bamagirl

For the past two months I have a feeling on my skin like someone is tickling me with a feather. Then it will feel like a cold rush or gooseflesh. Anyone have this every day?

Carmen, I know how you feel all too well. I was only married 3 months before I got sick. It seems like every time I get in a POTS hole, I go into rages and take it out on my husband. I swear, every other week we are getting divorced!! Somehow things settle down and we are able to get back in the groove again. Things will get better. They HAVE TO, because they sure as **** can't get worse, right!! Take care and both you and hubby HANG IN THERE! take care, bamagirl

Any of you get BP crashes when lying down? Also, when I get IV's, I sometimes get really tachy and feel funny. Is this normal. bamagirl

I would love to know any test you guys know of that will rule out peripheral neuropathy and raynauds. I have had emg/nerve conduction studies and autoimmune blood tests-all were normal. If there are any more tests other than these that can confirm this, please let me know and I will get my doc to run them. My legs hurt and pool now more than ever. thanks, bamagirl

I am sending you **HUGS** right now. Please know that you did what was best for your baby and yourself. GOD works in mysterious ways. I had a similar situation myself and I cry almost every day over it and cannot go one day without thinking about my baby that is not here with me. Again, we do the best we can. Let's no beat ourselves up anymore than we already do. Let's give ourselves a pat on the back for dealing with such a complex illness and keep going strong!! Again, my thoughts and prayers are with you. Take care. bamagirl

I have blood pooling in my legs. So bad to the point that my legs turn purple and blotchy. I have had an autonomic reflex test which showed that I don't have autonomic failure or autonomic nerve damage. I have also had emg/nerve conduction studies which show no peripheral neuropathy either. My question is: How can everything be normal and I have so many symptoms every day and feel soooo sick? Also, my skin burns all the time, my feet are either ice cold or throbbing in pain. I just need some anwers, I guess. thanks, bamagirl

Any of you get the chills often? For the past month I have had the chills every day. I take my temp and it is 97.0-98.0 so I know I don't have a fever. I think it is really strange that this has been going on for so ling and so often. I feel so alone!! bamagirl

I have been having burning skin for the past two weeks. I am wondering if anyone else gets this or if I should be looking elsewhere for the reason. I have had every test out there done, all negative. This always happens along with gooseflesh and tachycardia lying down. Anyone else get this? thanks, bamagirl

Yesterday I felt terrible all day. I have actually felt terrible for a month straight now. I have had the bursts of tachy palps alot and just been tachy in general all throughout the day. I was up and moving most of the day and suddenly around 7pm I got sleepy to the point I literally had to lie down on the bed with all my clothes on. Anyway I napped for about 15 mins and woke up with my heart racing, I had the chills and I was so dizzy. After a couple of hours of lying there in the bed, my whole body started burning like it was on fire!! My feet were burning up and throbbing, my temp was only 98.0!!!?? Anyway, needsless to say I had a terrible night. I had burning skin and tachy all night long. I had sleep paralysis this morning. Iam so scared right now. I feel like I am just withering away. Does anyone else get these episodes and know what is going on or how to make it go away? really scared today, bamagirl

Anyone have POTS lay dormant for a few years and then relapse? Is this normal? thx, bamagirl

I have been having adrenaline surges all week. This has never happened this often before. I am really depressed and I feel terrible. Can anyone relate to this? I feel crappy a few days before I get a surge. When I get the surge my bp goes up a little around 130/97 and my hr is about 160 and pounding. I get a strange feeling right before it happens, like an aura or something. Then afterwards I chatter and my vision is blurry and jumpy for days and I am tachy all day long even while lying down, around 130 but not pounding. Then I sleep for two days and stay in bed for about a week. Does anyone else do this and know what is going on? I am ready to give up. bamagirl

Does anyone have stiffness and tmj? I just don't see how arthritis and tmj can have anything to do with POTS or dysautonomia. Also, why would I have tachy while sitting and lying down. I really think something else is going on. Any thoughts or does anyone have the same symptoms? bamagirl

I had mine out last may. I was throwing up every night all night and had constant nausea along with pain in my stomach and upper back. Gall bladder emptying study showed mine functioning at 18%. Surgeon said it was "distended". Anyway, I still get nausea but not near as bad and I don't vomit anymore every night. I would do it again in a heartbeat. I still don't understand why dysautonomia causes gb problems. bamagirl

Who here has flares? I would like to know if anyone here has flares and what happens during those flares. Any nuerological, muscular, cardio, emotion, sensory-anything. I know most everyone has this every day, but need to know about the ones with waxing & waning flares and the symptoms. I'll go first. I'll get tachy but not an adrenaline rush for a couple of days My vision will get very sensitive I'll get dizzy & nauseaous My skin will burn I get a creepy crawly feeling or tingling sensation over my body I get sleep paralysis I get insomnia My legs will turn purple and blotchy I will have an adrenaline rush I have horrible nightmares I will twitch in my arms and legs I get gooseflesh My bp will get very low Does this sound familiar to anyone and does anyone have this same pattern? thanks guys! bamagirl

I would just like a little poll maybe from us all who has had an EP study, cardiac ablation, or defibrillation implanted. My EP is pressuring me to do this and I wanted to know if it works. I don't just have tachycardia, I feel physically sick when I get tachy. Anyway, any input would help. bamagirl

I get tachy in spells. I may be fine for a month and then WHAM! I get an adrenaline surge and I will be tachy for days or weeks all day long. I pretty much stay in the house when I am tachy because I have tried to ignore it and go out and I will nearly pass out and the grocery store or get too dizzy when I am driving. I used to take toprol and atenolol but all it did was make my bp lower than it already is, so I don't take any meds now. I hate this too, trust me. I get chills, diarrhea, nausea and all that other great stuff along with my tachy as well. Try to rest on your tachy days and remember a good day is on it's way. I hope you feel better soon!! bamagirl

Can anyone who has tachy surges all through the day every day let me know please? Mine are getting more and more frequent. Also, I would like to know what helps. I can't take beta blockers because my bp is too low. thanks, bamagirl

Sorry to ruin the connection, but I am 1/4 irish 1/4 dutch 1/4 italian and 1/4 native american indian. I have dark hair and medium skin. No one in my family has every had POTS or any other type of chronic illness. My illness came on suddenly at work when I almost fainted while standing. I haven't been the same since. However, I recently found out that I have lyme disease with 2 co-infections. Hope this helps. bamagirl

It's ok to have a pity party every once in a while. Dealing with a chronic illness can be very frustrating and scary at times. On my bad days I stay in bed and rest. I watch tv, read a gossip magazine, talk to a friend on the phone (one that is positive and understanding of course!) and I always vent here. This is what this forum is for. On other bad days I may cry and want to end it all!! Please remember that POTS CAN resolve on it's own sometimes. I try to remember that on my bad days. I also try to remember that even if I can't live the life I once could that my family loves and needs me all the same. And even though I have lots of bad days here lately, I know eventually a good one is going to come and then I try to make the most of it for myself and my loved ones. I am sending you *HUGS*. Please know that a better days is just around the corner and you are not alone. Take care! bamagirl

Thanks, Carmen. I will check that message. Take care!!

Does anyone get morning nausea? When I am symptomatic, I wake up every morning with a little nausea in the pit of my stomach with a little cramp like pain mixed in. I goes away when I get up and move. Also, anyone ever get a burning sensation on their skin like a sunburn? This happened to me last night right after a tachy spell. Both of my upper arms starting burning like a sunburn. I took off my jacket and looked at them and they were both red and had heat coming off them. Just wanted to know if this is common in POTS or if I needed to mention to my doc. Thanks all!! bamagirl

I get this almost every morning. It's worse when I am more symptomatic. My nose will run, my eyes will water(so bad that I have to put vaseline on the corners so I won't rub them raw wiping them constantly), I sneeze, I get a tension headache. On other days I may get the chills and my nose will be so stopped up I have to use afrin for about a week. I have told the doctors this and they just scratch their head. I have no idea why this happens, just know that you are not alone. Take care- Bamagirl

Does anyone have a strange feeling come over their body before a tachycardia spell? I get this weird feeling right before, then my body tingles all over and then I have a full blown tachy spell. Sometimes I will get that strange feeling and never get the tachy. I am not anxious or anything, it's really confusing. Also, anyone sensitive to sound? If my phone rings, I jump out of my skin!! Thanks, Bamagirl

You guys don't know how much your replies have helped me get through this terribly trying time right now. It helps to know when you guys tell me "I know how you feel", you really do understand. Thanks so much for all of your support and kind words. Please know when any of you are really low, I will be there to help get you back in good spirits! I love you all and wish everyone a safe and happy Thanksgiving!! Let's not eat too much!!! Bamagirl

Yesterday I cried all day and told my husband I can't so this anymore. I feel like crap all the time. My vision is blurry and dark, I have horrible burning and stinging nerve pain in my skin, my heart races all the time, even while lying in bed, I get terrible migraines. Nothing helps with this stuff. My whole life is falling apart and I am lying in bed watching in go down. I can't work, I can't be the Mom or the wife I want to be. And the worst part is, no-one or no treatment will make it go away. I have been in bed for two weeks now and keep hoping tomorrow will be a better day. That tomorrow never comes. I have been battling this for five years now and have finally reached my breaking point. I'm tired of being scared all the time. How do you guys keep going knowing that every days is going to be a day of disease and pain? Sorry for the negativity, I just know you guys understand.