I Use To Be A Member 5 Months Ago (computer Crashed) User-mae

[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

[Elenapap11]

Welcome back Lissy.i feel for you as this site gave me a lot of comfort...and i recently discovered its existence.I too get lots of side effects from meds.Especially when i took Zanax and Zoloft.I stopped it without my doctor's permission and i immediately felt better.Now i take a small dose of Ladose.Again the doctor had told me to take a whole pill once a day which caused me nausea and stomach ache but when i decreased the dose to half a pill per day i felt better.I am not a doctor but from my experience it's good to listen to our instict and what our body tells us.So if you feel uncertain about a drug you can start with a smaller dose.But do discuss it with your doctor.

About your questions i have noticed that when i drink water i feel better.However i need to eat salty food afterwards to increase sodium.Because i live in Greece i have found that green olives and feta cheese help me.i use it as a snack when my blood pressure drops.Sometimes i eat a piece of cucumber with salt and that helps too.Of course in very bad crises nothing works.On these days the only thing that helps is having someone to hold your hand and tell you that everything will be fine.

As for the weather i think it does play a role.In extreme heat or cold i feel really sick.

I have memory problems too especially in the mornings when i wake up.Sometimes i feel lost and frightened and if someone talks to me i can't answer immediately and i can't look at him face to face...it's really weird.I'm not sure if i can describe the feeling.Later during the day i'm fine.(but sometimes i do forget things i have to do-or what i wanted to say)

Are you having severe symptoms at the moment?I understand it's hard to rest with two young children at home but it is absolutely necessary to be calm and relaxed.Try to find someone to help you with the housework and the children if possible.I have found that i when try to do cleaning or cooking i feel exhausted afterwards and i start having symptoms.

[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