tinkerbella

I'm sorry your having such a difficult time. morgan is like an angel with her words of knowledge and wisdom. i will stop right now and say a prayer for you. when i had mine it was done though my neck awake without meds, prior i had to go into a private room with my guy at the time. we were told i could die and he kinda freaked. i knew what they were going to say, shortly after we split up. i felt all the pvc stuff and they took all kinds of pics. they i had to go have a level 2 cardic stress test. I had been there before and my first test came back suggestive of congestive heart failure. So, I was rather concerned. The staff treated me like i was special. i thought for sure that i was going to die that day. They had to get a line into my main artery in my wrist. the left one blew out the all over the doc and the room. the second was just as messy but finally made it in. was the hardest test ever. after they said if i started bleeding to put pressure on it and if it didn't stop in 10 mins had to go to the closest er. i never did bleed after. but i was so physically and emotionally exhausted and then the wait for the results. was the worst of all. just what is an ablation? they want to do one on me along with a pace maker. I'll be sending you good thoughts and prayers!

sorry you didn't get to go. i wish in the hospital the could have a laptop to use for patients with the assistance of an aid to gmail the family. as with gmail there are free voice and video chat. the floor would have to have an account and a camera. most laptops have them built in, and you on the other end have to have an email account with gmail. it's great, free long distance phone and to visit with your loved ones. it has enriched my life so much. also if you download jabber you can have a a family chat of up to 3 people. (i think it's 3 it may be more) it's wonderful. even friends here could have a video party! I do hope the best for your dad. my thoughts and prayers are with you.

i worked 60 plus hours a week always feeling like i was ging to pass out . i would drive home crying in pain, exhausted, so thristy. was working 3 jobs at once. that all ended in 1999. i have slowly lost myself.

i know i just get everything if someone sick comes near me and i get it worse. they get it for 2 days. i get it for 10 and in the hospital.

potsgirl, i give you a lot of courage for talking about this and my thoughts and prayers are with you. you will manage this although right now it seems like one more thing. there are new meds out there now and like someone said before you have nothing to be ashame of. in fact that's one of the questions they ask when you first see the as/neuro for pots is if you have ever had herpes or a herpes like infection. They are all related in some way or another. try any breathe easy potgirl, as stress only makes all of these things worse. here you are loved unconditionally, so feel free to talk any time at all about anything. to me you are one brave woman. good luck, i sure things will have a way of working out once you learn all about treating and living with it. I'm glad you're going for a second opinion, but whatever it is you be Ok. It's the unknown that is scary. Hang in there we are rooting for you! ((((((HUGS))))))

i get chocking with chest pain, heart beat and pressure in ears. now hissing drives me crazy!!!!! pressure is much better when they adjust my thyroid. i play background noise all the time to try to mask it we are not alone, can you hear me now? LOL?

the more i drink the more i have to use the bathroom. with infusion i hold it longer. with regards to the port they can use very vein I've got, then make a map with an x-ray before i go that route. my friend was septic for over 2 years. died they brought her back and never found the source was the port untill 4 months ago. I'm not taking that risk. plus with a port they want you at home, I'm a high risk for infection. living alone I'd rather be monitored, and it's at least one day a week an intake is done on me. It's like having a visiting nurse but better. the last one I had was useless. the more i try to hydrate before infusion my veins seem slightly better. I'm trying something new today, more details to come. I think I really like it! New hydration product. I'll get back to you later.

i use a foam bed wedge with a memory pillow on top of that. when my legs are real swollen or i've had a fall an a broken foot or sprain i swao it out for my feet and just use two large pillows. it has taken away the feeling of pressure on my chest when i would wake up and try to breathe. what does it do for others?

oh how silly of me, I'm not afraid, my son and i both have compromised immune systems, that last minor flu put in the hospital for 6 very sick days. with many more at home. i wasn't able to look at salsa and chips for over a year. Sorry all, i wasn't trying to alarm anyone, as i stated earlier what ever will be will be. I guess I meant to say, it would be wise to stay out of those areas like unnecessary dr. visits and hospitals till things calm down and they will if you immune system is compromised. hey everyone , don't worry be happy!

My son just called and they have shut down the high school in the next town and we have people in the hospital right down the street from me now. I may need to cancel my hydration if all this keeps up.

I have it, do you fall a lot? That was one of the first things they found wrong with me and wanted to know why. I have been told to never drink alcohol. That was no problem, don't like alcohol. Told me it would make things worse. A neuro would dx this with an emg. It is part of pots I was told. I never feel anything in my hands, feet, arms, legs. Hurt myself without even knowing it all the time. I left that neuro as he was really rude, but he finally dx my neuropahy. THEN it was onward to figure ou what was really wrong with me. Check it out if you are having tingling and numbness. let us know how you make out. Bella

i though i had ADD FOR YEARS and must admit it has helped until the addition to the BP meds, i feel they make us appear to forget things, lose our thoughts, slow down our thinking. now i'm reading here about, "brain fog" so was my ADD really brain fog when i never knew i had pots but had all the symptoms? Rachel, under helpers you listed your husband. i thought that was so very sweet. that man i loved was non committal but called me his wifey for 7 years of lies till I kicked him out of my life when he left me in an er alone to go off and drink. it's been a year now, how does one find a husband or a good man with all our medical baggage and can't get out to meet anyone? maybe this wasn't the right place to ask, but i just noticed and i've feeling really blue tonight.

I do, as I'm my doctor's most challenging case and get two large bags once a week in the infusion clinic at the hospital. It takes from 8 am to 2 pm on a good day if they can access my veins. I won't let them put in a porta cath right now. I'm lucky to get a bed not everyone gets a bed there. They save the same bed for me every week. I pass out as soon as I get the iv in. I used to draw and write, now I'm so tired. It had to be very slow at first so when I first started, it was one bag and it took the whole day. Going in too fast can cause congestive heart failure. I have to have my postural pressures takes at different times to be safe. I watched a room mate go into congestive heart failure from too much fluids too fast. There have been times I have had to be admitted, have ekgs, as results of chest pains, be sent for echos but it took quite a long time to work up too 2 bags. First 1 then 1 1/2, now 2. Now they are talking 2 days. It costs 4,000 a month and up depending upon what tests are ordered for the day. I get two full meals that day. I feel great after and for the first time in my life I have stopped licking my lips. My insurance covers it right now. Every time I see my neuro she tells me I am still so dry, and she believes I can't ever get enough fluids. I have seen another patient from my doctor's office there and she get a chair. I would never make it in a recliner. I'm truly blessed. I have such a wonderful cardio that started this for me. I Really appreciate being able to to taken care of in the hospital as I'm alone and I'm given such wonderful care by a staff that I have gotten to know and they know all about Pots and understand what my life is like and try to make my one day day as nice as possible. They completely go over everything everything each week so it's like keeping an update on me encase I'm admitted everything is right on file. Right after, My pressures are always almost perfect. But, I lose fluids so fast as I can't keep them in me. I'm tired after from the long ordeal from getting a cab to and from the hospital. If you can get, it I highly recommend it.

I'm 5 4 1/2 120 but, will retain fluids and bloated recently with all the salt and mestinon. So day to day my weight my weight can vary and my rings can fit one day any not the next. But, I'm still adorable! I look better since all the meds believe it or not. That's half the problem of getting people to understand there's something wrong with me.

It's a constant challenge allergic to almost everything newest thing to try to blunt the heart rate is 800 mg ibuprofen 3 times a day, mestinon 60 60 30 mg, clonidine 1/2 tab am pm. once a week hydration at hospital for day, Gatorade by gallons, electrolytes Popsicles, sea salt water and soup/ broth/v8. I'm fighting off having an ablation and pacing. I'll still haven't given in to the porta cath yet. I think I'll ask for 2 days of hydration next. That's the most helpful. Good Luck!

mae, you sound very scared tonight. I hope you can put your faith in your higher power and try to let go and try to relax. The stress will only weaken our immune system. And you being fearful, will make your children scared. do you really want your children living in fear? surround your family in white light of safety and teach them to wash their hands and use common sense. Use masks in hospitals er's, airplanes, airports, areas where it is necessary. It is in my area, 1/2 hour from me, but they were in mexico and they have been confined. there is also one more case of it in massachusetts waiting for results. I'm not going to stop my life, if it hits me then it was in the cards long before we ever heard of the swine flu. we are all hanging here by a thread mae, we have to live for today the best we can, even if it's from our beds. we or are children could have an accident at any moment that could end our lives, but we can't protect and keep everyone in a glass bubble that can't be broken. we all need to be enjoying our families and making happy memories while we are here on making precious planet time. We just all need to be calm, not panic and stay positive. I have masks if I need them, but I don't need them now. I think the President gave good points on what to do tonight. I hope you can feel calmer about all this and I will pray for all of us and all our loved ones also, that we will all be safe from this swine virus.

Just got home from my weekly infusion. The woman who runs the front desk is now one of my best friends. All hospitals are set up with masks, hand sanitizer, and Kleenex. People are told to go to their doctors if they feel the signs of the flu, which can be tough tough for me. ( worst headache of your life, joint pain, cough, cold symptoms, may have diarrhea or gastro ) So my nurse told me they just use tamiflu to treat everyone just to make sure. Masks are getting hard to find at medical supply, drug stores and people may have to go to building supply stores for masks. Lets all be safe here and first of all don't panic, as I think the stress they are causing is not a good thing. When appropriate where a mask, always wash your hands, use your common sense, pay attention to news alerts. And always stay hydrated! Program our brains that we won't get this, I often eat olives stuffed in garlic from trader joes when I get sick and just watch my bp as the garlic can lower it. but, I'll call the doc this time, even if it's a false alarm. Be well everyone!

congrats! on your new arrival! I wish you the best! T here's nothing like a furry friend!

sorry, i must have been sleep writing again.

I find the best docs will let you bypass the nurse/sec. and I send a personal email that way I get my message across instead of playing telephone, I got tired of too many messages returned to me all screwed up. I wish you the best MAXINE! I know our lives get soooo filled with drama, that sometimes I have to laugh, not at you but at just how complicated life can get living with this medical condition that is really just coming into light. In fact, if it wasn't for my great sense of humor I'd probably be locked up in the psych ward right now. My own weekly drama could be a sitcom. Maybe we should create one, and teach this world what it's like to walk in our shoes. So be well and don't be afraid of what anyone thinks, if you have to just write a letter and bring it and let the doc the read what you've have to say do what is the most time saving, yet gets the point across. I use check lists. All my visits are long ones, I feel very blessed that we have doctors out there with kindness, patience, in a time when most spend 15 mins with you. Be direct, it's your body!

About the chronic pain well i have it as well and it's not in my head. I cry myself to sleep with the pains in my legs. oh, everything hurts! Today I'm done in from trying to be a good mommie and grand mommie over the past few days. payback the worst! oh nooooo a huge heat wave is passing through my body, i knew i shouldn't have stood up and walked as I can feel my pressured dropping right now. Every time i start to sweat I close to passing out. Luckly for me I'm lying down.

I always feel like I'm going to and have to sit, lay, drink or eat something. thirst is like crazy and lately hungry. horrors in the middle of the night with low BP. I trip and fall going to the kitchen to find food and while there check my BP. What a Trip!

hi i'll stay with Gatorade as sorbitol is terrible on me. i stay away from fake sugars, due to the relationship to them and ms. read this http://www.foodintol.com/food_intolerance/hot_ibs.htm i already have this problem, don't need to make it worse. If i don't want the sugar i just use water and sea salt and they sell many different kinds i just found out. I like that Gatorade come in packets that i can keep in my bag to add to my water bottle and just not carry the extra weight around. I'm feeling under the weather today, hope it not the flu, we all need to be very careful. We should always have extra on hand. they make a sugarfree Gatorade around here! I buy electrolyte/sports Popsicles at the Christmas Tree shops for 1 dollar a box i think 24 are in there. Cheers everyone as we drink away!

thank you Dizzy Dame. I'm long over due to be checked out need to check the eyes out also retinal hole. BellaMia

i feel really bad for you, i think i know what you mean. a couple of things come to my mind. i have to take ritalin, as I was dx with ADD years ago. i stopped it a few years ago after my heart suddenly went crazy. after being bed bound after being laid up with a sprain ankle, then breaking my foot all from my foot having pins and needles (pre-pots dx) after started bp meds the brain fog was bad and i was told it was the meds. i was reassured i would be in control as soon as i took off a few pounds and to stick it out.soons i was on many meds that i needed concerta to stay awake. off came the weight, but if i ever ate raisins, dried fruit, sugar, candy, accidentally got caffine i was in full sugar overload and it felt like a panic attack. If i forgot to eat i got the shakes and was told to eat lots of small meals all day long. large meals make your pressure go way up. if i went to fast food restraunt and had cheese burger fries and a large shake i'd be crazy after. i had an addiction to all these things yet they all made me wired and sick. more meds to try as i'm a challenge as my dr calls me more brain fog. then i'm told that topamax is called dopeamax by my therapist. I have to have it for the migraines and it keeps my weight normal.(as normal as one can be with all the salt) i really believe it's the blood pressure meds they take away your brain. I have to work really hard to stay with the program, so to speak. THEN, when my bp is low I'm like a lost my ability to speak, don't even remember how old i am or what year it is. i could take my meds and 5 mins LATER NOT REMEMBER! ALSO, there some wacky drop in my bloop sugar going on. my neuro told me that pots patients have blood sugar problems, and their have been times when i've been 40 with a low bp. I don't know what was the question you asked was now? LOL We have to laugh to keep going. these days i'm going nowhere fast. i wish you the best. I'm starting to crumble now, sorry. can't wait for hydration tomorrow. may you all have sweet dreams tonihj