erikainorlando

Yes...terrible headaches..often and like borken shell...I don't really know what to blame it on....I just get headaches or severe chest pain...Erika

Hi.

Most times I feel very supported by my family and boyfriend. But...my daugher (15) who wants me to take her to cheerleading in the heat and drop her at friends and pay for cheerleading camp and etc. etc. etc. last night announces she is tired of hearing me say I am not feeling well.

Really...her life has been minimally impacted. I still make sure she gets tot where she needs to go...I just do it slowly....and feel awful doing it and have to lay down...

My boyfriend said that sometimes he is frustrated as well. I try to talk about "the weather"...bla bla bla...but when my life has/is so altered and I feel so ill it is just a challenge at times.

I want to be able to talk to them....is this normal for them.. I got very angry with my boyfriend...i said "well,, if this is difficult for you try being in my shoes!!". I am furious with my daughter who I almost kill myself trying to still get her where she needs to go...

Anyone relate...??

Thanks,

Erika

Wow....what nice young men!! i am impressed. I am old enough to be their mothers (46) and have a young son (11) so it made me think of how nice he is. It also made me think of how awful it is to be young and ill. I don't like it much at my age either and have kids dependant on me which is very difficult but I think I have the gift of experience....I really know that hardly anything lasts forever...and I feel very certain that dysautonomia will not kill us. I think it is scarier when you are young.

It is great that you have such a great girlfriend. I have a great boyfriend and family. I know they get tired of hearing me complain tho at times. But it is real hard not to complain. I had friends come over for the 4th of July and they never even asked how I was feeling...I guess they look at me and I look good...a little thin but good....or maybe they don't know what to say or well I am not sure....but I am sure happy to ahve you all to vent to...

Erika

I know of two women in my area that have POTS. I found one on this site and another from a chronic illness meeting I found at a local church.

I also have a great friend who has a different chronic illness. Actually, it doesn't matter to me if they have dysautonomia or something else...just someone who can appreicate being ill and the difficulties we face. For that matter.....I do have a couple of friends who are not ill and are just so great. They don't underand but they try and offer me their support and admiration. I also get alot of support from my kids....they are only 15 and 11 but they understand more than anyone!

I hae been dealing with chronic illness for years and they have seen a lot. I think it makes them more compassionate and appreciate life more.

Erika

i like to go...gets me out of the house....and like everyone else it just depends on the day. BUT I took my kids to go see TRANSFORMERS....this was a very bad mistake....crashes, banging, too much for even the average Joe, let alone me with POTS. I left my kids with my boyfriend in the theater. I couldn't do stay. It was funny tho, my boyfriend said "boy, I wish I could have left with you (and he wears hearing aides!)".

Erika

Yes...overstimulation is no good for me....my kids bank the cabients and I freak.

BUT I do have to tell you....I had my boyfriend and another family over for the 4th. I layed down prior to them getting here. I laid on the chaselounge under the overhand on my patio after the rain cooled things off. I let the men cook...I let the kids swim...my friend put out the store bought potato salad and store bought cookies...everyone helped themselves and I actually had a good time!!!

Around 7 the other family left...my daughter cleaned up! When the sun went down my kids did sparklers on the driveway while i sat in my lawn chair with my feet up!!!

Not bad at all!!! An I loved the company.....they are goood enough friends that if i have to lay down with a rag on my head they don't mind at all!

Erika

wow...how are you able to do this?? I am so jealous. I guess we are all different...I will keep trying.

I don't lift anything heavier than my 3 lb weights...and I did that once....mostly I stick with my 1 1/2 lb weights... 25lb weights sounds like I would be very sick for days!!! I know we all just do the best we can and have our own strengths and difficulties.....just made me chuckle tho ....

Happy 4th.

Erika

I know this probably sounds stupid. I can see that my feet turn purple/red when i stand and they swell...so I know that blood pools there. But...my hands and wrists hurt...my butt hurts...the muscles...and my legs...it is not always there but frequently enough...and sometimes it is bad.

I just started putting two and two together...when I sit in my recliner my butt muscles are my lowest point.....and that is where it really hurts... I am not sure if this makes sense to any of you...

Thanks...

Erika

Thanks!! I always like reassurance that I am trying to do all I can to get better. I have to say tho that I can in no way do areobic exercise. I do walk some and do a little strength training (very little..like 1 1/2 lb weights) for my arms. Sometimes that is even too much.

I made the mistake of trying to dance a little to one of my favorite songs a while back....very bad reaction. Activity makes me sooooooooo sick.... I have to go very easy.

Thanks tho...

Erika

I think that this illness has taken so much of our lives that it is important to do what makes us happy and contented (within reason of course).

I have had autoimmune problems before (severe bout with Guillain Barre) and i did elective surgery after that with no problem. Now that i have had two autoimmune responses I would really think about it...but if it was that important to me and the doctors said ok...I would l do it.

I have people tell me all the time to not do this or that because I will get sick (feel worse..). Sometimes they are very right and I should not have gone on that long of a walk etc. but I have to live. i have to try....we can't live in a bubble.

Good luck...keep us posted.

Erika

Thank you...I had such a bad day today thatI just read most of these posts (...probably from all the stimuli last night).

Your kind words really soften the blow of how much diffent my life is these days...

Erika

You all are so kind. I am so glad to have a safe supportive place to take this stuff. I get so frustrated and feel so alone at times with this..it is so nice to know I am not.

Erika

Maxine - you mentioned that POTS is rare...do you know the statistics of how rare it is? I've wondered this for a while.

Thanks,

Erika

You need to get a medical degree...and when you do I will come to Australia and see you!!!

Thanks for all your research!

Erika

i just needed to post....

My son's 11th birthday is on the 8th. He wanted an ITouch. I had my daughter (15) take him into the Apple store at the mall. They got it all figured out and then I would walk in...go straight to the store and pay and leave. I walk but not a long ways and it always depends on ..well you know...it just depends how far I can go...

I was walking into the mall, getting nervous at how far it was just to get in. Walked thru the food court...lots of people...neon signs...too much for me.... I couldn't find the Apple Store..it seemed too far. Kids darting in and out.. I was not feeling well at all. Then I hear "Erika"...it is my boyfriends daughter (she is just an adult). She knows I have been sick but probably not all the specifics. She is with her husband and kids. She says "boy..you look frazled"....I say "Io have to get out of here!" ..She keeps talking...I am thinking that I am going to fall over...I am sweating at this point. I need a bench..I try to cut it short..and know she can't figure what is going on with me...I hate this!! I hate having to say that I have to sit...can't walk far....I am embarrassed!!!

Furthermore..she starts with (she is very nice..) her daughters Quincinera is on July 25th...am I coming with my kids...(her kids and my kids are about the same age....my boyfriend is 12 years older than I). I would normally love to go...I am way nervous about this tho... I can't dance. I don't even know if I can walk all the way into the hotel lobby to the ballroom....I also don't like a lot of noise. AND I never know how i will feel!! I normally love this stuff ...dancing and socializing. but I am not myself these days. AND I am embarrassed that I can't.. It takes all I have and then some to get to the Apple store...

I don't know if anyone else can relate...I feel like a failure at times like this

Thanks for listening...

Erika

Wow~~~!!!

I am so impressed!! You graduated and with this horrible illness!! I know it is not probably an answer but I ahvce to say...just bask in the fact that you did this!! Do you know how amazing that it? You will find a job...just congradulate yourself. Try to take it easy...you have accomplished a great deal.

Also, most of my friends don't understand and honestly my best friends these days are my kids and my boyfriend. The rest of the world really doesn't get it....i only have energy for people who "get it"....

Pat yourself on the back....you have done something amazing!

Erika

Thanks everyone!

In fact it just seems to help to voice that I am irritable. I feel a little better today...

I will just keep an eye on it and talk with my doctor. It may just well be the combination of the adrenaline stuff...and how badly I feel most of the time. Also...easily overstimulated...does this make sense to anyone....does anyone else ever get this?

Erika

Thanks so much for your post!

I get it! It really depends for me on if i feel like dealing with their questions or reactions. Sometimes I get angry and say "of course I can't travel (bla bla bla)...still struggling with drying my hair thank you very much!". But I try to remember that most folks really can't relate to those of use who are really sick....they just can't...they don't know why a pill doesn't work for us. or we don't look sick...patience...and focusing on the blessing that some in my life do get it.

I had a friend ask the other day (when I said I had tried to do too much) if i had tried to play tennis. I looked at her as if she had lost her mind...tennis, skiing...wow...are we all on the same planet? But I gently reminded her that I can't always make it to the supermarket and the thought of tennis sends me to the ER.

Erika

Its hard on everybody...really. You replied to my post about being irritable. Yes....I don't even know if it is the meds or not....but yes...when I was so irritable this morning I had just taken a shower and dried my hair....I was shaky and dizzy and angry that I was so dizzy. Then my kids (and I love them so much) keep talking...loudly! They go go go....I can't keep up. So maybe I am just irritable!!

Anyway.. I totally understand. And yes..i think at least for me

I have to try to accept that I have to accept the unacceptable at this point in my life. I don't have the energy to fight (sure can't yell and feel alright after!!). I just have to accept help and say thank you. And let a lot go!!

Perhaps in many many ways we are trapped at this moment. But life changes....it never stays the same. A few years back i nenver thought I would walk again (due to a different illness) but yet I was able to snow ski...... then of course i got POTS....but my point is we just plug along and post. Your posting has helped me so much. I totally relate.

Just wanted to ask. I started taking prozac in April...initially it helped with some of my POTS symptoms and also seemed to help emotionally. I only take 10 mg. My EP said to start taking 20mg. I tried but I was crying alot then...so I cut back. But I really still feel like I fly off the handle faster than usual and i don't like it. I thought prozac was to even us out....??

I also started taking the pyridostigmine...I felt very irritable this morning. i just kept biting my tongue, trying not to say too much!

Has anyone noticed this....perhaps i am irritable as I don't ever feel well either...but it feels more like a chemical thing. I also take bb's....have been taking them since January but haven't noticed irritabiltiy with them....

Thanks!

Erika

Honestly, I let a lot go. I just know that I feel awful most days...and that those are normal symptoms of POTS. I have been tested, had the MRI, heart cath etc. I also know tht if I get real bad I will go back to the hospital and check it out but I really try not to borrow trouble.

This illness has taken so much of my life and I get upset tht it has a tendancy to take my peace of mind as well. We will get better or at least learn how to manage our symptoms better.

i say get all the tests you need to done so that you feel more comfortable and then try not to worry.

My paranoia centers more around getting sicker...just with POTS symptoms....and then i try to quickly let tht go too. I really appreciate this forum so much and it helps me keep a better handle on my run away mind.

Erika

Congradulations! I am so glad to hear you are doing better!

It is so nice to hear that you are too busy to post!! That is improvement!!!!

Drop a line every once in a while if you can and let us know how you are doing...also ow long it took to find the right meds...and by the way what are they?

Thanks for posting!

Erika

Thank you! Thank you! And Thank you!!

You don't know how much I needed to hear that someone was really feeling better. I can accept if I am never going to be 100%...but I really like to think that I can improve....and don't have to get nervous about doing too much and not being able to wash and dry my hair...or not being able to ge to off the couch!!

I love to hear from you folks who are doing better. it gives me hope. I am so happy for you and for your kids! It is a family disease as it not only affects us but everyone around us who love us..and our kids are so vulunerable and needy and too young to understand...

Please keep posting all those wonderful inspirations.

Erika

I tried the Pyridostigmine today...30 mg. I didn't feel any better...in fact...my tongue got itchy and the pressure in my head seemed to get worse. I don't know if these things go away with use. I did get them when I first tried it too and discontinued it because I didn't see any benefit from it after a week.

After reading that it may take from 2 - 4 weeks to see an benefit I decided to try it again. I will try it again tommorrow...hope this itchy tongue and head pressure gets better...anyone have these side effects from it?

Thanks..............Erika

I am so impressed. Can I ask what type of doctor did this testing? I had a TTT and they (he, my EP at the time) just watched my hr go from 80 to 150 and said...POTS. There was no blood test etc....

Was it done at at an autonomic ns site or somthing? Thanks!! Erika