gdomaracki

The past few days have been quite rough for me, the usual blacking out can't breathe potsy episodes. But last night came as a shocker to me and I'm looking for reassurance that it's normal. I woke up around 3 am with a sort of dull chest pain in the left side. Now I've had chest pain before and it never was much of anything, maybe my GERD...This continued for another hour but as time went on, when the pain would come back I would get some sort of heat flash. When I would try and get up my heart would take off like it was in a marothon. I eventually made it over to my moms room and thats when the tremors started. After another hour had passed, it was like my body began to calm down and the pain subsided. I still have some discomfort, but nothing like last night. May I mention, this was not a panic attack as many would look upon and say...definately brought on some anxiety, lol. I was thinking I was having a heart attack or something. It was terrifying! :0 Does this sound familiar to anyone? I really need some imput on this one to put my mind and nerves at ease.

I do believe that because midodrine raises your blood pressure, your heart rate decreases because it does not have to compensate for orthostatic intolerance. I would have that checked out by your doctor though, because 30 bpm is an awfully low heart rate. I have noticed that my resting heart rate is slower also, but trying to sleep at 100 bpm can never be comfy! Nicole.

I've actually heard of this before. Brushing your teeth, even without pots syndrome, can trigger tachy like symptoms. They noticed this with me because I was having some serious tachy in the morning and wanted to know if i was brushing my teeth. Unfortunately, I wasn't but... I never ceases to amaze me what can set our bodies off.

Thats wonderful dear. Its the small things that mean the most, and so much more to those who strive to achieve it.

Amy~ I know what your going through, this is my first summer with pots and I am more symptomatic then ever. As if thats possible, lol. As far as advice, all I can say is that I try to keep my fluid/salt intakes up, get plenty of rest, stay cool, and don't overdo it. (Which is hard for me to do, because I feel like I am missing so much) I have been inside for a whole week and a half because it has been nearly 90 and humid.

Thank you all for your wonderful advice and for sharing your stories about your sleeping trouble. It is a shame that they can't do anything really to help us with this but I am definately glad that I'm not alone. Makes things not so scary for me. As I do sleep alot, it does take me a good hour to fall asleep or maybe more depending on if my heart is racing or not. And when i do fall asleep, I am easily disturbed and awoken and I can't sleep for more than 5 hours at a time at night. I will wake up, get a drink, and wait around till I get sleepy again. Very odd. Thank you again.

HAPPY BIRTHDAY WAREAGLE!?! hope you have a wonderful day, with many more to come. best wishes, nicole

Goodness Willow, thats a terrible experience for anyone to have to go through. And one of my biggest fears. Just knowing that someone is inside your home, the place where you feel safe and secure, just gives me the hebbie jebbies!!! I am pleased to hear that you and your family are alright, and seem to be dealing with this experience quite well. We tend to forget about locking things up, especially when the warm weather is in full gear, I do this myself and this is a good reminder not too. Glad you are all alright! Nicole.

As odd as this sounds, I'm going to ask it anyways. Is it normal for people with dysautonomia to sleep SO much? I had been doing really well until about a month ago with my energy levels, and I had even started to do some exercising that my doctor had reccomended. Now, I'm back to sleeping 10+ hours during the night and on top of that I am taking a nap in the afternoon. If I don't, I end up feeling ill in the evening. The even crazier thing, is that when I do sleep, I feel even MORE tired than before I laid down?!? Does this happen to any of you? And my memory fog...its just frustrating! Anyways, I just wanted to clear with you guys that this chronic fatigue is normal and if there is anything I can try and do to help relieve my symptoms. (I upped salt/water already) Thank you for advice! Enjoy your *Memorial Weekend*!!!!

Happy Birthday To You, Happy Birthday To You, Happy Birthday Dear *RACHEL* Happy Birthday To You!?! ~Hope you have a WONDERFUL day, free from sx's and worries. Full of joy and CAKE!

I know what your going through deary, i am going through much of the same thing right now. Its even more difficult feeling this bad, and then having no one there to help you or to take you seriously. I do hope that your pcp can bring you some relief, and do know that you are not alone on this one. Hang in There! Nicole

Just an update about my possible ulcer and some questions about GI track problems. I did go and visit my pcp today to discuss the pain that I'm having associated with this stomach ulcer. They placed me on the prilosec otc to try and reduce acid. Then they added in metoclopramide, which will help my food digest faster since I am also having problems with dsyphagia. I am also having an upper GI done with the barium to rule out nutcracker syndrome and/or zollinger syndrome. Out of curiosity, how many of you have problems with your GI track? Is it POTS related? What should I expect out of my barium test? Will it make me more symptomatic? The more information I can get, the better because I can definately tell that my GI problem is making me much more symptomatic, along with exhaustion. (15 hours a day of sleep) Thank you again for all your input and advice! Thank goodness for my WONDEFUL pots family. Nicole

My ulcer, or so they think it is, has calmed down ALOT except for some pain the other evening. I still have discomfort and its very sensitive. I do plan on making a doctors appt tomorrow just to have it checked out. thank you all for your advice!

A few weeks ago I went to the doctor about some stomach pain that was causing me severe discomfort and nausea. They suspected a possible stomach ulcer, so they placed me on a prescription dosage of an anti-acid to try to eliminate the acid that was irrating me. The pain stopped, so I thought it had healed. Well, the other night I went to lay down and this piercing pain errupted in my upper stomach area, right above my belly button. Along with it came EXTREME heartburn, vomitting, spitting up, nausea, it almost hurt to breathe the pain was unreal. After about an hour, it started to settle but ever since then I have had this pain in my stomach. Foods do tend to irrate it, so I am avoiding any fried food or things of the sort. Does this sound like a stomach ulcer? What can I do to illeviate the pain/irratation? Thank you all for your input and advice! Enjoy your weekend!

Im going through the exact same thing, for like the past two weeks and it is really frustrating me. I would first try increasing your salt and fluid intake. The midodrine can really help with your exhaustion, especially if your blood pressure is low. The only consideration is that once you take your midodrine, you really shouldn't lay down because of suspine hypertension. (lasts 3-4hours) I would try sitting upright in a recliner or something of the sort. Right now though, my midodrine isn't working up to par. I passed out while sitting up in a car after I had taken it. I do hope you find some relief from your symptoms, let me know what you find helps. Nicole

CONGRATS!!!! Doesn't it feel good to do something you once thought impossible, yet when you were healthy seemed ever so easy. I've learned to appreciate the small things, because they are what keeps me holding on.

I wouldn't reccomend drinking, especially if you have blood pressure problems because alcohol is notorious for making your blood pressure lower. This would explain why you would get really tired, sleepy.

Thank you so much for your advice and support. Im definately planning on researching and learning as much as possible before applying, so I can get it right the first time. Much love, Nicole

My goodness, how painful it is to watch our little ones in such pain and not be able to do anything. My heart goes out to you and your little boy, may the doctors be given the knowledge to help your child. Strength for both of you, that hope and faith will percervere and in time healing. Your in my thoughts and prayers.

Its time for me to apply for ssd/ssi and i need your help! I've gone ahead and taken a look at the provided information on these topics but it would also be good to hear your advice, since I am doing this on my own and basically want to avoid the hassel and get it right the first time. Any suggestions for me reguarding applying, lawyers, etc. Personal experiences would be GREAT too. Thank you for all your help with this! This is going to be alot for me to do.

IST was my original diagnosis after NCS, but when my symptoms just didn't match up my cardiologist suggested POTS and sent me to a pots specialist. I would definately recommend seeing someone specifically trained in this area before having any ablation work done, bc like mentioned it can make it worse and luckily they ended up cancelling my appointment to have it done. Best of luck! :smile

Allergy Season is here and worse than ever. Normally I wouldn't hesitate to take something, but now with pots syndrome I'm a little worried as far as the side effects. I do have an appointment with my pots doctor in a week, but for the time being I was thinking about taking something over the counter for the time being. What experiences have any of you had? Any suggestions for me?

Well, to begin I have been doing really well the past month or so without any real BAD spells. And my tachacardia has been at a bare minimal. That all changed this week, and I'm not sure why but it's got me down in a POTS-hole again. Now I am having problems with insomnia because my resting heart rate averages around 130 bpm, and wakes me up numerous times throughout the night. Then, last night, I went out for my birthday and seemed to be doing fine when I started blacking out. Needless to say, I can't remember much but of what I do, I wasn't fun! I guess I just really need to vent because I'm really frustrated with all this potsy stuff and this being my first birthday with this illness is really getting me down. And just when I think I'm doing pretty good, something like this goes and happens. Oh what it would be like to not have worries like this, and to just live again without limits. And yes, I do understand that things could be alot worse and I'm thankful that they aren't but to enjoy the things that I once did would mean so much to me. Of course because of last night, I'm going to spend today (my bday) and probably part of next week recopin' What a wonderful birthday present. Thank you for listening! I love you all so much.

It does take a little getting used to, but if it helps thats its worth it! I have definately seen an improvement in my orthostatic tolerance along with having a little more energy. Which is ALOT for me Hope it works for you!

Claire~ Thats absolutely wonderful! I know what a joy it is finding a doctor that understands your condition and is able to help treat you.