pink1975

My mother is the only one who believes me. Other people keep asking if I am feeling better, or tell me "You don't look sick!". Many suggest my attitude is the problem, that there is no real illness. I get harassed for bringing a service dog on the bus because, obviously, someone that looks normal can't possibly be disabled. People have yelled at me for this. I left the bus sobbing today after a terrible run-in with the bus driver, who tried to drive off and leave me stranded. I was numb with disbelief afterwards.

I have a friend who while she believes that I feel sick always says "But you look so good!". At least we get to look awesome while feeling so crappy! I have another friend who gives me a look like "yeah right" when I tell her how I feel. I think that it is impossible for people to believe that you are feeling poorly if you look good, that's just the way most of us are taught, sick people LOOK sick. If you are sick, you get thin and pale or lose your hair. Another friend of mine who is young and good looking has Parkinsons. She has a service dog that she brings everywhere. When I first met her, I thought she was just being quirky by bringing the dog along with her everywhere. Turns out, her dog calms her enough that her tremors are almost invisible. Luckily, I am not ignorant enough to have actually said anything about her dog, especially before I had any clue what he did for her. Just try to remember that the people who say stuff to you about your dog are just plain ignorant!

Pink 1975 I am so sorry to hear that your husband is treating you that way. This illness is so awful and someone talking to you that way is unacceptable. I cant image a love one telling me to knock it off and get up off the floor after I fainted. You should be proud of all you accomplish in a day. Right now, I could never have completed all those tasks. Many people with out an illness are not motivated enough to do all those activities. I have lost many friends due to this illness. Many people just do not understand and never will. After awhile, I have decided that I don't want to be around the negativity. It would be so hard to be in a relationship with someone like that, someone you have to be around every day. It just breaks my heart that you are treated that way. I don't know how to correct your problem. However, would he be receptive to the suggestion of couple counseling or therapy. Also, does he ever go to doctor appointments with you? In my experience (15+ years of Pots) the more knowledge people have about this illness or any illness, the more understanding they are. I hope your husband begins to understand or at least learns to appreciate what you do for your family. I hope you have a family member or friend in your life that is supportive of you. My prayers and best wishes go out to you.

Yep, he's a big butt when it comes to understanding any of this. He went with me for the tilt table test but didn't go in the room. I failed it in sixty seconds so that should have been a clue for him, but he was just happy that we got to go home earlier than they told us. He is hanging on to the original anxiety diagnosis that I got years ago. So, his reason for my failed test was that I just "freaked out". I agree with you that many people, not just our spouses have no clue what POTS is like. Maybe someone should invent a POTS simulator that we could make people try to show what it is like.

I have been sick for many years (at least 13, since I started to get sick after my first daughter was born) and along the way have picked up diagnoses of asthma, allergies, celiac, fibromyalgia and now POTS. All along the way I have been doubted by my husband. He tells me it is all just me "freaking out", his way of saying I am having a panic attack since we all know that panic attacks are cured through antihistamines, asthma inhalers, and a gluten free diet, lol. The couple of times I have actually fainted due to POTS, he just tells me to knock it off and get up off the floor. Last night, after fighting dizziness and brain zaps all day, I was particularly exhausted and couldn't go on another minute and had to lie down. This was after a full day at work, taking my daughter to ballet, going to the library, taking the kids out for ice cream, cooking dinner and helping my daughter make an easter hat for school. I put the kids to bed and told him I was exhausted and had to lie down immediately and he said "or just lazy". I am positive he will never get it. I wish there was a way to bestow our symptoms on others for exactly one day to show them what it is like.

Just piping up to add a me too! At least 3 times a week. I didn't realize that it could possibly be from POTS, lol.

Hi Pink, i think the salt and fluids is kind of a trial and error to see what works best for you. As for salt, Mayo recommends 10g. I probably have around 2g. It is difficult to get that much salt from your diet--thermotabs can be bought online and can help with getting enough salt in. I preferred to just mix salt with warm water and take it like a shot--it seemed to work better for me and is much more cost effective than the thermotabs. I also drink water all day. And if an attack is going on i chug a big glass of water at least 16oz and it helps me within 5-10 minutes. I would guess i drink around 1/2- 3/4 of a gallon a day of water. It is hard to get used to at first, but after awhile you get used to it and miss your water when its not there. If i am urinating frequently, which happens at times, i switch to a different fluid with more substance like juice or milk. I am sorry that you came down with POTS, but glad that you were able to get a diagnosis. Water and salt are usually the first lines of defense, and if those don't work, medication can be added to the mix. Some people find relief with beta blockers, florinef, and SSRI's. And it is important to remember that POTS isn't just heart rate, it can affect pretty much anything so try not to panic if weird feelings and things start happening to your body- like out of body type feelings, adrenaline rushes, time speeding up/slowing down, vision changes, anxiety, chest pains, shortness of breath, tingling or numbness, sweating, weakness, fatigue, exhaustion, headaches, overstimulation(sometimes it feels like your brain is going to explode from too much information when music is playing or in a crowded room) lightheadedness etc. Also, understanding your illness and knowing your boundaries can be very fruitful if only to say, it's ok, this is just my pots.

Another thing you will experience is probably frustration because doctors can't really help us other than prescribing medication that only kind of works. Also, Dr.'s work for insurance companies so sometimes you are going to have to push to get tests done --even argue. If a doctor ever tells you that you don't need a test, i just reply, how do you know, no one knows what causes this and a lot of underlying conditions can mimic this disorder. Not sure what you have had done so far, but if you have insurance,(IMHO)you should at least have an Echocardiogram, holter monitor and event monitor just to ensure that your heart is functioning properly--if nothing less than for peace of mind to know you aren't having a heart attack etc. Also, checking things out like thyroid levels, the Brain (MRI) to rule out any brainstem problems, plasma and serum catecholamines(to rule out pheochromocytomas ) along with periodic metabollic panels to check out your levels can be useful in ruling out other diseases. Additionally, ruling out neruopathy is important to limit any ongoing nerve damage. Always, though ask a Dr. as they are the professionals.

Something i wish someone would have told me right when i started getting sick is to recognize that life is going to be different from now on. I spent a lot of time and tears trying to come to terms with that. However, if you recognize that this is the way it is going to be, it gears you up for coping and maximum functionality. A lot of people who get this start losing their functionality quickly, and it is important in my opinion to keep trying and keep your stamina up where it is. Because once you lose it, it is 100X harder to get back to that place with pots piggy backing along with exercise and activities. Pots is kind of a catch 22 because all you want to do is lay down to remove the stress from your body, but prolonged bed rest exacerbates symptoms. For me, i push when i can, and rest when i can't.

As for menstruation, it is normal for symptoms to exacerbate during that time. Mine start kicking in with ovulation.

Things to avoid: Garlic, anything that is a diuretic like coffee(though a cup of coffee in the morning is said to help symptoms), alcohol, stimulants, and meals high in sugar(gatorade has lots of sugar and caused this issue for me) as they can lower blood pressure and affect adrenaline levels.

Thank you for your informational post. I have experienced many of the additional symptoms you talk about, not just the tachycardia. Right now I am sitting here with a wicked case of brain zaps that I am convinced have to be caused by POTS. I also get adrenaline rushes, odd vision (like things moving that I know are not, such as people's faces being wiggly), wicked fatigue, shortness of breath (some days I can barely walk from my car to my house), and overstimulation (going to the movies is a real trip, I had a total meltdown from the last Breaking Dawn movie, couldn't stop crying for over a half hour, but then again even the Muppets movie made me cry). The good thing is all this stuff used to make me panic, but now I just tell myself its ok, its just POTS. I have had all kinds of heart tests and my heart is good so I know that I can just wait it out and it will be ok.

Don't be embarrassed. A couple of months ago I had to leave work by ambulance and spent several hours in the emergency room. I was so embarrassed and was apologizing over and over for wasting their time. I thought I was just having another "panic attack" which is what everyone always told me was my problem. There was a super great EMT that told me to stop apologizing because nobody causes this on their own. Hope you feel better!

About a month ago I finally got a POTS diagnosis through a tilt table test. I stayed upright exactly sixty seconds and my heart rate was 170 when they stopped. It felt like all the blood in my body was trying to leave through my feet. Worst test I have ever had and I have had quite a few as most of you have probably experienced too on this odd journey.

ANYhow, I have a couple of questions. My cardiologist said to eat salt and drink fluids. How much salt? How much fluids? Also, do your POTS symptoms worsen in relation to your menstrual cycle?