danelle

Thanks Nina, you are truly one of a kind! I hope to mee you and the rest of the folks here someday. I am so thankful I found this site.

Thanks everyone This thing is draining to say the least. Corina-I admire your strength Ernie-wish I could afford to go see Dr Grubb again and be able to physically go as well(it's 11+hrs for me) Morgan-your response made me laugh, don't know how many are left around this joint MM-My sister says the same thing, just be assertive-which I typically am-i'm not quite sure where that aspect of me has gone I did call the GP's office back and they are supposed to fax me a copy of my records tomorrow-we'll see. Could he put lots of opinionated stuff in there or just the dictations? We have done all that Dr Grubb suggested as the course of treatment for me so I don't know what he expects Dr Grubb to do either, I just can't figure this out. If there where a miracle drug, we would all be better You know, it took me a long time to get the courage just to take the meds but I did. Oh well, it will all work out -I have faith. Just having a bad day I guess.

I'm happy for you Sue!

oops, i meant 2 not a

I am SOOOOOOOOOOO happy for you I know what a struggle you must have went through. WOuld you mind to read my new post and respond. I just posted it. Thanks and Congrats!!! Danelle

Hi all, I just spoke with my GP, let me just give you a little run down of what is going on: 1. I have now tried corgard, cardizem, lopressor, sectral, zoloft, wellbutrin, florinef, midodrine, clonidine, mestinon without success-only side effects. I have been taking atenolol(BB) and clonazepam for yrs but they only help somewhat. 2. I had to quite my wonderful job back in June because I was unable to function-I fought it so hard and should have quit sooner. 3. I have had POTS for atleast 19 yrs now but only dx last Nov., it has progressively gotten worse to a point of not being able to do ANYTHING, just walk to the bathroom, couch, at that's about the sum of it. My husband is so afraid I am headed towards a wheelchair and my thoughts aren't far behind him although I would never tell him that. 4. I am a fighter. I don't give up and the last thing I want is for my body to make me do so but it has 5. I struggled thru nursing school being a mother of 2, wife and working full-time, I loved my job and made wonderful money and it made me feel great feelings. 6. My GP, who I have now seen 3 times, has tried me on 3 of these meds by the advice of dr grubb told me that if they didn't work that he would declare me disabled. When the meds failed, he changed his mind. He says I need to go back to dr grubb and see what he wants to do or what he thinks. I have called grubb's office and they tell me to go back to the GP. 7. I have had no income since june and luckily I filed for my disability at that time but they are waiting for info from my GP-I explained to the GP that they only needed the dictated notes of my visits-not a recommendation and he still doesn't want to send them. He says that this is treatable and that I don't need disability but he has no suggestions on what else to try. meanwhile my family is suffering, i am suffering physically-POTS, CFS, fibromyalgia, etc. 8, I can't help but think that people think that I am trying to live off the government. That is the last thing I want. Goodness, I would only get 800/month and I could make that in 4 days of work a month IFFFFFFFFF i were able to work. 9. AM I fighting a losing battle because no MD will help or "agree" that I am disabled(and I can't stress enough how incompacitated I am) What oh what do I do?? SOmeone please give me some responses, I am crying my eyes out. I am a good person and only want to make ends meet, the LAST thing I want is to feel this way and be a TOTAL prisoner to my body and all it's ailments. : thanks

Nina, This is so exciting!!! How much money is needed to get the bracelets printed? I so wish that I was working right now and could afford to give a huge donation. I would do it in a second. I think the bracelets you selected sound great. Just a question, will they scratch easily? I am so glad that you will have something about dysautonomia on them. I am going to wear mine proudly. Next question, I know you need the money ASAP to get this going but I was wondering when is the latest you could get it? I was trying to think if there is some kind of fundraiser I could do to raise money for them but I know it would take a little time to do. Anyone have any suggestions on a fundraiser so we can get this thing going?? Wish we all lived close together and put our foggy brains together to come up with something Danelle

Hi, I have been on a betablocker for 16 yrs. I take atenolol. I started out on a tiny dose but I gradually had to increase my dose to a "normal" dose, ususally 50mg/d. It helps keep the real rapid stuff away(most of the time, not always) but I still continue to have tachy on a daily basis, just not as severe. I don't know what I would do without my BB. I really believe I couldn't survive without it. That's how bad my tachy was. Like I said, yes I still have it daily but it has "toned down" for the most part. The only things that i have noticed taking it is that I am tired all the time BUT I have CFS, fibro, and POTS and I was like that before the med so not sure if it is related, I kinda doubt it. the other thing is SOB, once again can be from the POTS and I had it before. And very decreased sexdrive but I haven't had that the whole time, just over the past year of so-probably not related to the BB either. I don't know about anyone else but I sure wouldn't give mine up for anything. I feel like it has been a "lifesaver" for me. Hope this helps!! Danelle

My BP's and HR's both are wacked out. You definately aren't alone. I can range from 80's/40's to 160's/100's and HR 60's-180+. It is unpredictable but mine does do what yours does as well. It's all part of our crazy ANS! Wishing us all more stable vital signs and symptoms

Sue, I'm sending lots of good thoughts and prayers your way for your appt tomorrow. Please let us know how it goes and know we will be thinking of you Hugs, Danelle

Glad you feel better Stacey and hope you have a wonderful evening!! Let us know how it goes!! MM-thanks for the great websites

Yea!! I kept waiting for your update! I bet it will all be over with for you soon and you can relax. Congrats!!! Danelle

Stacey, First of all Happy Birthday I can relate to you exactly. I am also 37(38 in Nov) I am feeling bad today too, it is the 2nd anniversary of my father's passing today, who I was very close to. Anyway, I feel exactly like you. I have been sick with this thing since the age of 18-19. It was really bad at first but they kept misdiagnosing me, and I thought I was just going crazy because my mother had just died, I was a newlywed of 1 1/2 yrs and had a brand new baby(yes I started VERY early). Things slowly got some better but as time as gone by I have had more bad times than good. Not being able to leave the house, do ANYTHING, etc. Couldn't work for yrs. I did get better enough to got to school and work some but it was a struggle.(this is over a 20 yr period so I am trying to sum it up). Over the past 6-8 months I have been just like you. As a matter of fact, I had to resign from my job of 10 yrs in June (RN) because of this sucky thing called POTS. I rarely get out of the house-maybe once or twice in 2 weeks and that is only if my husband is with me and for a short while. I feel useless and very sad too. Right now I am having a hard time getting a dr to cooperate with me trying to get my disability. My GP wants me to get Grubb to do it and Grubb, who has only seen me one time, says my GP has to do it because he is the one that is seeing me and treating me-which makes sense to me. So I am waiting for another call from my GP as we speak. URGHHHH!! Meanwhile, my bills are piling up rapidly. I didn't say these things to make you feel bad for me, I just want you to know that you aren't alone, not at all. You said how I feel to a "T". I sometimes wonder why such a debilitating thing was ever "created"(for a lack of a better word). I truly believe that POTS and all that comes with it, is just as debilitating as cancer, heart disease, MS, etc-not to demean any of those other herendous things but I just think that we sometimes get looked over far too often and dr's don;t see what we are really going trhough, it is enough to make even the happiest person downright depressed. Try and take today just for you, try and forget about your POTS the best you can even if you feel crummy and pamper yourself with a bubblebath, massage, or just reading a good book or crashing on the couch. If you can, sit on the porch for even just a few minutes. Sometimes if I force myself to go outside if it is just for 5 minutes I think it gives me a little lift. Hang in there on the baby thing. You do have time left. I was working on the mother-baby floor when I resigned and I saw women having babies in their fifties!! you're still a young chick! Everyone probably knows my new motto by now but I am learning to live with it " One day at a time, one hour at a time, one moment at a time" God bless and so many hugs sent your way, check your personal email!! Danelle

Sue, You have had enough "bad luck" lately. You are in my thoughts and prayers and I am sending big strong hugs your way. Please let us know what you find out.

Thanks to everyone for their responses and wonderful ideas, I am going to get the book!! Yeah, I have seen a cardiologist for 18+ yrs now, more than one and in more than one state. i won't get into the details of our conversations other than to say that I have been told(prior to my POTS dx) that I am a healthy young female. I have been treated differently since my dx but basically the same reaction to my arrythmias. When my husband had the same problems with arrythmias, he was worked up for a MI, kept in the hospital, given a nitro and heparin drip and had tons of tests, including a heart cath-which I also have had but it was a different story. I don't think that we will ever get out of the stigma of the difference in how men and women are treated-at the same age, condition etc. not during our lifetime anyway. ANyway, your posts have been very helpful and reassuring to me. Unfortunately, this post may come up from me again when things get bad again(worse than they are) and I start doubting things again but I will try and look back at this one first. Thanks to you all, many hugs sent to all of you Danelle

I have this problem too. I won't get up at night unless I am about to bust. I also have lots of problems first thing in the morning. I try and put my hose on as soon as I get up and drink lots of fluids, sometimes it helps, sometimes it doesn't. I have been on a beta blocker for years and still have the problems with the meds. I can't imagine going off my atenolol. I have tried a few times and within a few days my resting heart rate is 120's, then when I stand it goes up to as high as 180 and up. That is with tappering my med very slowly, so it looks like I will be on it for the rest of my life. I too get up very slowly when I have to get up, but like you said, you can just be laying completely still and off your heart goes-boy does it have a mind of it's own. Wish Ihad more suggestions for you but what everyone else has said are wonderful suggestions. Hang in there

Hi, I'm so sorry you are having problems I am not sure but I think you may qualify for something called SSI-this is different than SSDI. I don't know all the ins and outs of it but check into it if you haven't already. I think you may qualify. It goes through the social security office as well. I think it is terrible that we as a supposedly "rich" nation can't help our own people. We are too busy hleping other nations when there are SOOOOO many americans that need help. Try and keep your chin up((I know it it hard) and please keep us updated. Hugs and prayers are being sent your way, Danelle

Gayla, I'm sure everything will go just fine. It sounds like the attorney really thinks that too. You will be in my thoughts and prayers and I will wait to get a report from you tomorrow!!! I am going through the same thing right now but I am in the "early stages" of the disability process. I'm sure I have a long way to go. Try not to be too nervous, just think, this thing could be over for you and you will finally get your disability!!! Positive thoughts are coming your way and please let us know how it goes! Hugs and prayers

Gosh, you sound like me to a "T". I am exactly the same way. I mean exactly. I have had numerous bad experiences with meds and am so sensitive to them anyway. It took me a LONG time to get to the point of even trying a miniscule amount of what the dr prescribed but finally gave the meds a chance. right now my dr is wanting me to try mestinon, and if that doesn't help then adderal. I am going to try the mestinon tonight-although I am scared beyond words but I am going to when my husband gets home so he can be with me. Have you considered trying the meds when someone you really trust is with you and can help you if you need help? That has helped me. I am also going to go to a counselor next week(if we have the money) who is going to try some biofeedback with me on certain issues that I have-anxiety, panic, medical scares, coping, etc. Please know you aren't alone, I can honestly say that I think I am the most scared person in the world to try a new medication. Please let us know how you are and keep us updated. I'll be thinking about you, good luck!

Thank for your responses. I have heard others say the same thing about the adderal. I don't know if i will get the courage to try it out or not though, just because of such bad experiences with meds. I guess I am going to try the mestinon tonight and see what happens. The dr told me that it will work for about 10% of POTS pts so who knows. I appreciate you all here and I am sorry I have neglected to respond to some of your posts lately. Just been in the dumps. thanks bunches

Thank you! I am on atenolol every day, have been for 15 yrs. But I will try the Magnesium too. I don't know why this gets to me. I guess it's when they get so irregular that you can't breath good and you feel like your gonna pass out. The last time this happened and I had to call the ambulance, he told me I was in AFib-I stayed that way all the way to the hospital. Then when I got there it broke. I find that coughing will SOMETIMES get me back into a more reg rythm but not always. THis is so frustrating. I am tired of letting this fear control me. It's just a vicious cycle i guess. your quick response means the world to me

Hi, I am having lots of irreg beats-PVC's, PAC's, runs, flutters, etc over the past day or so. enough to where it is scaring me. I did see the dr today(not specifically for that) but didn't seem concerned. Just wondering if I could get a little reassurance from someone. I have been through this thousands of times but each time it feels a little different and somehow "worse" than before. I just don't want to die and leave my kids behind. I know I haven't posted much lately but have been down and haven't had much energy at all but I sure would appreciate any responses. Sorry I haven't been there for you all lately thanks a bunch

Thanks

I was just wondering if anyone knew of any good sites to get informative info on meds. Ihave tried so many meds lately and I would like to do some research. I have found that if you just type in the med name, you will get sites but the info on those is very little and generic. I want something that is detailed.

I saw my dr. today and we have two meds left to try-mestinon and adderal. He wants me to try the mestinon first. He says dr. Grubb told him if it is going to work, it wll work almost immediately or just do nothing at all. Questions: 1. has anyone tried mestinon and what was your experience? 2. both my gp(who is familiar withPOTS-yeah) and my regular cardio are very reluctant for me to try adderal because of my heart rate and rythms but it is my last resort if the mestinon doesn't work. anyone tried this and what happened? thanks