icesktr189

I get this and I have severe all year long allergies. I cant even go outside on days when the pollen is high or I end up in a massive flair.

I was on Lexapro and klonopin when I did my TTT and still failed it, so you might be able to get away with staying on your meds.

I have literally probably had 20 IVs easily... everytime I go in to an ER or whatever they give me one regardless. I dont know if its just the hospitals I go to, but the always just hook up one for me no matter what I go in for... I never felt worried about it because its just saline... not too much harm can come from them During labor they gave me 3 bags before they put my epidural in and I felt a ton better. Wish they were easier to get.

Couple bags of saline, vertigo meds, nausea meds, lab workup, chest x rays... ect. Sometimes they admit me depending on how bad my vitals are. I dont use the ER to "fix" my POTs problem, but it helps me get better until I get back into my Cardiologist or Neuro.

Thats great they are doing that, but have you asked for a PORT? Everytime I get an IV, the good feeling only lasts 8 hours max, so my mom who has a PORT does about 2 bags a day to help with her symptoms.

I usually go when I am passing out more than 5 times in an hour... pretty much where I cannot stand without passing out. I just dont have a choice, I have a daughter to watch and if I cannot stand without passing out, I cant watch her. I have had babysitters come in and help, but we cant afford to have a live in nanny right now. Other times it was from severe chest pain and one side of my body would go completely numb. It is always POTS, but I always have that thought of what if it isnt this time

I dont go unless I am pretty much dying...ie passing out more than 5 times in an hour. But only you know your body and what you can tolerate.

Why yes it is! LOL This is why I am pushing for a Port! I just got one a week or two ago and felt amazing, but unfortunately it doesnt last too long :/

I def. think it is related... my mom has tons of inflammation and had ulcertive colitis and now Crohns. I too have problems like you...after my pregnancy all my joints swoll up and I had trigger finger in every joint.. they thought it was RA, but it was negative. LDN is supposed to be really great with reducing it... have you tried it?

Oh dont be sorry! I was just trying to write what I think she meant I am definently happy I dont have cancer and would chose POTS over a life threatning illness anyday, but you still have to deal with what comes with it

I think what she meant by cancer is that she wants POTS to be a reconized illness, not one where doctors have no clue what to do with you when you finally get diagnosed. There is so much media coverage, sources and treatment plans, whearas with POTS and Dysautonomnia, it is almost existent. I dont think she means her daughter would rather have cancer, just that we wish it had a definite treatment plan and people didnt look at you crazy when you tell that what you have.

Congrats! I am waiting on my hearing which will probably be a year from now.. how long did it take you?

I have been having adrenaline surges all day from not getting enough sleep last night and my almost 2 year old is throwing fits every 5 mins. I am at wits ends! She is wearing me down fast today... How do you handle it when your kids dont cooperate??Movies and books are just not cutting it today. I gave her some crayons and paper and now I have marks on my wall because I wasnt paying enough attention while I used the bathroom. Excuse me while I go pull my hair out..

I have wrote a lot about SSRIs and while I did have a hard time in the beginning, after a couple months I had NO side effects. It got me my life back by reducing POTS and OI symptoms.

I just say that you were tested for Lupus... I heard of people getting multiple negatives then a positive. Also, I dont think that the extreme muscle weakness you show after eating is normal with POTS. I do feel more tired and slumpish after eating a meal, but not to the point I cant keep my eyes open.

I also developed facial redness in a butterfly pattern" Have you been checked for lupus? That is a huge symptom, especially with everything else going on. It sounds like dysautonomia, but it could also be an autoimmune thing. That is the problem with this stuff, is there are so many symptoms, so its really hard to say. Have you seen a rhemetologist?? Have you had high ANAs?

Mine is definently POTS related.... when my POTS is controlled, there are none and when I am bad, it is too.

Just like lemons, an SSRI (lexapro sister to Celexa) got my life back a couple years ago. I worked great until I got pregnant and stopped. However, if you have to get off WEAN over months or those adrenaline surges will come back with vengence!

The biggest thing for me was not to be in my bed at all during the day, only use it at night for sleep. I dont know why but it has helped tons to be on the couch or even the floor.

It takes awhile to work though.. it has to build up in your system... I heard some didnt have improvements for months.

Thats the thing... I know I could have it worse and I am so thankful for my family and friends, but it doesnt make it any less difficult. The fact of the matter is, is that without this condition a LOT of things would be better.... pretty much everything would be. Parenting, going to college,ect and actually ENJOYING it to the fullest because you are not having to think about what your body is doing every second of the day. It just irks me when I see people complain that when they went out to dinner it wasnt the greatest, when some of us dont go out at all. I used to be just like that too before this, and i wish I would have not taken it for granted. I think i regret that the most.. I would have done more while I still had the chance. Thanks for listening Its great to hear from everyone... I guess after this week of dealing with obnoxious doctors, I have about had it LOL

I totally agree that life could be harder, but I personally have never experienced not having enough to eat or any of those terrible things, and I dont thnk most of my friends have either (thank god!)... so for me, it definently is the hardest thing I have ever experienced

I think that is also the problem with this disease, is there are so many ends of the spectrum. I know there are some people who just have their heart race a bit and can work, drive,ect with minimal symptoms....then there are others who are bed bound and completely disabled. So of course for some, this illness is not going to be as bad to one person, than it is to another. For me, other than the deaths of family/friends, it is the hardest thing. It has just taken so much and the complete lack of knowlegde from doctors makes it worse. If more understood I really think it would be a lot more tolerable. I feel like everytime I talk to a doctor, they think I am lying or exaggerating my illness. Also the depression and anxiety that comes with this... I guess just having the mental and physical all together.

Oh I am definently not talking about watching family members suffer or die...I meant things that can happen to YOU physically/emotionally. If anything happened to my daughter or family, I understand it would be worse than POTS anyday. I am more talking about any diseases or life events that specifically happened to you

Exactly! I take care of my daughter everyday with POTS and still dont complain half as much as some other normal people do with children. I understand that they dont know what it is like to have a chronic condition that is disabiling, but it is hard to watch how easy some people have it and take it for such granted. I had people tell me that because I became a mom at a young age that it would ruin my future, but POTS did that way before I even had a child. I didnt drop out of college or quit my job because of my daughter, I did because of POTS. I know that I would be going to school and working right now if I didnt have this, and that is what makes it so hard.