lissy

my sitting is 70-85 sleeping goes in 50's

standing 130

Before DX I did have alittle too much alcohol and my heart was 150 sitting the medic said thats not normal we should take u in....

Lissy

I get headaches (migraines with auras and they also affect other parts of my body) The times I get them without auras my head KILLS me and I don't want to even be alive it gets that severe!!!!!! I do put heat on the back of my neck or is it ice LOL my memory is terrible.... well try both LOL it helped alot. Most of the time I can prevent it from going full blown with laying down and eating something light (the severe migrain). The other type I have is scary it hits whenever and sometimes without pain and I loose vision and other weird things . I have to scramble around the house cage my kids in one room( ages 2 and 3) getting them everything they could possibly need over the next 45 minutes and run to the couch and curl up with extreme panic.

Lissy

thanks for replies----I did have a baby almost 2 years ago when my POTS went haywire!!! and when I first got sick I was losing weight actually my normal weight was about 100lbs went down to 93 and now back up after all this time currently 105 I'm not on any meds yet...my family doc said hormones looked normal and couldn't offer no real answers. I do wear padded bras also I just notice my skin is just saggy also on my neck like my whole body is lackin and dehyrated . One thing when I went to the endo doc to check hormones he did say my thyroid was on the low side not enough for diease but if i wanted he would treat me for hypothyroid which also didnt make much sense.

Lissy

Anyone know of any????

Thanks Lissy

Hi,

I feel sick 98% of the time I have seen some improvement since the weather is changing, I really forget what normal feels like... like Sophia said about the short cuts you must learn those. My hardest thing is just coping with the limitations I find it hard to accept and I push myself alot to feel half normal I guess I need more time to adjust . Anyway you are not alone.

Lissy

Have you had any problems with losing breast volume since becoming ill? I have this issue and I have had most of the hormonal testing and everything has been in normal range . I am 31 and didn't think you really lose volume at my age, I know its not a serious problem compared to alot of other issues we face but it has been a self-confidence issue for me.

And I have read some other posts that fludrocortisone kinda does something with estrogen and was wondering if this med would help with that issue along with the many others its suppose to help.

Hoping someone can relate to this and shed some insight. I went from a C cup to a A cup and it doesn't seem normal to me.

Lissy

This has been a newer annoying symptom and wanted to see if it had any relevince to dysautonomia ....

Mine hits randomly and starts as a low high pitch ring and gets so loud I can't think and it last for 15 minutes at the most .

Lissy

This condition affects your involuntary functions-----breathing, swallowing,muscles ,fight or flight responses, blood presssure, heart beats.This probally whats probally going on . I get that feeling and I usually lay on my stomach and take some deep breaths , I also use a fan alot it calms me and I always feel better cool.

Lissy

Thanks for responding I am looking into daycare a few times a week I think I will be able to get some much needed rest! theres not any programs that assist finacially with the cost for people with disabilities which kinda affects my options .

Lissy

I'd like to add to this discussion why would there be such a shortage of this vaccine if there was this outbreak in 1976 was it.....30 years of research time and preparedness it doesn't make much sense . Hope all is well with those of you and families ill with this virus.

Lissy

hello,

If you have a place called The Scooter Warehouse in your area they have some pretty affordable one there as low as 600.00 and they do have layaway thats what I plan on doing and they are the lightweight portable ones that fit in the trunk of a car.

Lissy

mine got worse with every pregnancy after delivery , during pregnancy had fewer symptoms but after every baby it had brought on more symptoms unless it was just progressing anyway but I doubt it since the drastic changes in hormones and blood volume have alot to do with POTS. They also said after last delivery that I had some sort of postpartum cardiomyopathy and to never get pregnant again or it could kill me. My heart was very weak at that time I took a stress test and couldn't get me heart rate over 130 fast walking and now lol it gets that high from just standing. Its all kinda bizarre do alot of research and talk to specialist not just the basic docs.

Lissy

Hi,

Sorry your feeling so bad hope you get well soon!!!!!!! I avoid alot of public places and I always carry sanitizer and if I do go to a function and someones sick I leave LOL I'm a alittle extreme I guess but I don't get sick to often....and sometimes I ask the host of events is everyone healthy before I commit myself to going.

Lissy

Hi,

YES every time I get blood work symptoms get worse I do always warn the nurse and a few times they use the children size needle and it did help . The blood rushing out ,feels like my body knows I don't have enough as it is, and I get an instant paleness,sweaty,spinning and the whole room appears 10x's brighter. Its crazy but one of the things the dinet site says is avoid getting unnecessary tests ... They take way to much blood anyway for the tests also I think they do other stuff with the blood like other research that has nothing to do with what we are having done. All the nurses in the labs I have asked the question of how long does it take to rebuild the blood that was taken all said 3 days.

Lissy

Hi,

mine are the same also they mostly happening standing and they will come with a shortness of breath feeling and pass quickly. I usually take a deep breath or cough and it stops the panic feeling for me. I do get chest pain like a heart-ache feeling sometimes usually during menses with more palps.

Lissy

Hello everyone its nice to be back, this website is more helpful than I realized until my computer crashed!!!!!This is the only place I can feel and be myself without judgement or disbelief.To those that don't know me I've had the pots symptoms since my teens which have gotten progressively worse especially after child births. July of 08 had a supposed infection which weaken my heart after delivery.....and dysautonomia syptoms went full blown and haven't left went to at least 20 docs and dx myself also then finally got a dx from a EP cardio with 24halter he viewed TTT said it was neg but it fact it wasn't . Anyway I did go to Clev.clinic in July seen Dr.Fouad very caring and intellegent and shes there for the right reason she cares about your health. Based on my med history and them checking vitals she did prescribe fludrocortisone she wanted to do the other test at that time insurance wouldn't cover it so I have to go back in Jan. to do the remaining tests. I have not tried the meds because I am terrified I get really bad side-effects from almost everything!!!! I know I should at least try but I'm so scared , no-one understands my fears but I know you guys know what I'm talking about its not just in your head side-effects so maybe being back online will help me find some sort of security in trying this med if not I'll just wait intil I go back to Clev. my problem is I am alone with my small children no friends or family to help if I do have a problem with effects and that makes me so uncomfortable to try this.

Now a few things I have to ask if anyone has some input.

To those not on meds----have you noticed if you do drink adequite amounts of fluid you feel worse? is that because losing sodium in urine?

Is the change in temp for up north folks help at least 50%? I have noticed improvement

Do you have such severe memory problems that leads you the feeling of detachment to surroundings?

Well thanks for reading and hope everyones having a good day.

Lissy