Meg.Limbach

that just *****. =( my marriage is on the rocks, not entirely due to POTS but a large part. I have decided I would just rather deal with this alone than to have to rely on a man to help me. Chin up, buttercup!! Know that it isnt YOU its this stupid disease =( .. Relaying to your sn.. are you in Colorado or just a fan?

I have horrible night sweats all the time. I sleep with a box fan pointed directly on me on high, my ceiling fan on high, as little clothes as possible (I find t shirts disgusting cause I soak through them so I wear spaghetti straps), I take a cool shower and go to bed with my hair in a wet bun, and sometimes even wrap large ice packs in a thin towel and place them on my legs, stomach, and forehead. All these have helped quite a bit. I hope you get some relief soon.

My cardiologist mentioned Fibromyalgia, but said I needed to have that diagnosed by my primary. I have an appt next week. Just curious.. how many of you suffer from Fibromyalgia as well? What do you do for treatment?

thanks everybody! I will def be looking into these options =)

I have found I have a hard time controlling my body temperature. I know most have problems with the heat.. but when I get overheated, I start running a fever. If I get too cold (which is rather rare) then my body temp drops. Do any of you have this problem?? Also, for those who have used cooling vests.. which brand and type do you recommend?

I also have problems swallowing.. its like for 3 months or so I can swallow up to like 5 pills at once, then all the sudden for a few more months I cant even swallow one. Its rather odd. I recently had an endoscopy because of it, although havent gotten results yet. So I am absolutely not help. But know your not alone!!! =)

I have taken Topomax on 2 different occasions (about 10 years apart) and have had to stop it because the side effects were so awful. My forgetfulness was absolutely ridiculous.. I would be driving somewhere, then all the sudden forget where I was goin. It was rather scary. Another horrible side effect was the tingling in my hands and feet. It would get so bad I would cry. I have had Complex Migraine Disorder for 8 years now and although Topomax did help with the migraines, it just wasnt worth the side effects. I was on in after being diagnosed with POTS but didnt notice any changes in the POTS symptoms.

I just reread what I wrote, and it sounds like I was saying yours is ugly! not at all, I love yours, I was agreeing that all the other hr monitor watches are ugly. Just wanted to make sure that was clear lol. If you wouldnt mind saying where you got it and how much id appreciate it!

What kind is it? I have been looking into getting one, but i agree, ugly! Also how much was ur james avery id bracelet??

gained over 100 pounds in one year =(

welcome to the board. there are some amazing people here. I am a "newbie" myself but have found it to be very helpful. Where in TX are you? I am originally from Dallas area but am currently living in CO. I completely feel you on the wheelchair issue, we have started the long journey of deciding to get one or not. I am sorry your family isnt more understanding. I hope you find relief from your symptoms soon and can get your doctor situation solved.

This is my 4th colonoscopy.. but first with POTS. I might request general instead of twilight (I have woken in the middle twice, blah) I believe mine is in an outpatient clinic but within walking distance to the hospital. I will def be wearing compression hose. Thank you!

I am not a big fan of salt or sports drinks (***** for me huh?) What are you favorite high sodium foods? Anyone have any good recipes that actually taste good with lots of salt? I also read that for those who have lots of pain with POTS should avoid MSG. Is there anything else yall cut out of your diet to help? I have gained over 100 pounds since POTS (wish I would have gone the other way!).. any tips for losing the weight since exercise is practically a no go for me?

I recently asked my cardiologist if I should go in when I pass out and he said theres really no reason to since nobody will "know what to do with me". I havent passed out in several months, but for about 3 months I was passing out nightly. I could be out anywhere from 1 minute to 2 hours. I dont really feel comfortable with not going in, just follow your gut. Maybe get an at home bp and hr monitor so when your out someone can record your stats. Stay strong hun, syncope is one of the most scariest things I have ever experienced and I know its scary for those around us.

I am having my colonoscopy in a few weeks. I have read before that anesthesia can really mess with POTS symptoms. Any advice? I am pretty nervous about it as this will be my first time "under" since I developed POTS.

I'm in the same boat myself Agreed. My poor husband.

I was feeling down on myself yesterday shopping with my mom for school clothes for my son because I had to use a wheelchair. My mom said she would give anything to be able to shop and have someone push her around the whole time lol. My son also enjoyed getting to "help" mommy by pushing. Although I saw it as a bad thing, it really was nice to have that option to go out with my mom and son. =)

my muscles and joints hurt all the time. my cardiologist suggested it was fibromyalgia but I have to get with my primary for a diagnoses.

tea does the same for me. how weird. I love love love sweet tea but will only drink it if I know I am going to be at home lol. as for the original post.. I have been in the ER twice for severe abdominal pain (and for me to say its severe its comparable to kidney stones or childbirth) both times I was just "stopped up" .. they didnt do anything for me but to let me "pass it naturally" .. it took days and it was pure ****. I hope yall find some relief. It truely is a miserable thing.

I just posted this question a few days ago. I am now 2 months late (and I have been pretty regular the past 6 months).. My doc has me on hormone therapy to try to jumpstart my period but to no success. I go in next week, so I might be able to give you some more insight then as to if POTS is apart of this.

What do yall do when you pass out? My cardiologist said to just wait it out since nobody in the ER would know what to do with me. I am ok with this, except sometimes when I am out I am out for 2 or 3 hours and my HR is either extremely high or extremely low. Also, who has worn compression hose? Did it help? My cardio prescribed me some since my legs swell very bad. If I just run into the store real quick, by the time I come out I have cankles. Has POTS affected your menstrual cycle? I am now a month late. We did a blood pregnancy test and it was negative twice. Nothing has changed medicine wise.. Aunt Flow just didnt show..

I have gained 100 pounds in less than a year due to POTS. Luckily my husband hasnt really said too much to me about it and tries to support me, but in my own head I am beating myself up. If you are doing 30 mins a day, I APPLAUD you!!! That is way more than I can do. I sometimes feel like I would be better off battling this alone too. If you wanna talk, you can message me. I am somewhat feeling the same way girl! Big Hugs.

When I was younger I was diagnosed with Complex Migraine Disorder.. because I would go completely paralyzed on one side of my body (it differed from one side to the other).. I may have to look this up now because it sounds like me to a T. I was just recently diagnosed with POTS. I now just have horrendous migraines without paralysis.

I will def have to look into the FB group. I am actually going to school so I can work in the NICU as well. Honestly, I was going to ask you how you manage with 2 kiddos? lol I am only surviving with LOTS of help! Without my husband and mother I dont know how the heck I could do this. I havent seen a specialist yet.. but I do see my electrocadiologist at the end of the month so he should be able to point me in the right direction. I have yet to start meds, but again, that will hopefully start after I see him. Thank yall for the warm welcome =)

Hello, I have been following this forum for a couple of weeks and am excited to become part of it. My name is Meg and I live in Pueblo, CO. I am 22 and I was diagnosed with POTS just a couple of months ago. I am married and have a 4 year old son. My symptoms started about 7 months ago where I would pass out for no given reason almost every single night. I was hospitalized all the time due to my cracking ribs, slamming my head, etc etc from the falls. They tested me for epilepsy (which I had been misdiagnosed with in 2002) and everything was coming back normal, except for my blood pressure averaging 80/40 and my HR averaging in the 40-50s. Until one night after I passed out, it was like a lightswitch. My HR did a complete 180 and I was rushed to the ER with chest pains. As I laid down my HR was in the 70s. As soon as I stood up within 10 seconds my HR hit 194. The doc said she had never seen a spike that quick so made me do it a few more times with the same results. Finally, in April I was diagnosed with POTS. I am having a very hard time coming to grips with this. I can not even walk from my bed to my bathroom without becoming dizzy, out of breath, and pouring sweat. My dear husband has been fabulous through this all, but sometimes I feel like he should just leave because he didnt sign up to take care of me 24-7. I am also in school full time for nursing, and that takes the 2 oz of energy I have so whenever I am home, all I do is sleep. I actually just woke up from a 36 hour binge. I just feel so alone. My mom is my best friend and is very understanding and helping in any way possible. But nobody else seems to "get it". I get remarks like "yeah im super tired too" .. it just irritates the crap out of me, cause no, they dont get it! Sorry for this novel. It just feels good to vent to people who do "get it" =) I look forward to getting to know all of you. Also, I have seen posts about losing appetites, have any of yall experienced massive weight gain with POTS? I gained over 100 pounds in just a year, and POTS is the only thing I can link it to. Thank you for listening. =)