MomWithPots

Excuse the title..couldn't think of appropriate wording I know sex is usually a private topic and I hope it's ok to post about it here, but I'm curious if anyone else has any issues. During intimacy, I experience symptoms such as numbness (legs and hands) and nausea. Afterwards I have episodes of shaking and I have a hard time getting my body temp back up..I don't see my husband much due to work and travel and with these symptoms it makes me want to avoid any relations at all. My husband is very understanding, But it still takes a toll on our relationship of course. He has even accused me of not being attracted to him and using my illness as an excuse..its frustrating for us both! Does this happen to anybody else? Any insight is greatly appreciated!

I haven't yet, but I have a doc appointment this week and am requesting one. Praying for some relief. I can deal with the other symptoms, but take my sleep away and things get ugly lol It was a hot bath, I know it's bad! It is just always so tempting because I have such a hard time keeping my body temp up..I'm one of the very few that love the heat and have been known to take my portable heater everywhere..The cold / winter on the other hand causes major flare ups for me. Our bodies are just so weird!

I have has this before! It usually occurs on my thigh and is hard to explain. Just one small area would get very warm for no reason..my mom also had MS...another wierd symptom! My body never fails to surprise me anymore! Let me know if you find any answers

My symptoms were getting a lot better the last few years but this year they took a turn for the worst and are now worse than ever! In addition to the fast hr, brain fog & leg cramps, I have also developed very scary episodes when sleeping where I quit breathing and wake up in a panic attack. I'm also getting these very quick and intense dizzy spells that come out of no where..I literally just had one in the bathtub and thought "oh no, they're gonna find me naked!" Maybe i'll find that funny later.. So I'm not getting any sleep and I'm feeling worse..this is leading to depression..my husband is a trucker and only home a few days a month (a week tops)..being sick and alone just makes it all that much worse. Feel like I'm batteling this solo and I'm just worn out! Don't really have a question. Just needed to vent I guess. Not many people understand! Sorry for all the negativity I can't help feeling like its so unfair to be dealing with this..selfish I know. On another note, I hope you have all been well!

Thanks for the reply! Funny you mention that, I tell my husband "oh no you dont" many times..sounds horrible I know, but when you feel bad sometimes you just can't help it! I have that same fear as well. Thankfully im not known to pass out *knock on wood!* but its still scary. I actually considered getting one of those medlife (think thats the name) buttons to wear in case something does happen since my kids are so young. That sleeping schedule sounds crazy! Does your symptoms get worse with exhaustion? I notice if I stay up to late ill have a major flare. Im also scared of sleep apnea..every few days ill wake myself up every 5 minutes bc it feels like my body forgets to breathe..ive aways assumed it was just another pots symptom. There is not another lump on the left side. Im hoping its just a lymp node so im trying to wait it out and see if it goes down...Lordy I just realized how screwed up my body seems to be Not sure why I found that ammusing lol, either laugh or cry, right? Hope things get better on your end! Sometimes it really helps just having another person who can relate.

Things were looking up for me this past year; I still had a fast heart-rate but that is normal to me..all of my other symptoms seemed to lessen if not vanish all together...until last month. It all started with what I call my "attacks." Now I have a few small palpatations daily but during my attacks my heart beats out of my chest and can get up to 200, it sort of feels like a fish is jumping around in my chest and I can't breathe and go into fight or flight mode. I had one of these attacks one morning (oddly while bending down to pick something up, it just set it off?) and with it came back all those annoying symptoms including dizziness, shortness of breath, brain fog, and extreme weakness..the weakness come out of nowhere! When its really bad I just want to break down and cry ,but I feel to weak to even cry. I have also noticed an increase in leg pain..some days they ache so bad it prevents me from attending class. In addition, I have noticed a grape sized knot under my jaw line that has been there for 2 weeks now. Im setting up an appointment later this week. Maybe this has me more stressed out.. Im also a mom to three beautiful children (all under 7) and my husband works out of town and is only home 4-5 days a month..I feel like such a bad mom at times; when I feel bad my patience is thin and I get upset because I can't do all the things I want to with them..my biggest wish is just to run with them and play tag, the little things.. Just seeking advice I guess and needed to vent..I feel like nobody understands and it makes me so angry when people without pots say they know how I feel (only if they could - just for a minute) Id never wish this on anyone, but I guess sometimes misery loves company *Please excuse all the grammar mistakes..still getting used to this tablet and someime I tend to ramble!

First of all, congrats!!! A baby is such a blessing! I have went through 3 successfull pregnancies with pots. The first few weeks my hr. was a tad higher than normal (my normal is 130) and I had a few episodes of intense palpatations...surprisingly, as my pregnancy continued, my symptoms almost vanished! It was after the delivery (csection) that I had issues. My hr was all out if whack and my bloodcount was very low. They kept me an extra week for observation. After my body somewhat settled, I went back to my everyday symptoms. Just make sure to discuss your condition and meds with the doc! Best of luck hun

You can really never say fir sure..I work full time and usually have symptoms that I deal with daily such as a fast heart rate, leg pain, dizziness, etc. I do everything I can to prevent it though! I eat very small meals and listen to my body, if it seems like a bad day I don't push myself. Tmi alert, but I am a woman so I always have a big flare up once a month...just have to deal and be prepared

The fastest I've seen mine was 190 in the Er..it get up to 130-150 daily. I was told to bear down like your having a bowel movement (tmi sorry) and that's suppose to help. I just lay down with a good book or take a relaxing bath to calm myself down

I get this often and its very scary. I will lay down and attempt to fall asleep...as soon as I feel myself drift off it feels like my heart stops (or skips a beat) and this sends and adrenaline rush throughout my entire body and causes me to loose my breath. When I sit up I still can't breath and it takes a second to get back to normal. I also went numb last night but I think I had a panic attack when I couldn't catch my breath. Its SO frustrating! It happens several times a night and it takes me until about 3 am before I finally pass out. I just want to sleep! I work full-time and its affecting my job performance Has anyone had this experience? Ps: I know all about sleep paralysis as I practice lucid dreaming often...this is not what im describing. It also happens when I get overly tired! Thanks for any advice

I got married very young, at the age of 15. I developed pots at the age of 14 but my Symptoms did not start flarring really bad until 16. Everyone in my family, including my husband Doubted me. My husband Was never mean about it but he would get really frustrated after working all day and taking me to the ER all night multiple times a month ( before I was diagnosed) He let it slip one time that he thought it was all in my head...It took a very hard toll on our marriage. It was not until I was diagnosed that he finally started believing me. We have been together 7 years now and still work thru some of that. It is very hard for somebody who does not have a pot to truly understand. I never wish this on anybody, but sometimes I wish they could just feel It for one day.. As for your question, I am one of those people Who do believe in soulmates. Somebody will come along who understands, even if you have to teach them how

Thanks guys! I am going to discuss this with my doc of course and make some major changes to my diet... I already cut out caffeine years ago. Im really considering this gluten free diet. Wish you all good health!

Im so sorry! I know how scary it can be when it isint beating "right" especially when no-one around you really understands. Just hang in there! Feel free to message me if u need someone to chat with...feel better!

I get this too...wierd how it differs..im in college and when I have to speak in front of others I swear my hr hits 200! Other times when im scared it will shoot up and then slow down dramatically...when this happens I can also hear it beating in my ears. Just wait for it to regulate again.

I have been dealing with nausea (a new symptom) and other gastric issues (delayed emptying, bloating) for the past few months and it has gotten so much worse lately. Last night after eating a few pretzels and drinking water, I feel extremely nauseated! It was so powerful that it made my chest feel very heavy and cause palpitations and shortness of breath. It felt like I had trapped air or something. I could not throw up no matter what I tried, ironically! I ended up taking a 3 hr bath and forcing myself to fall asleep. When sleeping I could feel the pressure and my hr was very erratic. I eventually feel into a deep sleep, its like my reset button... Im surprised I didnt end up in the ER. Has anyone else had this? I couldnt decide if I needed to throw up or burp, but neither would come! The pressure was scary though...Sorry if it was tmi, I just want to be prepared if it happens again