khaarina

Same thing happens to me when I read aloud. I don't know what exactly causes it but I suspect it is dyautonomia.

"I have had so many weird things happen that I've told my dr about & he usually looks at me as if I was an alien."

LOL same here. After making this post I looked more into siezures because my grandmother was diagnosed with epilepsy as a young adult. I found some other symptoms that have me wondering if I might be having siezures while sleeping. I have a lot of sleep problems that I have just assumed was part of having POTS, but some of my symptoms are eerily similar to those of epilepsy patients. For example: I bite my tongue in my sleep, I wake up a lot in the night, and I when I wake up in the morning I feel like have been wrestling all night. I joke to my husband in the mornings that I have to recover from sleeping, which of course sounds rediculous but it is exactly what it feels like. Do you know if epilepsy has any connection to POTS? Any one else here have, or suspect you have siezures?

Almost every night I get a taste hallucinations--tasting something that isn't there. It lasts about 10 seconds or so and it is very specific, fruity pebbles, beef and noodles, metal, etc. I'm never thinking about food when it happens, it just hits me, and it is not a craving, just a sensation. Does anyone else here get these? Do you think I should be worried?

I am thinking about buying a pulse oximeter to try and find out if I have sleep apnea. They run as low as $20 on Amazon so I figure it can't hurt much to try. I did a proper sleep study once, but wasn't able to sleep long enough to get any real results. Has anyone else tried a do-it-yourself sleep study? If so, did it work?

Reading a good book

Lying down, even if I don't want to

Laughing about my ridiculous physical limitations

Drinking tons of water

Eating fresh fruit

Taking breaks, lots if breaks

Getting out after being stuck at home for a long time

Fresh air

Watching a movie with my husband

That's the trouble, it is all too easy to hide because we don't look sick. If you are like me and you don't like to appear weak then it is easy become isolated in this illness. What I have learned is that we all need one person we can talk to about how we are feeling. It can be a parent, a spouse, a friend, a therapist, it doesn't matter who it is as long as it's someone you can be totally honest with. I talk to my husband. I try not to flood him with all my symptoms, theories, and frustrations because he is human too and I don't want to overload him, but I no longer lie to him about how I am feeling. I used to, and it would build up inside me and lead to severe bouts of depression. People are not built to be alone.

I get this every day. I eat salty foods and drink plently of water before bed and as soon as I wake up, then I just lay there or sit with my feet up until it gets better. It takes a while and it is very frustrating, but it eventually gets better. If only we could have an iv pumping fluids into us every night.

Great article Jackie M. I just sent an email to the health and wellness writer of my local paper. If we all did this we could really open some eyes about POTS. Thanks for the idea!

It's an easy way to end an argument with my husband, lol. I just have to say, "You're making me sick," and argument over, because we both know that when I get stressed my symptoms go through the roof. Over the past two years I have pretty much wrapped my life around the idea of living stress-free. I had no choice.

I tried thigh highs but they didn't fit right and when I wear knee highs I just pool in my thighs. Compression stockings are so frustrating! I would suggest trying whatever stockings you can get ahold of at local stores that accept returns easily. I ended up returning almost all of them for one reason or another. Even if you don't find what you need and have to turn to the internet, you will have a better idea of what you need then. Compression gloves might help your son too if he pools in his hands. I just ordered some so I don't know how well they work, but it was much easier to find the right size than with stockings and they are cheap.

So based upon what I've learned so far about POTS, I am pretty sure I am not going to drop dead from my illness any time soon, but every day I am faced with the question: How much is too much? Exercise makes us sick, but lack of exercise makes our conditions worse. What do you do with this? My doctor doesn't seem to have a clue so I would like to get your opinions. Do you think it is safe to force ourselves to exersize? How much is too much? It can't be a good thing to have high/low blood pressure and lack of blood flow to the brain and other organs, but could we actually be causing permenant damage to our bodies when we push ourselves to do things that are hard for us to do? Or is it worse to let ourselves become deconditioned?

When I nap, I feel awful for the rest of the day. Lying down without falling asleep however, helps me a lot. I have to do this several times a day. I have a lot of sleep problems. I stuggle to fall asleep and usually am awake until dawn. Some nights I don't sleep at all and even when I do sleep I feel like I didn't sleep soundly. Also, I am pretty sure something happens with my blood pressure when I am asleep because when I wake up I am very weak and fatigued. I can't even make a proper fist until I have been awake for at least ten minutes. I joke with my husband that I have to recover from sleeping. It sounds ridiculous but it is true. I suggest letting your son nap if he needs to. If he is already stuggling to sleep at night, I doubt napping is going to make it any worse. If napping makes him feel bad, you could just have him lay down and rest for an hour or so. Of all the medications and other treatments I have tried, lying down helps me the most.

I don't know what the connection is but my grandmother had problems with circulation and stroke and she was diagnosed with epilepsy when she was young, who knows if the diagnosis was correct. Also, my son has almost passed out a few times and he gets weak and fatigued a lot especially in the heat. I'm pretty sure both my grandmother and son have some sort of autonomic dysfunction.

Yeah, getting diagnosed and treated for POTS is really hard. Most doctors just don't understand autonomic disorders. It took my docs over a year and a half to start thinking about POTS. Before that they were clueless. They just kept putting me though test after test and sending me to specialists. I found out a lot about all the illnesses I don't have. Then out of nowhere my primary doc just figured it out and told me to get a ttt. It looks like you have a head start, but it will still be a long road. Everything about chronic illness seems to take forever. We are always waiting to get into see a specialist, waiting for a new medication to work or fail, or waiting to get test results. Try to be patient, but don't stop persuing the right diagnosis and treatment. I don't know how the health care system works in the UK but if you can avoid it, don't stick with doctors who aren't helping you. I made that mistake a few times and it slowed down my progress a lot.

I've been disabled with POTS for two years and two months now. I had to stop working and quit college with just a few classes left. My husband has taken on all the errands and he and my two kids do most of the housework. Not being able to work has made it difficult to continue my search for better treatment options and I often can't afford things I need like compression stockings and medications, but I work with what I've got the best I can. I didn't drink much alcohol before I got sick, but it is out of the question now. I had recently moved to a new state when I got sick and did not yet have any friends. Now it is unlikely I ever will. Being sick and having friends doesn't go well together. I get cabin fever a lot. I can go to movies, but that gets expensive. Sometimes I go with my husband to the grocery store or the mall, but I usually end up on the bench waiting for him to finish up. I have heat intolerance and live in Florida, so summer is the worst. Most days, I have to just lie around and try to keep my symptoms at bay. I read a lot. I watch tv, play video games, etc., but screens hurt my eyes and give me headaches, so even those things are difficult to do. I deal with a lot of emotions because of my illness, mostly hopelessness, insecurity, and feeling useless. I don't talk about it much to people in real life because I don't want them to see me as useless.

So that is basically how my life has changed thanks to POTS. I know it sounds depressing, but not everybody with dysautonomia gets it this bad. Even if you do, you will adjust. People can adjust to just about anything. For a long time I thought my life was over, but after awhile I started appreciating the little things like watching tv with my husband and hanging out with my kids. Now that I am pretty sure my condition is not going to get better any time soon, I have started to make new plans. For example, I am thinking about finishing my degree online and I am looking for an affordable wheelchair so I can do more things like go to museums, zoos, etc. There is a comic con coming up in my area and I have always wanted to go to one, so if I can get a wheelchair in time I will get to go. The trick is making sure you have something to look forward to every day, small things at the end of each day and long-term goals too.

I got on birth control pills to "balance my hormones" because my POTS symptoms were so much worse around the time of my period. I forgot to renew my script so when it ran out I had to wait for my next period to start the pills again. Many of my POTS symptoms and apparent hormanal symptoms got worse (not just during my period) and I realized that I probably have a hormonal imbalance and have probably had it for years. The hormonal symptoms started at least 5 years ago, and I am wondering if it was caused by the Essure procedure (a permanent birth control method where coils are implanted in the fallopian tubes to block them) I had done 8 years ago. I have a feeling this is all connected but have no way of knowing for sure.

I have been diagnosed with POTS and based upon my symptoms (high bp when standing, insomnia, etc.) I believe it is Hyperpots. My treatment plan is helping a little but I am still totally disabled. I have been reading a lot about Clonidine and I want to ask my doctor to put me on it and see if it helps. Those of you who have tried Clonidine, what was your starting dose and what time of day did you take it? Did you experience any side effects? What other meds did you tae with it? I am taking Midodrine 2.5mg as needed up to 6/day and Metoprolol 12.5mg 2/day, can I take Clonidine in addition to these, or would it replace one of them? Any other information you have about Clonidine and POTS would also be greatly appreciated. Thanks.

Does this have to be done in person? I'm worried about my ability to respond well since I get major brain fog when I am upright for very long.

I filled out the application and the dissability report with information for all the doctors I've seen since my symptoms began, the meds I'm taking, and my work history. There was no place on either of those forms to talk about my symptoms, how my condition limits me, or why it prevents me from working. Does that come later? The website wasn't clear about what comes next, it just said to wait for someone to contact me.

It is normal for the heartrate to go up when a person stands up, then the body is supposed to compensate for gravity and regulate itself. Does his heartrate stay up or get higher after a few minutes of standing?

I had the same problem. I went to my doc and told him I wanted to stop my menstration with birth control pills. He said he didn't think stopping the menstrual cycle was necessary, but that taking normal bc pills should help regulate my hormones, preventing the huge swings which triggered my POTS symptoms. He was right. I still get a period, but my POTS symptoms no longer get worse during it. Something you may want to consider before trying iv saline if you haven't already.

I have only recieved saline a couple of times since I've had POTS and that was when I went to the hospital. I didn't know I had POTS yet, they just did it because it was protocol I guess. I think it is a great help for major attacks. It helped slow down my heartrate when nothing else could at the time. If it were easy and cheap and safe I would do it every morning, because I truly feel like a dried up raisin when I wake up in the morning. Salt and water help though, it just takes a few hours for it to have any real effect.

Funny thing about that last question:

Who suspected that it was possible dysautonmia first?

It was my first Cardiologist that suspected it first, but he never followed up on it or even told me about it. I found out later when I requested my medical records from him. He had written "possible POTS" in the notes from my first visit with him. I could have been diagnosed 6 months after my symptoms began rather than a year and a half and a million tests later.

The veins in my hands and wrists get really bright when I am standing, especially in the shower or at night when my Mididrine has worn off. Do you think this is because of pooling or high BP? Also, do you think it is a bad sign that this particular symptom has gotten worse over the past couple of months?

I'm looking at this prep sheet for gathering info and it is asking me about the docs I've seen and the tests I've had. Should I include all twenty-something docs I've seen in the past 2 years while I was trying to get a Dx, or just the ones since my Dx? Also, I've had hundreds of tests done, most showed nothing, should I still report them?

Been too sick to work for 2 years now, I think it is time to suck it up and apply for disability. I think I should qualify for both SSD and SSI. Any tips or suggestions from those who have been through the process?