It's Getting The Better Of Me

[mom4cem]

Hi,

I'm sorry if this starts to sound like a pity party. I am just soooo tired of this. Yes, I certainly don't have dysautonomia as bad as others, but nonetheless I can't handle the symptoms that I have anymore. I'm starting to feel like I will never get better or at least reach some manageable level. That my kids, hubby and all are paying the price too. I can't make plans to go out, I just never know when the tachy is going to hit and I am miserable when it does until it levels out.

I've been told over and over from the cardio to the er that it is sinus tachy. Nothing ominous about it but they don't know why it just goes up slowly and slowly goes down. What once occured once a month or so has now been happening almost every day. Not for long, but an hour is long enough. Every endocrine angle with blood work has been tested and that has been negative yet my doc feels there is some type of excess catecholamine syndrome...big fancy not a real syndrome, but the best he can come up with to describe it. I just seem to shoot out adrenaline at all different times. I do have hours where I am o.k, but these seem to get pushed away by the episodes. These events have been captured on monitors also.

Just tired of waking up in the morning with a surge, and then waiting for the big surge to happen. Just stinks!!! B/p is all over, from low. to normal to high. Reflux kicking in big time too now. Appetite next to none. Yes, I've been to therapy for years now and this time I am going to try hypnosis to see if I can learn to better handle these events.

I am also going to give lexapro another shot just to see if the nuerochemical imbalance thing could be it. I just hate the effects.. think I will bite of a tiny bit and work up from there.

I wanted to go and get re-tested TTT wise and the center in Ala where I was diagnosed with dysautonmia years ago, I just don't think I can make the trip with the uncertainity of these attacks. Its a long trip. I don't even know if I would be a candidate to see Dr. Grubb, since I don't seem to fit into the POTS category exactly though I have most of the symptoms. And that too would be quite a trip at this time.It just seems hard to believe that your body can turn on you like this and there not be something seriously wrong.

I just find myself lately crying over what normal was, and crying that I can't seem to be there for my kids like I once was and what the future will bring, will I see them grow up(I know getting depressing). Even doing simple walking yesterday pulled the life right out of me, something I had no problem doing a few months back. To look o.k, and have others tell you, oh you just need to go out and have fun...uh, yeah if I could I would,,that bugs me. I don't choose to feel like this.

I've got to pull out of this funk. Someone send a rope down this hole! Thanks for letting me vent. You all are so good.

[futurehope]

I can empathize with you and I'm sending a rope down into your POTs hole to rescue you. I want you to realize that you are not the only one with struggles in every day life. This ailment is really tough.

I kinda wish the Bill and Melinda Gates Foundation would take some of their money and give it to research into this dread disorder so they could help us lead a more normal life.

I wish better days ahead for you and everyone on this forum. I think we are all heroes for coping with something so beyond our control.

[nadine]

I feel your frustration and sadness as well.

I have also been feeling worse than usual, symptoms really more intense and trying to not get discouraged. It is very difficult not to feel down when your life has completely changed. I think the unknown in regards to this strange illness is what makes it so hard. Never knowing what the day will bring, minute to minute. My husband is on vacation and once again this year, we are not able to go off and do anything. Yes, we can enjoy each other's company, sit on the porch when not too hot, but it is not the same. I do grieve the loss of my former self- we always went away for at least a week, beach walks, long drives,boating, etc.

I am trying my best to accept the current situation and trying to stay positive, but there are many times you just say enough already!!!! As a mother of young children, such as yourself that is even more difficult.

I am also wishing they could clearly define my medical problems and find so way to manage them.

HANG IN THERE - we will all continue to support each other --- as we do understand, when others try,but can't.

[BEE]

Hang in There..you can get through it..Remember all the days that you spend sad and frustrated are days that are wasted that you couldv'e been happy.

I know that sounds silly but this stuff is SO tough to deal with at times I know personally like many others just take it one day at a time...

[Guest Julia59]

I'm sorry your in this Funk. It seems this past year has been rough one for a lot of us for some reason.

I think these surges come in cycles for a certain period of time, and then they go away slowly. I have noticed this pattern with me over thae last 20 years or so. I really didn't crash badly with POTS until 2000.

I don't know if this is of any help to know this, but these spells can sometimes be temporary for some.

I don't exactly fit the "POTS" profile, but Dr. Grubb diagnosed it, and I still see him.

I have also been in a sort of funk, so I really know how you feel. Sometimes you just get tired of trying to coordinate your medical care---or medical records, only to be blown off by another doctor who doesn't understand this stuff. You and I, and the rest of us know that there are many physicians out there that don't have a true passion for helping patients----they are either in it for the money, or prestige---or both.

In the 90s my tachycardia/hyper adrengic spells were controlled by beta blockers, but when I had those spells in 2000 I was on a beta blocker, and it didn't help---I was so scared. I thought it would be impossible to have tachycardia on BBs----then I remembered I took xanax in the past (90s), but I was put on the xanax the same time the BBs were prescribed. Finally, I found out I had something wrong----ANS dysfunction/POTS---and it helped me understand this better. The combination of the BBs and xanax helped.

But unfortunately when these spells are going on----it's hard for any of us to keep our chin up. I can't even stand to be touched when they happen, and I certainly can't be out somewhere. I have had these spells hit while I'm on the other side of town, and then I had to drive back home. The beta blockers don't work completely for them, so I was put on a low dose of klonopin and take only 1/4 to 1/2 of one in the evening, and it seems to help prevent one, of if I go out I'll take the klonopin along with me. I had no problem going off the xanax that I took in the early 90s. I just tapered off them in six months or so. In the 80s I took phenobarbitol which was an anti-seizure drug----they worked like magic---I didn't take BBs at the time. Back then I was diagnosed with MVP. I heard the drug was very addictive, but I tapered off it the same way I tapered the xanax. You definately need to be careful with benzodiazapines---you don't want to build a tolerance.

Those spells are rough----but they won't kill you----so I always remember that. If a low dose of klonopin doesn't work---I don't take more---I just sweat it out.

I hate them---I hate them---I hate them-----the worst part of POTs as far as I'm concerned-----not only do those spells mess with us physically, but they mess with our minds as well. I have felt out of my mind at times, but I always snap out of it thankfully. I just think a lot of hormones are swimming around like crazy when these happen which can make a person feel crazy out of their mind. I fondly refer to those spells as "GEORGE" named in 1982---my ex-sister in law and I thought of the name. One time when I was having a bad one before I was on any meds---my Aunt who was a nurse told me to take some tylenol. I thought she was nuts. I took it anyway, and it worked. She told me, "sometimes if you change your body chemistry around a little---it might trick "GEROGE". I'm not saying this will work---but it's benign enough that it can't hurt. I took it while in the midst of an attack.

These spells never stop scaring me, but I continue to keep in mind that they won't kill me. I also have ADHD---and it doesn't help matters----it only magnifies the attack.

We should be given some kind of medal for dealing with these, not to mention dealing with an ignorant public, medical community, and even our famlies---don't ya think?

I hope these spells go away for you soon & you can get out of your funk. I seem to do better depression wise if I'm not having problems with surges.

BIG HUG,

Julie ;0)

[jenwic]

Odd that you should mention the Tylenol. I have also noticed that it sometimes helps when I'm feeling really tough. I have been having shoulder and neck pain so I have been taking Advil at bedtime to help me sleep. I have found that on the nights that I take it, I don't have the body temp. fluctuations (sweating etc.) and the racing heart in the middle of the night.

[dizzygirl]

i'm sorry that you are feeling sad.. and feeling so cruddy with pots symptoms...

vent all you need to you'll feel better once you get it all out and off your chest!

BIG HUGS dear

dizzz

[sstephan]

I certainly understand where you are coming from. I have not been feeling well at all myself. It is very depressing and very very difficult for your husband and children when they just can't understand. I would love to go away with my husband but am just too scared now. I have a fear of traveling because I am scared to go too far away from the hospital and doctors who know me. It's an awful awful feeling, but as someone else posted I just remind myself that it won't kill me. I have a one and a half year old daughter and when I am feeling especially down I try to remember that I am lucky to have gotten through a pregnancy with POTS rough as it was.

We are all here for you.

[Guest dionna]

i admire you and all the other mothers. i babysit every now and then and i know that it is tiresome. at the end of my day though, i just them back to their mom and it isn't an everyday thing. just when i feel like i am capable. you still have them all the time and i know that all of you do the best that you can do. i don't know exactly what you are going through with your family and them having to experience this with you but hopefully someday i will have the chance to be a mother myself. maybe at this point in time you are just on the down side of the roller coaster and you are about to make your way back up. i always say that when you are at your lowest... the only possible way you can go is up. we have all been down but like i said i admire all the mothers the most. i know you must have to be very strong woman. good luck and i hope you feel better as soon as possible.

dionna

[mom4cem]

Thank you all so much. You all really lifted my spirits by understanding Unbelievable the friends you can make and never actually see them. That truly is the way to make a relationship right? The exterior does not matter, we know what is on the inside just be reading what we all write.

Today has been a bit better. The body is behaving a little. Maybe it knows I am 40 today....(no 40 jokes....I've had so many of those today already...lol

Hugs to you all and hoping you are having a good day.

[bttrflyamby1981]

I too understand where your coming from. To take it day by day is sometimes out of our reach. Maybe hour by hour?

Sending my best,

Amber

((((hugs))))

[AJVDK]

I also understand where you are coming from. I borke down ever hard tonight. I found that I just need to live and focue on right now, and hopfully the rest fill fall in at some point. I hope things start getting better for you soon. Hang in there.

[Jacquie802]

It's hard being sick, esp when those who you are close to don't understand. I am constantly feeling left out, by family, friends, etc. I have just decided that I do whats best for me. If I don't feel like moving out of bed for the day then I don't....Why should I have to try and make ppl happy by doing something that isnt comfortable for me that day?!

Jacquie