janiedelite

That's so cool! It almost makes me want to drive to California and do their exercise test to see if I have abnormal energy production. This makes sense why when I rest all week so that I have enough energy to go to a function, and folks say how "good" I look (even though I just go from chair to chair). But there is always a cut-off point, either that night or a couple days later, when my body crashes because I did too much and I'm down for hours or sometimes weeks. I hope more research is done along these lines so that our CFS/exercise intolerance/etc. is given the validation we need! And maybe even a cure!

Hi bizbiz,

For sure fighting with my husband will set off my symptoms . It was a good thing that you went to lay down, rest and took the beta blocker. It seems like most any stress (physical or emotional) will make me pool more, get more tachy, etc. Sounds like you have quite a bit of stress going on right now too, though! So sorry for the lack of support from your husband. It's good that you're recognizing the beginnings of an "episode" before they get out of control.

Florinef alone made my BP rise too. That's why I went to cardio doc to see what they thought of the whole thing. I feel more comfortable with this doc because he seems to tie everything together more and balance everything out more.

As far as beta-blockers go... My heart slows at night too (as everyone's does). I have been told just to make sure I take it 4-6 hours before bed so that at bed time, it's gone through. I actually take my last dose at 3:00 in the afternoon and that seems to work for me. If I don't take the BB, my heart rate will shoot up 100 points (example from 60 to 160) just standing and crossing the room! (BP rises 20-30/10-15)

Hollie

Thanks again for sharing your experiences Hollie! You have more of an extreme in heart rate changes (100pts!) than I do (average 50 pts difference between lying and standing). But the Mayo doc said that I could still benefit from a beta blocker to curb my excessive sympathetic response. I wasn't aware beta blockers do this, but I'm also rather new to understanding dysautonomia, too. And duh, it makes sense to take the BB in early afternoon!

I drank maybe 1 and 1/2 liters yesterday (down from my usual 3 L as of late). I'm 3 pounds less this morning, but having more problems with excessive adrenaline (feeling wired, nauseated, tremor). And I still had to use the bathroom 3 times last night... with very full bladders every time! I have to go grocery shopping this morning so I'll drink my G2 with a little salt added for energy, but won't force fluids after that.

Thanks again, Jittery Janie

You sound EXACTLY like me... higher BP and higher HR on standing. I try to drink as much water as possible too, but I really don't push my salts too much because of the higher BP. I saw Fealey too, about a year ago. He only put me on Florenef alone and told me to drink lots. I now see a cardio elsewhere and am on metoprol (beta-blocker to keep the HR down). This will also make your BP fall, so am on Midodrine to balance it back up. It's taken about 8 months and am still not where I would like, but am getting there. I went off all meds for 4 days last week (for testing) and boy, did I pay for it! I soon was reminded how bad I was without meds!

I don't know if it's just me, but it seems like the more I drink, the more thirsty I get. It seems like if I only have a couple of glasses a day, my mouth, eyes, nose, and lips are NOT dry but my body feels it. I don't feel thirsty either. Yet if I drink 100 oz a day, my mouth, eyes, nose, lips are SO dry I can't stand it. And I have this continual thirst, like I can't get enough. Anyone else feel this way?

Hollie

Thanks for your input, Hollie! Florinef made my BP go too high. I wasn't so bad on 0.05 mg twice a day, but when I went up to 0.1mg the chest pain, headache and hypertension was terrible.

As far as thirst goes, my throat/body is usually dry and thirsty no matter what I do. The only thing that helps is tons of liquid (3 L/day) and salt (4+gms/day). But then when I lay down, my heartrate slows down, BP goes up, chest hurts and back of my head hurts until I get up the next morning. Once I'm upright, the headache lessens somewhat unless I'm up too long and then the thirst starts and the top of my head hurts. My doc hasn't tried a beta blocker yet because of my slow heartrate at night. I'm glad you found a combo that works for you!

My thirst is never really quenched, but I don't have the problem you have where you're thirstier the more you drink. In nursing school we learned the phrase "salt follows water." Maybe you're losing too much salt with all the fluids???

Thanks, Janie

Hi, thankful:

I haven't had a problem so far with too much salt or fluids. The salt dosage sounds about the same as mine (although, it seems paradoxical that your doctor has you on a high-salt diet with high blood pressure!), but my doctor at Harvard only had me drinking 2 liters of fluid. 3 liters seems like an awful lot.

Also, how are you taking in your salt and fluids. Gatorade is very high in calories (80 calories per 8 oz, I think?) and high-salt foods are almost always high fat. If your caloric intake didn't increase, though, you may want to contact your doctor in the weight gain persists. I started out drinking Gatorade but realized I was taking in an extra 600+ calories a day!

I have the opposite problem right now. I'm so sick and tired of drinking fluids that I'm subconsciously avoiding them.

Thanks for reading my post, Deucykub!

Dr. Fealey said that when I'm hypovolemic, my adrenals pump out more catecholamines to maintain adequate blood flow to my brain which raise my BP. And normally the longer I stand, the higher my BP goes even though my heartrate goes up too (up to 160/100 or higher). However, since I've been more hydrated my standing BP is 120's/80's standing, and my heartrate is in the 90's instead of 130's. I've been really careful with calories and get my salt with G2 (just 70 calories in 20 oz), pickles, chicken bouillion cubes, etc. I've actually been eating maybe 70% of my normal calories for the last 2-3 weeks because all the extra fluids make me full.

I'm cutting back on fluids today and see what happens. It just seems like such a fine balance. Thanks again Deucykub!

Okay, since I got back from Mayo I've been taking in more salt and fluids like it was my job (per Dr. Fealey's suggestion)! At first I noticed that I could finally stand for a few minutes without that awful tachycardia and dizziness, and my BP even went down (when I'm hypovolemic my BP goes up with my heartrate). Well for the last week, I've been having increasing chest pain and headache when I lay down. My heartrate is in the low 40's, BP last night was 146/66 (about 30 points higher than normal on the top number for me), and I'm thinking that I'm overdoing the fluids and salt. I figure I'm taking in 4-5 gms of sodium a day, with about 3 liters of liquid. I've also gained 5 pounds of "mystery weight" in the last week .

It just seems like such a fine balance... get a little dehydrated and have one set of symptoms, but I can trigger another set of symptoms with too much salt and fluid. Argh! I just wish I could feel "normal" for once. Don't we all???

Anyone else have this problem? Janie

Search here under pulse pressure. It usually shows dehydration. keep drinking!

Firewatcher is right. Get hydrated (salt, fluids, compression hose, etc.) and don't push yourself until you start feeling better.

Does anyone else yawn alot on bad days?

Ann

Yes! It seems like I can't get enough oxygen sometimes (although I've checked my O2 sats and they're normal), and yawning gives me temporary relief. It seems like I yawn a lot on most days now.

That's great! One less thing to worry about .

You were really brave even to try an EGD without sedation! I really hope that you tolerate the anesthesia, and that you get some answers soon. Janie

Since having POTS, my hubby says I've been progressively snoring more. I haven't gained weight or increased meds. I'm actually only taking occasional advil or zantac right now. I'm tired all day, but at around 10pm I get hit with tiredness and get nauseated if I don't go right to bed. Every night I wake around 4-5am and sometimes stay awake for a couple hours, still exhausted but can't sleep. Often I can't get back to sleep and feel even more tired all day. I can't nap, though. My catecholamines were high at Mayo and I wonder if all this adrenaline keeps me from sleeping unless I'm absolutely exhausted. I feel best if I can stay asleep til 9am or later, although I'll wake up really dehydrated. First thing, I warm a cup of chicken broth and drink a gatorade and wait an hour or so til I get hydrated enough to bathe.

I don't know if what I experience is what you're describing. Last June I started having burning red feet and within a week it spread to my hands, face, and mouth. It feels like a constant sore throat. Under stress or if I get too warm the burning moves centrally and in the summer is so unbearable I can't tolerate wearing clothes somedays. When I get stressed, though, I've described to my doctor that it feels like I'm burning from the inside out. I have had a barium swallow and I do have high-grade reflux. I also have small bowel dysmotility which probably also contributes to my reflux, but I don't have much problems with coughing. Also my mouth even tastes like metal. The only thing that somewhat helps is lots of rest, sometimes benadryl helps, and staying really hydrated. Sometimes I have to take pain meds in order to sleep through the pain because it's worse at night, especially in the warm months. Mayo also said I have small fiber neuropathy. Sometimes with the burning my temp goes up a degree or two, but that might be from sympathetic overactivity?

I think it depends on the experience and technique of the PT. So much of physical therapy and dysautonomia seems to be aimed at building strength and reconditioning. I've been to over a hundred PT appointments over the past 2 years for treatment of a hip and back injury after a car accident and surgery. After getting showered and dressed, riding to the clinic, and walking into the building (the PT just lets me walk back to her office and lay down) I'm exhausted and often am worn out for the following day or two. These sessions were focused on strengthening and were before I'd been to Mayo and this PT didn't really understand dysautonomia. But when this PT worked on mobilizing my thoracic spine I had a decrease in my adrenaline symtoms and even skin pain for a few hours . Very wierd, but it felt good! She said this could be explained by perhaps relaxing the sympathetic nerves which run right behind the thoracic spine.

So I'm having more back and hip pain lately and am going to resume PT with a different therapist ina few weeks. This PT understands POTS and uses very gentle techniques to release tight muscles, scar tissue, align my back and SI joint, etc. She does want me to spend time in the pool (starting with 10 minutes a session and assisted by a pool therapist). Dr. Fealey also strongly suggested me using a pool. I'm a little more comfortable with this therapist because she knows my limits!!!

Having back/neck/and hip problems, I understand how decreasing your pain could certainly make you feel better!

Hope you continue to get good results!

Hello Kits,

My hubby and I met through an online dating site (before I had POTS), but I became ill just after we were engaged. We dated 2 years before we got married and we'll be married 2 years next month. During the last 3 years, I've had 2 hip surgeries due to a car accident and POTS since 10/06 (when I first went to the ER for tachycardia). We've had severe financial hardship due to my disability as well as emotional heartache as doctor after doctor didn't know what to do with me and told me not to get pregnant. My hubby said that if it meant jeopardizing my health, he'd give up the dream of having a baby.

After being seen at Mayo by someone who actually understood dysautonomia, the doc there gave us the green light on getting pregnant, and I see a high-risk OB next month! I didn't get married til I was 33 because with or without POTS it's so hard to find a quality guy. But I'm so glad I waited for the right one. He really takes pride in being able to provide for us, even though we don't live in luxury on his teacher salary, and tells me whenever I'm down that he'd marry me again anyday.

I've been off all meds for 3 weeks now (except for occasional advil and zantac) and just have to be super diligent about rest, fluids, and salt. We'll see how things go... . If I can get pregnant and have a baby, I will most likely go back on meds at that time.

Hope this post wasn't too cheesy . We've had our rough patches, too, and will have more in the future. But our faith in God and each other helps guide us through the worst of things. I can't imagine dating again, especially with POTS, but I can't imagine raising a child with POTS either...

Take care and keep up the humor, Janie

When I have a POTS flaire I will often experience "coat-hanger" pain. An intense pain along my upper-back, shoulders and back of my neck. It amazes me how sudden and severe the pain is. But once the flaire passes it completely goes away.

I have this coathanger pain also, but when I was being evaluated by a physical therapist she found that my thoracic spine is very stuck/tight all the time. She explained that the sympathetic nerves run right behind the thoracic spine, and when she worked to relax it I noticed a decrease in symptoms (especially the burning skin pain, chest pain, and other adrenaline issues). This relief only last for a few hours, though. But I already have mild degeneration of my thoracic spine from recent scans. Mostly, I really need to stay hydrated, avoid stress, and this seems to keep the worst of my upper back/body pains away.

Thank you for saying what dysautonomia has made me realize; that our loved ones are precious and they make our efforts to give in spite of our illness worthwhile .

If I stand and have my arms by my sides, I definitely have blood pooling in them, and yes, this gets uncomfortable.

Rachel

Yes, I can't stand letting my arm dangle while checking BP. I try to stand/sit by a counter or surface that I can lay my arm on while it's being squeezed. I think you get a more accurate BP reading that way, anyway.

I wish I could enjoy coffee! Giving up caffeine was one of the bigger bummers of POTS for me . Too much increased adrenaline-symptoms (flushing, tachy, pounding heart while laying down, abdominal cramps, big D, etc.). It sure does make me feel more awake, though. Just not worth all the side effects. It sounds like many of you can still enjoy caffeine, so that's great!

I did enjoy the poem

Glad to hear that today was a better day, and that your coworkers were concerned about you.

do you ever wonder how you make it through some of these bad spells? Is anyone else just totally frustrated?

Yes! It seems like my symptoms are just becoming bearable when something else sets them off, whether it's a virus, stress, or nothing at all! I really appreciate the days when I have the energy to do a little more, but on the bad days it's hard to not get depressed .

Hang in there! I've read other posts about your difficulty working while dealing with POTS. Don't know how you do it!

Janie

The sweetest thing happened too though--one of my my more impaired students saw me and as they turned me around to wheel my chair out backwards over a bump, he saw it was me, and said in the sweetest, most genuinely concerned voice "Feel better miss Nina, I hope you're okay tomorrow." I'd have started crying but the grownups were all eyes!

Oh, I'm sorry it was such a tough day yesterday! It's so hard to have to deal with an exacerbation of symptoms, but then when you have to deal with it in front of so many people that makes it much more difficult. My husband is a special education teacher, and some of his students remind me of the sweet, thoughtful child who encouraged you. I hope today is a better day!

Janie

I can totally relate! Last month I was with my mom at her carcinoid syndrome support group. It's normal for everyone to share their "story" but it makes my mom nervous which causes carcinoid flushes. So she asked me to speak for her. I know most of these people, and this wasn't a high stress situation, but after a minute of talking I found my hands shaking so that I had to hide them under the table. My heart was pounding, face flushing, and I was having a hard time keeping my breath even between sentences. After I was done speaking my mom knew something was wrong, but I just excused myself to the bathroom, knees knocking and all.

Almost any type of prolonged speaking (more than 5 minutes, even on the phone) will set off some degree of this reaction in me. I've been at my primary care doc's for a routine visit and by the end of the visit, I'm applying cool cloths on my face and neck and she's checked my temp which often goes up one or two degrees since the beginning of the visit, just because of the minimal stress/talking during the visit.

My elevated norepinephrine levels at Mayo just confirmed for me that this is a mainly physiological reaction. Unfortunately, I feel so tired after one of these adrenaline rushes. I'm sure you guys can relate. I am not an anxious person! But knowing my tendency toward these surges tends to make me anxious, unfortunately!

I can't work because of my POTS symptoms. I'm an RN and the mental stress alone would put me over the edge. Yesterday I spent an hour helping my mom book airline tickets online and felt crappy for the rest of the night !

I have a long-term disability policy that keeps paying, for now. I just got back from Mayo so hopefully the abnormal tests and doctors notes will be enough to keep them paying. I've been denied SSDI twice, but it's my LTD company who is applying on my behalf and they never send in all the documentation of my illness! So frustrating! So now my case is going to an attorney. I'm not looking forward to the stress of a hearing. And Oregon is one of the most back-logged states with the highest denial rates.

Either way, I cannot work! So, we're putting away every dollar just in case I lose my SSDI case and the LTD company decides not to pay anymore. Some people with POTS/dysautonomia have had to move in with family because of their financial loss and inability to care for themselves. It's so sad that sick people have to go through all this. I'm so thankful for my husband and his teaching job. We're not rich, but we get by!

yeah guys terrible stuff happening down here now. Pretty much a third of the state was on fire. The death toll is pretty high - 130 people plus. A lot of people live up in the hills around Melbourne and unfortunately the bad winds and hot, dry winds wipped up the worst fire in history. In a lot of these areas unfortunately there is only one road out and in and many were unfortunately killed either in their houses or in their cars trying to flee.

The stories coming out are terrible and pretty much beyond belief. SOme terrible things happened up there unfortunately.

Sorry this is off topic - actually my first post was as well!

I hope you can stay safe! And cool!

Maybe we could start a sick person mafia! We will kick all mean medical peoples butts!!!!

I love it! I'm an RN, and if God ever gives me the ability to work again I will have a totally new perspective. I think I've been pretty compassionate in the past, but there's nothing like going through it all yourself. Janie