danelle

Good Luck Jess!! We will be praying for you. Let us know how you all are as soon as you can. Drink lots of fluids!!! God Bless, Danelle

Congrats!!! Good luck at your hearing and keep us updated!!!

Has anyone had fastheart rate or irregular heartbeats with zoloft, what other side effect has anyone else had?

Has anyone tried Clonidine and if so, did it work for you, what side effects does it have? My GP just gave me a prescription for zoloft and clonodine. I am already on clonazapam and atenolol but he said I would eventually be able to maybe wean off the atenolol. Ihave been on it for 16 yrs.

Thanks for all the support!! I know it is going to be a long road but I will continue to fight. I tried to see what I could do again this weekend and it was virtually nothing!!! Sometimes I just doubt myself I guess, but logically, I know I CAN"T do it. Don't know how many times I have to "show" myself by making my body suffer??? Thanks again, Danelle

Morgan, Did you do anything special?? If you don't mind my asking, did you have many dx or was POTS your main dx?

Forgot to mention: The attorney's office told me that there is atleast an 18 month wait at this point to get to the judge level, but you can't get to that level without going through the others first>

Hi, I had to file for disability a few weeks back d/t my POTS/fibro/CFS/panic attacks/. I am beginning to wonder if it is a losing battle. I just spoke with an attorney's office and they said that because of my age(37) and because I have some education(RN) that it will probably be unlikely that I get it. She said the process WILL take about 3 yrs total before I even get a final answer(because we will have to go to the judge level). I am SOOO discouraged. I know that there is nothing I can do. I can't work and I can barely function at home. I know people say not to give up but there is ABSOLUTELY no way possible for us to survive until then financially. Right now we are living off of money from where we sold my husband's truck. He makes enough to pay the bills but there is not a cent left. Then we still have to buy groceries, gas, necessities, etc. I have only been out of work for a little over a month now and we are having to use more than we can for groceries, etc. the money from the sell of the truck won't even last a year. We aren't blowing anything at all. We are pinching every penny and have cut what bills could be cut. I feel like I have soooo failed my family and things will only get much worse as time goes on. Oh dear.... Idon't know if my marriage will make it through this or not. Someone please talk with me, I feel really desperate right now. ANy suggestions?? Thanks for listening.

DITTO

Yeah, that has become my new motto "One day at at time", it may sound corny but it seems to keep me from getting too overwhelmed (for the most part). There are some days I even take one hour at a time. Hang in there my fellow nurse and POTS friend, we will make it just fine!! Hugs, Danelle

khudsonwv, How did it go today??

Hi, I am so sorry you are feeling so badly. I am a 37 yr old who has had POTS since the age of 18 but only dx just this year. Before taking atenolol my HR would do just like yours. It is one of the scariest things a person can go through. I still have spells when it does that crazy stuff and beats really fast, trips to ER etc. I know people try and understand but noone truly can until they have actually walked in our shoes. Fortunately you have found a slew of us who know where you are coming from and can understand. I don't have AIM (I don't think) or I would write you there. Have you had lots of tests done to determine for sure you have POTS? Please hang in there and try to not be too afraid(I'm the pot calling the kettle black!!) Anytime you need us, please don't hesitate to get on here and post. There is always someone around to talk to who truly understands. I found the most comfort from this site because I finally realized I wasn't alone in what was going on with my body-not only physically but emotionally as well. This site has been a Godsend to me. The support is overwhelming!! Keep us updated. Has your dr put you on something to slow your HR down?? danelle

Paige, Your post sounds like me to a "T". I am having ALL the same feelings that you are. My marriage of 20 yrs is struggling as well. I feel like I have failed everyone, including myself too. I had to give up my job last month after fighting this thing with all my might. It just wasn't enough. I worked so hard to get my RN degree(Married with2 children and working too)!! I was making very good money ($32/hr) and I had to give it up. I was supposed to start back to school this fall as well, I had already received a scholarship and everything but I physically just can't. I ended up having to file for SSDI 2 weeks ago and we are already feeling the affects of my income being gone. My teenage sons have had to get jobs to help out-which makes me feel less than human. Everyone had given such great ideas and advice and I will try and learn from them as well but sometimes it is just hard and you do get down, real down. I am there with you and just wanted you to know that. Please hang in there and try and take some of the positive things others have said to help yourself and I shall do the same. Thanks to everyone for your positive input and support, it sure does help Many hugs sent your way, keep us updated, Danelle

Thanks for the reply I hate to know that you are going through this too but it is nice to know that I'm not alone. I just wish I could shake the overwhelming terror when this happens. It's like over half of my life I live in complete terror of this thing and I am sick of the fear. I do try and go outside sometimes when it isn't too hot but for the most part, I stay inside just waiting for it to happen again I know that sounds ridiculous and it is hard for me to admit but it is my truth and my world for right now. About the BP cuff, it is an excellent idea!! I have one too(I am a nurse too) but I recommend the manual ones. The ones that you have to listen to yourself or have someone else take it for you. They are cheaper but MUCH more accurate. I have actually done a little study on this myself(maybe I should say trial). I tried both on several people on many different occasions and there can be a big difference in readings between them. SOme of the things that can cause the automatic ones to be inaccurate are movement, clothing, heartbeat on the weaker side, being or becoming miscalibrated, etc. This is just FYI stuff. But thought I would pass it along!! Wishing your heart a nice slow, regular rythym, Danelle

khudsonwv, I am sending much good wishes your way I'm sure things will go fine. Please keep us updated. How long have you been in the process of trying to get your disability? Do you have any other ailments as well? I just applied 2 weeks ago so I know I have a long road ahead of me but I am willing to take that road because I fought for so long trying to keep going at work and at home and realized that it was not possible after many trips to the ER, being sent home from work, not being able to function, etc. Good luck!!!! Hope to hear from you tomorrow afternoon! Danelle

JLB, I ws wondering, do you ever get the feeling with these irregularities that there is a machine gun firing in your chest or the feeling that all of the sudden it's a BUNCH or premature beats in a row? I do and it makes me lose my breath, makes me dizzy and scares the crap out of me!! It will happen regardless if I am up moving around, sitting on the couch, or laying in bed. It even wakes me up at night, now that is scary!! Like I said, I have had these sx for years, like you, but they have gotten worse lately. Now I am afraid to go ANYWHERE without my husband and I am afraid to be home alone. I have had the ER trips as well but it seems like the ambulance takes forever to get here(actually we have timed them-average is 6-10 minutes) I'm just afraid that I am going to die when this happens and I don't know how to shake the overwhelming fear and panic that has taken control of me. Sometimes if I cough I can control it, sometimes not. It feels like there is a rollercoaster ride going on in my heart sometimes(literally). Anyone else with this problem too??????????

Thanks for the info! I will have my husband pick up some baking soda at the store. He is there as we speak>

Blackwolf, Just read your post. I am speechless. I can only say that I will send much prayer your way and hope that things will only get better from here. Wow, two huge whammys at once. I am so sorry. No wonder you are not feeling well. I sure hope that you are doing better now, I know it will be a long road for you and your family but I hope that you can find some peace(if that even makes sense) and be able to atleast take care of yourself and your daughter. Lord knows this POTS thing is hard enough without those stressors but with them added on-----I need not say more. However, like you said, You all WILL survive and you will be able to get on with your lives. Just take it one day at a time. God Bless you and your family and please keep us updated!

Susan, Unfortunately I am not in the Ohio area. I live in western North Carolina. I have called Dr Grubb's office up to 4 times a day for the past month but I think he may have finally called my GP friday. Not sure but I will find out tomorrow. Yeah, Dr's sometimes seem to forget who pays their bills If it weren't for us, they would be making it paycheck to paycheck. Thanks for your help!!

JLB, Forgot one thing, I was also misdiagnosed with many different dx including anxiety for many years. Don't settle for that dx until they have done every test imaginable to rule everything else out!!! Danelle

Hi, welcome! I too have LOTS of problems with arrythmias and tachycardia after eating, even just the smallest of thing like a half a sandwich, or a salad, etc. The food also makes me extremely "full" or bloated for hours. I get dizziness with the irregular beats and/or tachy, and I also get short of breath. Unfortunately what I have done is resorted to eating soft foods(mashed pot, mac and cheese, etc) but even those foods bother me. Lots of times I will drink a slimfast or protein drink instead because I know if I eat what is going to happen That's bad when you can't even eat without symptoms. Good Grieeeeeeef!! I understand where you are coming from completely. I have lost quite a bit of weight lately(I am at 116 now) but I can't help it. Sometimes I do "force" myself to eat something solid(in little portions) cause I know I need to but then the irreg beats and/or tachycardia always set in. I also have the very irregular beats many many times a day. I have had them for years sometimes worse than others-lately on the worse end. And each and every time they freak me out. I always either get into a full blown panic(if they are bad enough and I can't breathe or if they are coming every other beat etc) or I get instant anxiety at some level-all depending on the severity of my symptoms, where I am and what I am doing, who I am with, etc. It's like being a true prisoner to your own body. Don't know how to break the cycle(I have been in this cycle for 19 yrs-I am 37) But like I said, different stages at different times. Didn't mean to rattle on, just wanted to let you know you aren't alone. I know that helps me out when I feel "different" or not sure if something I am feeling is a POTS thing or not. Please keep us up to date on what is going on with you and your Dr's appts. Can't really give any suggestions there other than make sure you write everything down you are feeling and want to ask AND be assertive enough to make sure that all of it is gone over with you before you leave the Dr's office. BTW-my meds are atenolol(for my HR) and clonazepam(for my anxiety)which works when it wants too!! Good luck, hope to hear more from you soon! Danelle

Thanks so much for the info!! I really appreciate you taking the time to answer my questions. I am SO very happy for you. I know what a worry it is when your income disappears. I never knew a "not so known" health condition could disable a person so much. My new motto is "One day at a time" sometimes "One hour at a time" I'm hoping that some day this will be widely recognized for the creature it is and many more people will be educated about POTS. You are an inspiration to the rest of us. I will read your responses when I get down. And no matter what, I will NOT give up either-unless I have a miracle cure! Thanks for being a "spokesperson" in the disability field for us POTS folks!! God Bless and Congratulations. Now maybe you can relax a little bit and get some piece of mind with this whole thing. Danelle I will keep you updated on my "case"

Congratulations!!! I know you are ecstatic! I am in the process of waiting to hear something myself. I just filed last monday so I know it will be a good while. if you don't mind I 'd like to ask u a few questions: 1. where u denied the first time? 2. Did you have to get an attorney? 3. What state are you in? 4. Was POTS your only Dx? 5. Did you send in your drs reports or did the drs? 6. what all did they say(the reports) Sorry for all the questions!! Thanks for your help, I am just inthe dark with this whole thing and am wondering if there is anything else I can do to help myself other than pray, pray, pray!!! I am so happy for you Congratulations again!! Chalk one up for us POTS folks!!

I saw Dr Grubb at the end of April. I wrote about my visit shortly after returning home(if any of you want to look back). I am in the middle of filing for disability and am in desperate need for medical attention. My POTS has gotten worse, which I think I have mentioned as well?!("fog") Anyway, my cardiologist and my new GP Dr's have tried numerous times themselves to get Dr Grubb on the phone or to get him to return their calls. This has been going on for right at a month now. My new GP will not see me until he speaks with Dr Grubb personally so they cancelled my appt and can't see me again until the end of Aug. My cardio has his hands tied, he has tried everything that Grubb mentioned in his short dictation and nothing is working. I do not want to switch GP's again because this GP actually knows a little about POTS but he wants to talk with Dr Grubb first(which is understandable) I have called Dr Grubb's office more times than I can count. SOmetimes I get a nice nurse who will say she will be sure he gets the message and that she is sorry. Other times I get a smart *** that says "well, did you try reaching him in Tahiti?? Or It is theOTHER dr's fault because he demands Dr Grubb see you (or others) and Dr Grubb won't say no" or " you know Dr Grubb isn't good at return calls" DUHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH I feel like if he can't take care of the pts that he has and has seen then he doesn't need to see anymore. If he has got so much on his plate(and I know he does) he needs to take care of the pts he has and say NO to others or get some qualified help. I wouldn't make such a fuss but I am very desperate for treatment. I have lost over 10 pds in the past month or so and it still keeps coming off. Trips to the ER for tachy, literally inability to function, etc etc etc and NOONE seems to care. I express this info to every dr that I call each time I call and "Oh well". Sorry, I needed to vent badly. WOuld actually write more but it hurts my hands and shoulders. Has anyone else had these problems? I sure wish we could find a MD who cares. I think my new GP will be really good if Grubb will just make one 5 minute phone call. Apparantly I'm not worth it... I would think twice if I were going to see him for the first time, look elsewhere if you want more than just a one time visit and then he sends you on your merry way not thinking twice about you again. Thanks for listening

Thanks for all the great advice and replies, I will give them all a try. I'm sure my husband will be happy I did Wishing you all a great sexlife, Danelle