Donna F

To all that responded to my last post thanks, i couldnt respond back for some reason i cant sign on here but every few mths, so again thanks!! I am not doin well and need some advice I have been newly diagnosed finally, as i already done the research and new my case was unlike most, but have PAF, and bascially drs dont want to mess with me, i go to er, and they send me home and say theres nothin they can do for me, I have known from the beginning of this that Pots wasnt my only prb, most of us know our bodies, I want to talk with anyone with input on PAF, and anyone who may have this as well, if for some reason i cant sign on here after today, i am desperate for anyone to talk with on this matter, I need to know if it is gonna do one bit of good to go to Vanderbilt, cause im told told and know that my outlook is not good, at all. If anyone can help my email add is donforno@aol.com, i dont know why i cant get on this site, but i can read responses but cant usually respond, thanks to all of u for ur support donna f

I wanted to add im on 3 diff narcotic pain relievers, which im suppose to take daily, but I suffer a lot, only one that helps is demerol, and however i do know that the only way I will take it is if my bp is over 100/60, it will lower it, but one thing i noticed, but dont help me, but i do have various severe pain,but seems lortab dont lower bp as much as opiate based meds, so talk to doc about that Good luck donna F

Amy, Thanks for the advice, I have checked with local facilities but they kinda put it like if i need that kinda monitoring it would have to be paid thru a ins comp r something, idk, but im sure curves would love me, i would give them a daily thrill, and theyd prob put the ambulance on speed dial, god sounds awful but about the way it is!! Thanks for advice' donna F

Nina, Saw where u was able to get off the florinef, and take a ssri, was wondering which one would help b press , I attempted lowering my florinef slowly a while back to come off it, and well i ended up after getting it stopped, 2 days later in the er, with bp of 30, so i am desperate if theres any way to help raise bp, besides steroid, i hate it. I also take midodrine, but to be honest havent noticed it helpin at all!! Any advice would be appreciated, if i cant exercise it is a nightmare taking the florinef, which changed my appearance, to where some people dont recognize me at all!! Know it dont add weight to all but of course it did me, and i would give anything to find a diff med, so if anyone else knows as well by all means, but i would discuss with one of my drs, lol, as they all have diff opinions!! Thanks Donna F

Dont know about any of u, but Ive gotten leary of Ers, now if i go in with anything guess they think im crazy, they tell me we know u have a pain dr, which i never denied also that it is apparent and have been brought to their attention that i have been a reg in er at least monthly over the last yr, and usually get nausea and pain meds, and bad part is the docs there dont even understand nor try to listen about whats goin on, they told me it was normal to have bp of 155/100 and hr of 160, i was like freaking my rates before octwere ALWAYS like 80-90/48-60 tops and hr well pacer kicked it at anything below 60 but i know sit here because i feel like they think i want drugs, when if anything i want off some of this crap, does anyone else feel theyre treated like the "regulars at er" and not really evaluated at all? Donna F

Hey everyone, I havent been on here in a while!! Nice to be back, first of all Im very frustrated, and want to exercise, but for one Ive actually become worse than I was, I know have almost killer leg pain, esp at night, and the docs are saying I may have now not just POTs, but PAF, Chronic and basically if i dont make some sort of improvements, from what ive read well, not a good long term outcome. My prob is ive gained 35 lbs in a yr on florinef, second is when they put me on a treadmill, i tend to have a hr of almost 200 in the beginnin these days, i have a pacer, so now if i have to have a heart test they give me nuclear meds. Its frustrating, I use to have too low h/rate, now i have a machine at home because thru the whole month of Oct, my hr was between 125 and 150, so how do u exercise when ur hr soars goin 2 the bathroom, and frustratin part is i want so much to look and feel better, but when ur horrified to go to the gym for god sakes, dont want to embarrass myself,, and well docs tell me to take beta blocker again because of h.rate, however were dealin with the extreme low pressures again. So does anyone have any thing similiar, and if anyone could offer any advice all is so welcome, Im glad to be back, my computer i had wouldnt let me on so thank god to be back, and hopefully, i can stay, all of u have helped me so much in past!! Donna F

I thought i was the only one with urine prb! I have very frequent urination, burning, etc. I have went to gyn and urologist, and it smells too, i didntknow if they were overlooking somethin or what, but it is miserable for me. I have been told they see nothing but however, how can u urinate so much and have irritation and nothing be wrong, if u get any answers please pass my way Donna f

Hi Hope you get ur answers, its difficult with drs, Im on florinef, midodrine and a b-blocker. First off ill say florinef is mainly and only used 4 me cause it is the only thing to keep my pressure up. The betablocker was 2 times a day now just am cause pressure too low at night. Far as the midodrine yes its expensive,if i lost my ins i wouldnt take it, and as far as that i havent noticed it helping. My prob is the florinef, i have headaches, main complaint i have is i gained 35lbs so all dont have this but it is a concern, and if u dont have low blood press im not sure i would go on a long term steroid!! Hope all goes well Donna F

Melissa and Julie Thanks so much for ur thoughts and prayers. I greatly apprecitate u all!! I talked with 2 dff GI docs and they said they couldnt help me and i am going thurs to my 3rd surgeon, trying to get them to go in i guess, no one has any other answers but it will prb b another dead end rd. And u r right about it not showing on x-ray, i had severe prb couple yrs back and went to er and had ct and xray and they said i was fine, yea right, and 2 days later the doc did exploratory surg , suppose to b outpatient, well they had 2 call in 2 surgeons i was ina mess, and was told i would have died real soon. But i have had numerous stomach surgeries due to endemetriosis, etc before and aftermy hyst. But i thought after i had that all this would b over, wrong, but i also can c the docs scares, my pressure is unstable for 1, and they said more they go in more scarring, but if it is this bad again, dont we have no choice? I dont know i just dont want to end up in a emergency situation if surg is needed, as docs need to prepare for my pressure , etc. But pray this doc has answers, most just say they dont know what to tell me!! Scary, and as far as my family, well we are comin along slowly, i think i have let depression creep in on me and it can cause many former prb, so continue praying and all the best 2 u both. Oh just curious can either of u give me and input on sepsis or like i see lyme on here some?? I have had weird prob and need to be tested for things and need a start thanks Donna

Angela I will add this I have been on florinef since Oct when they put my pacer in and it works but i will say I have gained from 135 lbs to a lovely 170 so i tried to ween myself and did and my pressure dropped to the 30s, so back on it and not happy, but however if ur pressure isnt low i may recondsider it is something that they normally use for too low pressure. But just wanted to warn there are side effects, i hope u find the right meds Donna F

Sorry 2 hear of ur test, i had a bad exp with the same test!! I will say b happy that they are trying to help u, myself like others on here have ran into docs that r afraid of them. As far as the meds, i cant get Zofran cause of insurance but they can give u phenergan, i have always hated pain meds although over the last few mths i take them and have had to, but u dont want to rely of them they can be and are addictive. But at first the phenergan, used for nausea can cause drowsiness but u need rest anyways so maybe give it a try and i hope u can find answers. Praying for you Donna F

Thanks to everyone for ur thoughts, I am getting worse, things arent good here at all. I went to a gast doc, and they say they cant help me. As far as the testing, I had them all before and they showed clear in the er 2 days before the surgery i had and they have the records i would have died. But I dont know whats goin on, they agree that due to previous surgeries, i more likely do have and will have prb the rest of my life, however if i dont do anything i dont want to get to where it is ruptured and with my poor health right now i am not hardly able to go to the doc. And well as far as my family, i am on my own with 2 kids, they have pretty much left my existence. I guess it has been trying, ok I know Julie i told u my mom was there, and now well, i have had some prob in my life for one i was a alcoholic until 7 yrs ago, gave that up on my own, and but i seem to turn to some type of something not good when alone, as i am, despite my kids, but i had developed a little prb with gambling and went to my family and told them went to meetings etc, and had it ok for a while. The last couple wks i have been housebound too sick to even go outside, and have become angry and depressed well no one has wanted to listen and well i made a eve trip and spent pretty much what most make in a yr on disability, i imm called mom as i was suicidal as well as not wanting to face my kids, but they understood although hated it, but my family well i am 2 the point of i am gonna b alone if i get further down, but i am working on my prb, and prb need to see a psy, or someone. I am ashamed enough, but do u all understand that although one might get angry, 1 its my money, 2 i know 1 thing no matter what 1 of my kids do, as they do, i may not be happy but in a time of need im there, and deal with the rest later, my mom i guess needs counseling too everyone is telling her i am using this and manipulating her, and she dont even pay my bills, but anyways, its been real challenging for me lately, so please pray for me and my family we need some peace her as well as a doc who isnt scared of me!! Donna F

Hi all I havent been on in a while, I am not doin well, I had a intestinal prob a couple yrs ago that almost killed me, so i am afraid, The doc sent me to a surgeon last week cause he thinks i may have adhesions and it can rupture and kill u. Although i am curious if it is that or not, has anyone else had nausea with swelling and abd pain?? The surgeon orig said he would go in and do exploratory surg. but now since i was diag with this and my pressure is so unstable i cant find a doc to touch me, so should i lay down and be miserable or keep searchin for a doc, i am so depressed it is miserable, im living on pain killers and phenergan and it still isnt working. Anyone have any suggestions Donna F

I understand how u feel I have been to the ER many times and scary as it is, they ask me what they think they should do,ha! I was on florinef and due to 40lb weight gain, i was put on midodrine and adderall, and got off the florinef, about 3 days off the florinef and increased my midodrine to 2 3 times a day, it did just the opposite, when i take 5 mg 3 times a day i do ok , but my hr was dropping to almost nothing and so they had to put me back on the florinef, i am upset about that, but my doc said midodrine usually dont work for most long term, but i have noticed that the adderall gives me a little energy, and it helps with alertness and pressure as well, so maybe u can try that, but not sure u have to start slow. I wonder if i will ever feel normal again, very depressing, hope u r better Donna

well i think i am just too illiterate, or my computer is, as not only do i have to sign on every time, but i was not able to sign on for a month, kept saying i was a guest so who knows jst happy when i can get on Donna