danelle

YEAHHHHHH! I am trying to place an order right now and I have a question. I recently opened up a paypal account but have never used it. Do they just automatically take the money out of your checking account or do you have to wait for it to clear? I am just anxious to get mine and don't want to wait. If I need to, I will just pay with a credit card but it doesn't tell me how. It just automatically goes to my paypal. Long story short, will you get the money today if I use paypal??? Thanks

By the way, I too am losing weight and I can very rarely tolerate solid foods without much distress. Didn't mean to worry you, it was just some suggestions. It may just be the whole POTS thing that we are all so lucky to have

Amy, get an abdominal ultrasound done to focus on your gallbladder, but more importantly your liver. Were any of your other liver enzymes elevated? It is hard to say without some other testing what it is. Is your upper right quadrant(right under your ribcage) tender when you touch it? Does it get worse when you eat or does it matter?

Paige, haven't heard from you. Hope you are ok. If you are like me, you might be reading from time to time but too tired to post. I was just reading over your post and my response and wanted to clarify something. When I said that people who pass out go through a seizure like state-what I meant was that when a person passes out, they very often going into a shaking state that looks identical to a seizure. However, when they finally "pass out" the shaking stops. I read my post and I'm not sure that I made that as clear as I wanted to. For someone to have seizure activity for 7 minutes or for ANY length of time after actually passing all the way out is NOT normal or part of the passing out process. I am sorry if I mislead you. I just read over it and thought I needed to clarify that. (that is the nurse in me coming out-gotta be careful about those nurses notes! When you get a chance and feel like it, just let us know how you are. If you are reading posts but don't feel like posting, just know that we are all still thinking about you and wishing you good thoughts. Danelle

I just read your other posting. Sorry for not reading it first. You sound very much like me. I was 18 with my first child too. Your symptoms are similar to mine and it sounds like you have had the run around. Fortunately it wasn't 18 yrs !! Sorry I didn't read it first> Danelle

Welcome! I can only offer some input from my own experience. With my first pregnancy, I didn't seem to have any problems carrying my son. The delivery was difficult and I did end up with some preeclampsia right at the end of the pregnancy. But at that time I didn't have any symptoms of POTS. Immediately after delivery, they popped up-but it wasn't until 18 yrs later I got the right diagnosis. Dr Grubb seems to think that my pregnancy was the cause of my POTS, however, I can look back at my childhood and kind of wonder. With my second pregnancy, things were totally different. I constantly had tachycardia. I ranged from 110-200 all the time. I was miserable to put it nicely. I would end up in the ER about 4 times a week with my heart racing. I had seen a cardiologist but they didn't want to give me anything because they were afraid of what it would do to the baby. So they would just keep me in the ER for hours with oxygen until they could get my HR down. Towards the end of my pregnancy, my OB Dr was extremely concerned. I didn't look right to him one day, he checked my Hr and it was 170. He called my cardiologist and sent me over VIA his nurse immediately. There was conflict between the two drs. When I was 34 weeks I started having sx of CHF and went into premature labor. THey stopped it 3 times. They kept me in the hospital but still refused to give me any betablocker, they mainly kept me for the PTL. One morning I told my nurse that I was having contractions and she refused to believe me, I kept begging for her to check me or call the Dr. After 3 hours of asking, the dr finally came in. I was 6 cm dilated. the nurse apologized and my son was born 1 hour later. During labor and my quick delivery-thank goodness-my heart rate never got below 160 even with pushing(but I only had to push 3 times). THings got some better for a short period after my second son was born but soon flared up again. After seeing what I went through, my husband has a vasectomy when Derrick was 5 months old. He said we weren't going through that again with my health. Keep in mind, we still didn't know about POTS. I just found out a year ago and my boys are 19 and almost 17. I am not saying these things to discourage you or scare you, I just wanted to share my experience. Many people with POTS do wonderful with pregnancy. And things have changed dramatically in the OB field since then. That is my specialty as a nurse(or was-I am now having to file for disability) Sorry to rattle on, was there any specific questions you have?? I will try to help if I can. But I want to reemphasize, MANY people do great with pregnancy-and even though I didn't-I am still here!! Are you pregnant now? If you stated it already, I'm sorry. I haven't been on the site much lately due to feeling VERY POTSY!!! Hugs to you, Danelle

I am so sorry for your horrifying experience. A BP that low can be dangerous, being a nurse, we always treat a BP like that. What did they do as far as tests go? Did they test your electrolytes? Sometimes when a person passes out it appears that they are having a seizure but it is just part of the passing out process, HOWEVER, if it lasted 7 minutes, it sure sounds like a seizure to me. I can relate to the feeling that you are going to die. I have that feeling quite frequently lately, I am having lots of POTS problems too-just wanted you to know that you aren't alone. I find it hard to believe that they wouldn't treat your condition more seriously. If not the dysautonomia-because of the ignorance-but because of your actual readable symptoms and what your family witnessed. Get to a good Dr, go back to the ER somewhere and DEMAND they keep you and find out what the heck is going on. You are in my thoughts and prayers, hang in there and PLEASE update us as soon as you can. We will all be concerned until you do........... Many hugs to you, Danelle

Hi, does anyone know if Dr Grubb is receptive and cooperative with a pt getting their disability? Will he fill out the necessary report from your attorney? I ask because my attorney says I really need his input and need him to fill out a functional report for me in order to really help my case. I called Dr grubb's office and spoke with one of his unpleasant nurses today(some are pleasant). She told me that he doesn't deal with disability and that he has NO patients that are disabled. I know that isn't true because he told me himself that he had several. She said he MAY look at the form IF I come in for another visit, but that may be all. He definately couldn't fill it out while I was there and didn't know if he even would. She said he had stacks of them, which I find unacceptable. I know he is out of commission right now but I am talking about just in general. I'm not sure if she is telling the truth or not because she was very cold to me. I did explain to my attorney that I was physically not able to make it 12 hrs (or financially) but he insisted it would be in my best interest. I would be willing to try the trip-i think- if I knew I would have some success of getting help. My attorney said he would make it very simple for the doctor. Basically all he would have to do is check some boxes if they applied to me and that would be it. My question is, has anyone had any experience with Dr Grubb and disabilitly, and do you think it is worth putting myself through pure **** to get there??? Thanks for any replies!!

I think that is it. Would you mind sending me the link to the article? Thanks a bunch!!

Hi all, I am working on my reconsideration phase of the disability process and was lloking for an article I read on the 4 stages of POTS. Does anyone know where I can find it? If anyone knows of any other good articles or info that would be great too. I have been seraching the web as much as my body will let me and I have found a few good ones, but i could use more. I would really like to find that one if i could. I see an attorney this afternoon for a consult. Wish me luck!

Thanks MM, I'll try it again later

Katherine, just wanted you to know that the slide show isn't working. Don't know if it is just down or not working at all

Khudsonwv, How did you get your hearing so soon?? Every attorney I have talked to here (NC) said AFTER my second denial it would be a 16mo-2yr wait for a hearing. WHere do you live? ANY info you can give me would be very appreciated. I am going to turn in my stuff on Monday. You can email me at my regular email address if you want or you can post on here. I will check both. Thanks Mary, thanks for the info. I hope that my GP will be willing to do all that but I just don't know. I think she will write a letter for me though. I am still waiting to hear back from her. I would like to share with you what Ihave done so far. I will email it to you if I can(I will attempt) so check your email and let me know what you think. THanks bunches!! Thanks to everyone else too You all are so great!!!!

Thanks to everyone for their kind words. Needless to say, becasue I got so upset yesterday I had a horrible night and it is still continuing today. (They tachy, irregular beats, fatigue, pains etc) I live in NC. Don't know if anyone else has had any experience here with disability or not. On my list of disabilities were POTS, fibromyagia, CFS, anxiety/panic disorder, memory loss, depression, MVP, and hypoglycemia. THis is my first denial. I spoke with my worker today and he told me that I did better(with my case-as faar as replies, info gathering, info giving) than 90% of people who apply. He seems to be a very nice man. He told me not to get discouraged and give up. I agree but it is hard not to when you are virtually running out of money. We have nothing of value left to sell-honestly. WE have no equity in our doublewide mobile home, etc. I woke up angry and ready to fight this morning-between the symptoms. I have called many attorneys offices here and they say the wait for a hearing(if I get to that level) is 18mo-2yrs. I freaked. They sayhaving a supportive Dr will help. Well I haven't this far but finally went back to my old GP and she is willing to help me. I am waiting for calls back from the Dr, the attorney, Congressman Taylor's office, my psychologist. I have started working on the paperwork for reconsideration. I have only seen my GP once and the therapist once since my last attempt. I haven't seen anyone else, so that may hurt me I don't know. BUt what can anyone do??? We have tried every med int he world. ANywy, anyone have any other suggestions on what else I can send them with my paperwork to hlep my case? I am going to strive to get it to them on Monday. I just wnat to know what all would be beneficial. they already have all my medical records. Again, thanks to you all. I will FIGHT this thing to the end. I am not going to give up. That is not my style. Will Dr's who aren't supportive make a big difference on their decision? I would like for each Dr to walk in our POTSY little shoes for a week, the whole tune would change-and the fact that I have worked, am young, and have an education hurting my chances doesn't say much for our government. If I stayed home and sat on my rump, didn't attempt to help myself, etc I bet I would already have it! Thanks to ALL of you, I love you guys

I just got my denial, I have cried til I can barely see. They said that they realize that I am unable to do any of my past jobs but because of my education (RN), age 37 that I should be able to do something. I say $$$$$&^%*^(#*$&@(#*$&(@#&*$ to that!! I can't even walk through the house half the time!!!!!!! I am read y to give up. My family will now lose all we have and it's all my fault. this *****. Do they (SSDI) want me to get a job and just collapse or what, because it would happen-on the first day I can't wait the extra year or two to get SSDI, there is no way. My marriage, family, and self have suffered enough. This will put the nail in the coffin. I'm at a loss for words right now, maybe it wasn't such a good time to post. God help me and my family......Please send your prayers our way. Thanks for listening

Thanks you guys My worst symptoms right now are extreme fatigue, weakness, tachy, crazy rythyms, waking up in the middle of the night tachy, SOB, etc,not able to eat solids, shortness of breath-ok, i'll stop there. The only stressors that are "new" for me right now are the financial things and the feeling guilty about being helpless to my family in more ways than one. I know it isn't my fault but I still feel bad. And the not knowing when this thing will get a little better or atleast ease off just a little. I know my life will never be the same and I can accept that but I would atleast like to be able to walk in a store, go for a ride and visit or just walk outside a little. (it would be nice to take a shower without having to be babysat by my husband too) But you all are right, I need to focus on the positive. It could be much worse, I have a great husband and two wonderful boys and I still have my home. I am very lucky. That makes me smile about the MS thing, I was just making a comparison. I have been tested (MRI) and it was ruled out. But sometimes your so weak, you wonder if it is that or cancer or something-but I knwo it isn't. It's just that weak yucky feeling. I have been to Dr Grubb in Ohio not sure if I am up to another trip just yet. Fact, I know i'm not but maybe soon(I live in NC) Merrill, thanks for the quotes. They make a lot of sense. Guess I'm on one of those self pity rides right now. Thanks to all of you for your wonderful support and sorry if I didn't answer something. I will reread this tomorrow and see what I missed-brain fog kicking in You all are wonderful, I couldn't get through this thing without you all. Many cyber hugs to all of you and have a good night.

For those of you who know my story sorry to repeat myself. For those of you who don't, this is it in a nutshell. I have had POTS for 19 yrs now but just correctly diagnosed right at a year ago. I have had many problems with POTS over the yrs but have always bounced back(to some degree). Over the past year I have had a steady decline in my health. I very rarely have a tolerable day(maybe one every 2 months or so). I can't help but wonder how much worse this thing gets. I know it can get worse but my goodness. I am literally able to do much of nothing. This is even hard for me to do(write this) that's why I haven't posted much in a while. I don't like to be a complainer but I'll tell ya, this thing is getting to me. I had to quit my job in June. I applied for disability and am still waiting for my first response from them. My main concern, other than my family and finances, is my health. I just keep declining. Nothing seems to be working. I am doing the hose, fluids, salt, resting, meds I can tolerate, etc. I am just getting scared. I don't know when I am going to get somewhat better or atleast get to a "stable" level and quit declining. How far can this thing take you down? I'm beginning to feel like it may be like MS or something where you do continue to decline. This has been going on for atleast a year. I'm just really scared. Any advice or info on whether this thing can continue on a downhill slide would be appreciated. I have missed talking with you guys more than I realized. I can't wait for the bracelets to come out. Thanks and love to all

Thanks Merrill

Yeah, this whole POTS thing is whacky. I am always wearing my 30-40mm/Hg hose unless I'm in bed or in the shower. I literally pour salt into my gatorade and on all my food. I bet I am getting more salt than most. Are you still on the Florinef? Did you not have any side effects to it?

I meant to say an extra 25mg is what I have to take sometimes

Rita, I am on atenolol too. I have been for 16 yrs now. I started out at 6.25mg/day. It lowered my HR from 140's to 50 at first. Over the years I have had to increase my dose to keep my HR around 100-110 (that's just going from sitting to standing), needless to say, it isn't working near as well as I used to. I am now up to 37.5mg/day and I sometimes have to take an extra 12.5 to get it below 120. My only problem is that my BP runs very low anyway (usually 90's/50-60's) sometimes in the 80 range and up to the 100 range. Anyway, I need to take more to lower my HR but I can't because of my BP. I have tried too many other meds to name, including many other BB, florinef, midodrine, SSRI's, etc etc etc. The only other med I am on is Clonazepam. Just wondering, how long you have been on the atenolol and what your BP's are like. SOunds like you are able to go in the right direction with the med. Me-I'm going in the wrong direction!

I will keep you all posted. Thanks for your thoughts and prayers.

Paige, I have to put in my CONGRATS too!!! I read your post and it has given me hope again. I filed back in early July and am still waiting to hear. The last thing I have to do is go for a "physical" with their disability dr next Sat (16th), then they will make a decision. My case worker told me that I should know something by early Nov. I have had many ups and downs about this thing, more downs. I guess just doubting myself, even though my reality is so clear-I CAN"T DO IT ANYMORE. I can really relate to you. I loved my job as a nurse too and I find myself dreaming about it often, then waking up feeling empty. I, too hope to go back to nursing sometime in the future, the thought keeps me going. I can only hope and pray that I will be approved the first time around because we are in financial trouble already. Did you do anything special for your case? I am so happy for you and am glad the people are finally starting to realize that dysautonomia is a disabling problem. Please keep me in your thoughts and prayers, I feel so helpless right now. ANy advice you can give me would be aprreciated. Hope you have a stress free Christmas, now you can relax some and focus on your health!

I just thought of something else Sometimes when I get up my heart will beat much faster than when I'm sitting in bed but not necessarily real fast like other times. --------I will go from 60 in bed to 130 when I get up. Does anyone know if that is too high of a jump in HR or if that is just normal for POTS as well?

very blue, I wake up atleast 5 days a week(but usually 7) with the same problem(dizzy and feeling strange). I also am very shaky, cold and clammy, and the minute I try and get up the HR goes crazy. It takes me a good few hours to get to a "functional" level for me-which isn't saying a whole lot. Most of the time I get anxious with it to but others I do ok. I know what is going on but yet it still scares me very badly. Nina is right, I know first hand what she is trying to say because even though I have had this for years (but dx in Nov 03), I still get scared beyond words. I do have lots of anxiety and panic attacks and with all this stuff going on I can now add depression to my list. I wish I could afford some couseling for "coping" mechanisms with a chronic illness. If there is anyway at all you can afford it, give it a try. Please don't take that the wrong way-I think anyone with a chronic illness could use counseling. I know if it were possible, I would be there everyday-atleast for a while Good advice Nina! Hey, maybe you could do us some online counseling-HEHEHEHE