. I have some friends in Japan. I was about to take a trip to Japan when I got sick last summer. I had to cancel everything. One of my friends actually knew what I was talking about and said that autonomic dysfunction has been researched in Japan (advised me to come to Japan for a better treatment, too). I was very surprised.

I'm working on getting myself well enough to take that trip. Just vacation, no doctors. I'm scared of a long flight. I hope I'll be able to go and enjoy it without emergency doctor visits. It's good to know Japanese name of my condition, just in case. Thank you so much

I had tremors twice during particularly bad episodes. I don't think my tremors were that bad, though. The nurse in ER asked me why I was shaking. That was my last episode before the diagnosis. Each one was getting worse and lasting longer. That one lasted for over 6 hours. At that time my husband noticed that my pupils were huge. I have no idea if they were dilated during previous episodes. I don't get such bad episodes since taking meds.

I'm originally from Poland and have very hard time explaining this condition to my mother. She asked me how it translates to Polish because she wanted to find some literature on it. ANS disorders go under "zaburzenia autonomicznego ukladu nerwowego" but it's a general term. I can't find anything on POTS or orthostatic intolerance at all. I'm sure a lot of people are misdiagnosed in Poland.

It says "may require refrigeration" on mine. I get them monthly. Until yesterday I kept them on the night table.

They work fine but after reading all of the above I moved them to the fridge, just in case.

Mine are made by TEVA, I get them at Target Pharmacy.

I'm still looking for the cause. I started having "episodes" a few days after dental surgery, last year, but I don't know if that caused it or just contributed to it. Within a month I was having them daily and I could hardly get out of bed. I had two mild "episodes" before that. First one, flying from Europe 4 years ago, I started feeling dizzy, my heart racing. That lasted for about 5 minutes and made me nervous, however I got on the connecting flight and had no further symptoms. Then 2 years ago I almost fainted while driving, but I got enough warning to get off the road, lie down and elevate my legs. It was a very hot summer day here in Florida, my

car was parked outside, I thought that was the cause.

My family doctor thinks that looking for the cause is a waste of time, I should rather look for medications that help me. I don't think that's a right approach, so I keep on searching.

I've been on Florinef for over 4 months now. I wouldn't be able to function without it. I'm taking 0.075mg a day. They started me on 0.2 at first, but that gave me horrible headaches and blood pressure spikes. My cardiologist changed it to 0.1mg a day, but it still was too much. With 0.05 I was back to having episodes. 0.075mg seems just right. I split it into twice a day: half a pill in the morning and a 1/4 in the evening. I was taking salt pills with it at first, but my stomach hurts even after half of a salt pill. I just try to eat something salty, like pickles or miso soup. I use Himalayan pink salt on food. It tastes great. If my blood pressure falls very low (90/55 is common), I just add this salt to a glass of water and drink it. I also drink 1 unflavored Pedialyte or 1 liter of Nuun electrolyte solution a day, in addition to water, soups and tea. I always make sure to drink 2 glasses of something and eat something salty right after I take the pill. I have good and bad days but nothing close to how bad it was before the Florineff.

I asked my doctor to test my potassium levels after about a month on Florinef. They were slightly low, so he prescribed 10meq potassium chloride. I also bought a bottle of liquid calcium/magnessium/vit.d and take a teaspoon a day. You can find it in health food stores. I take a multivitamin, too.

Florinef still works

I started learning a new language just before I got sick. Actually I was about to leave on a trip to practice what I've learned. That trip was canceled from a hospital bed but I hope I can get myself well enough to travel. If I didn't have that, I think I would go crazy. I do online language exchange. It's a lot of fun and gives me an opportunity to talk to people. I miss that since I can't attend many social gatherings.

I also exercise, watch movies, listen to music, do scrapbooks, cook and bake when I feel well enough to do it. My daughter's boyfriend gave me a cook book full of gluten-free recipes as a Christmas gift. I try at least one a week.

I also paint on glass. I sell my paintings, but enjoy doing it, too. Sometimes I'm too dizzy to paint a straight line or tiny details. It's frustrating.

I live in Florida, so right now is the best time to enjoy outdoors. When I can't walk, at least I can seat outside and read a book. My garden is begging for some attention but I'm not well enough to do weeding and planting. I've tried a couple of times.

I have heat intolerance so actually I don't look forward to summer time.

I'm one of those people that can't push through symptoms with exercise. If I do, the next day I can't get out of bed at all.

I realize the importance of exercise, I'm a certified fitness instructor (though I haven't been working in that field for 2 years), and I was in great shape when dysautonomia hit me. I especially miss aerial acrobatics that I've been doing for 7 years. Sometimes I look at my silks and cry. I lost a lot of muscle initially (3 months bedridden). Doctor that diagnosed me at the hospital (nephrologist) asked me if I was deconditioned prior to my illness. I showed him my aerial pictures on my laptop and his jaw fell. He started laughing. He found it funny that a person like me would get this condition. He said not to worry, exercise and florineff can cure me and I can go back to hanging upside down in the air. I wish it was that simple.

At first I was pushing myself on my good days and didn't get anywhere. I started having episodes again and that put me back in bed for several days at the time. Then I visited dr. Thompson and he advised me to built up slowly but exercise every day, which I do now. He also added a beta blocker and midodrine which help me (especially midodrine).

My first goal was to alternate sitting and standing, and spend as much time upright as I could. I also started with 10 minutes of recumbent bike on the lowest resistance setting. Every 3-4 days I was adding more time and/or resistance.

Now my routine looks like this:

Mornings are the worst, so I start around noon with a 10-15 minute walk outside to get some vit.D. It's a slow walk with many stops. Around 2p.m. I make sure to get up and walk around the house for 10-15 minutes or until dizzy. On good days I do Pilates, Yoga or ab exercises on the mat instead. Sometimes I turn on music and try to dance around the living room, lol.

Around 4-5 p.m. I take a short walk outside again. Sometimes I can only sit on a bench outside. It's still good to get out of the house.

At 5:30p.m. I usually have to lie down for an hour or two. Then I take my afternoon dose of florineff, load on water and salt, and after about an hour I do recumbent bike. I'm currently doing 35 minutes on medium resistance (level 5-6 out of 12) while watching a movie. I keep my heart rate at about 120 which is 50 pts increase from just sitting on the bike. If I go higher I get very dizzy. I do free weights for arms while sitting and finish with stretching on the floor (trying to get my splits back ).

I have no visible blood pooling in my legs and compression hose do nothing for me. I am however dizzy a lot, especially after meals, so I suspect blood pools in my abdomen.

I wouldn't be able to function without florineff. Right after I noticed that IV saline helps me (ER visits before my diagnosis) I tried Pedialyte, water and salt but it just didn't stay in my body. Whatever I drank I peed right out and was constantly thirsty. They first tested me for diabetes insipidus. First month on florineff was tough but once my body adjusted I could get out of bed and start getting my life back. I know it doesn't work for everybody. It made a big difference for me, but it did take a month of blood pressure spikes and headaches.

Now I'm gonna get ready for my walk