danelle

Just wanted to say hi to everyone. Haven't been on much lately. SOmetimes I will glance at the site or write just a little(especially about my son) but can't stay on long enough to read the posts. Hope all is doing well. I do notice alot of newbies which is WONDERFUL!! I try and respond to a few posts when I can. I feel guilty for not being on and helping people out more often because you all have been a lifeline for me, you have been a huge part of what has kept me going, and I feel like you are truly family. I miss talking to all of you. Hope to be able to be more active on the site soon. Just wnated to let you know that I think about you all often and love you guys Hugs, Danelle

Ditto to Merrill's advice about the meds and alternative tx.!!!

Susie, First of all I see you are a newbie, WELCOME!!! Secondly, I had to quit my job as a RN last June due to POTS, etc-98% from the POTS. I fought it as long as I could but eventually it got the best of me. I am trying to get my SSDI-which is a joke but that is another story. Here is a little of my hx in a nutshell. I have had sx of POTS since I was 18(some since I was a child but they really came out at 18). I think my first pregnancy really brought it out but ultimately I was born with it. From that time on, I haven't been "normal". Much tachy, etc. I took on odd jobs from time to time. Going to many drs trying to find out what was wrong, even a few hospital stays but because I was ayoung woman-it was all in my head. Anyway, I just learned to deal with the symptoms but limited myself to things I could and couldn't do. OVer time, things got worse. With my second pregnancy at age 21, I had multiple problems with my POTS -but once again didn't know that was what it was. When I went to nursing school things got worse again but I somehow managed to make it through. I tried to work full time as I was orienting as a nurse but was unable to due to the POTS-still unsure what was causing my cardiac sx, etc. I worked part time for 9+yrs then went to PRN due to my increasing sx. They continued to get worse and I declined rapidly. I FINALLY got a dx last year of POTS, along with fibromyalgia, and a few others. Now that I have drug my story on, I HAD to quit last June. When I went to work(I worked in the hospital) I would end up in the ER or get sent home. Finally, I took the advice of allmy coworkers, family, friend, and the signs God sent me(which I asked for) and resigned. It was one of the hardest thngs I have ever done in my life. I stillhave a hard time with it. but that has taken a back burner becaseu my 17 yr old was just dx with POTS on April 7. It devastated me and tore my heart to shreds. Didn't know you could live with a shredded heart!! He is having a very tough time right now but that is another story too. To answer your question-NO I can't work. Would give anything if I could. but first would give anything if my son could be cured. Sorry to babble, welcome aboard, take it easy, pace yourself at work, take care of yourself because noone else will, and be good to yourself, don't be too hard on yourself if you can't do something-just advice from someone who has already been throough it and I am still working through these issues. Hugs, Danelle

WOW, that is fantastic!! You should really be proud of yourself, not only for your accomplishment but for getting through it with all that is going on right now. It's nice to hear great news like this, it gives the rest of us something to look up to and encouragement, and it also lifts our spirits. Thanks for sharing with us and go celebrate!!! Danelle

MM, sorry to hear that u r still having trouble. DOn't want you to join us in the "hole", maybe you can start to set some limits for yourself(easier said than done-I know) but you are such an active person-it all may just be catching up with you. You are very admired here for all you can do but at the same time, we would admire you just the same if you were able to let some things go or just modify(maybe that is a better word). I only wish I had half of the determination that you have. Good luck and let us know how things are going. Just reading your list made me tired Hugs, Danelle

JLB, yes, I do have the same problems when my arrythmias are bad. Sometimes even when they aren't so bad. I know some of it has to do with the cardiac output itself, but I am thinking that part of it has to do with the panic too(speaking for myself). It just all wears me out Hope things are better for both of us today. EM, what a great idea!! If I can get past the panic to do the journaling, I'm going to do it!! I love that idea. You can look back and see if there is a pattern or maybe just understand yourself better. Thanks for the tip! I will try it the next time it happens.

Janine, I personally emailed you. THanks for the info. Morgan, thanks for your input, I couldn't agree with you more!!!

Check out my poll on benzos. Janine, an ER RN, had some interesting input in this matter. I am just confused. All I know is what the Dr's have told me but sometimes after so many years, you tend to lose faith in doctors and in their competence in general. Thanks Janine and everyone for your input. It's just a good subject, I think, for discussion.

JLB, please don't apologize. IT is ok. I truly mean that. It is ok I promise. I just scared over the whole thing anyway because I keep going down hill. The irregular heartbeats that are persistent are SOOO scary but I have lived with them for a long time. EVen though I am an RN I can't function enough today to read the entire article and give you what I think it means. As soon as my brain fog lifts, I wll read it and get back to you. It is ok really, thank you for sharing it with us. Any and all info I can get my hand s on I like to educate myself. I just can't do it today, but you cn be sure, as soon as I can concentrate, I will get back to you. You try not to worry too. Hugs, Danelle

Janine, thanks for the input. I personally take klonopin too and have for years. I had been taking 0.5mg TID but recently increased it due to major stressors. IT also keeps me out of the ER but I do find that it doesn't take the anxiety completely away unless I take so much it just knocks me out and I don't like that. I haven't had a visit with my GP since I increased my klonopin but will discuss it with her. My cardio, who knows about POTS, does NOT like klonopin and he wants to eventually take me off of it and put me on buspar-which I am going to refuse, i think at this point. I don't think I couldl make it without my klonopin due to my anxiety and panic. So I am not sure where we are going to go with that. He is the same dr that treats my son. He doesn't want him to have benzos-which was my original suggestion-NOT to put him on benzos but he put him on ativan anyway (for about 2 weeks) then took it away and put him on the buspar-which I took him off of myself last night because of the side effects(I am an RN too ). ANyway, I am glad you told me about the ativan because our cardio prefers it over the clonazepam. Do you have any suggestions on how we can bring this up delicately? I know he has talked to Dr Grubb about us(I saw himonce) and he recommended this therapy for Derrick BUT I also have read many things were he recommends benzos?! What do you think? Also, did you read JB's post about dying from dysautonomia? Have you ever seen a pt die from the arrythmias caused by it? I am scared!!! More than normal!! Thanks for your reply, it's nice to talk to other fellow nurses here-well, it's nice to talk to EVERYONE here, all of us POTSY people!LOL

Morgan, I am so sorry for your experience. I know what you are saying. Ihave had MANY of similar experiences-not only as a pt but as a nurse as well. Doctors only hear what they want, they chart what they want, and they cover their ***. I hate to say it, but it is true. I could just about guarantee that probably 85-95% of all charts and records have some "error" or discrepency in them. I say go for it and stand up for everyone who has this problem-which is basically the entire population of people. On the other hand, I do have to say that there are a select group of doctors who do their charting accurately and thoroughly-I have worked with those folks as well, and right now I have a few dr's that are in that category!!Now that's luck! WIshing you luck and keep us posted on what you get done, Danelle

JLB, I am so sorry you are having a hard time right now. I am having lots of arrythmias right now too. WOW, I didn't know we could die from this!! Where did you read that? Now I am scared too. -Not that I wasn't already terrified in the first place. These irregular and/or fast beats scare the $#^& out of me, even though Ihave had them for many years. SOme times they are worse than others. Hang in there and update us and let us know where you found that info, PLEASE!! Hugs and peace to you, Danelle

Update, Derrick has severe dizziness, nausea, diarrhea, worsening headaches, inability to concentrate since we started these meds-I hope I listed it all??!!. As usual, I am very POTSY today myself-brainfog Please see my poll.

Hi, I am doing this poll because I am trying to find the best treatment for my son. I know what does and doesn't work for me, but I feel that there are a lot of POTS patients on benzos for different reasons. I know this is a controversial area and I am reluctant to let my son take them for many reasons-mainly the addiction properties. BUT at the same time, is it really any different than someone taking meds for their BP, heart, kidneys, diabetes, etc because they HAVE to have it? I just want what is best for him and what will work to give him as close to a normal life as he can have. Just a little history: He does have anxiety and panic attacks, that have increased lately. We have tried buspar which has made him so dizzy that he can't even walk. He is on Zoloft but hte doctor is trying to switch him to celexa. He is having a lot of nausea, diarrhea, and headaches with this switchover. He is also on Toprol XL for high BP and high HR. If you want, you can read my previous post, I will pull it back up and post a note so you can see it with this poll. Thanks for everyone's input!!!

Would u mind sharing it with me? I am a pt of his but have some questions about me and my son and my appt was cancelled when he was sick. Thanks, danelle If u want, u can send it to my email if u don't wanna post it here.

I use the 30-40's that are full pantyhose. They do make a big difference on days, but on some days, I really don't notice a difference. They don't consistenly keep my BP up or lower my HR but I do notice when I take them off I feel my legs fill with blood/fluid and they turn purple shortly thereafter. Anyway, I wear them EVERYDAY. Occasionally I will take them off a few hours before bed if the are bugging me but usually only at bedtime and showertime do they come off. I am glad you are getting results from them too. It sure beat the heck out of IV fluids!

Dawn, your story sounds like mine to a "T". Every part of it. I definately feel exactly the way you do, and husband is tired of all this illness too. Now I have passed it on to my 17 yr old son. We have been married for 21 yrs in June with 19 and 17 yr old sons. Our marriage had been a little rocky from time to time before but since I had to quit my job, lose my income, became helpless, etc it has pretty much went down the tube. We are still together but I think it is only because I have no where to go. Both of my parents have passed as well. I do have two brothers and two sisters but they have their own issues and living with them is not an option. We are struggling beyond words for money, food, etc. and of course it is all my fault. (I am waiting for a hearing for my SSDI which is an 18 month wait) We argue over that one frequently. I could go on and on but you pretty much said my life in your post. I feel worthless, useless, guilty, and a burden. I hate to sound like a hippocrit but please don't give up. Do what you need to do to make your life better, and your health. Don't take any drastic measures without thoroughly thinking it through. If you ever need to talk, feel free to email me. Please let us knwo how you are. Hugs, Danelle

Hi, most of you know that i am a pots pt, and that my 17 yr old son was recently dx as well. I have found a dr in town that is familiar with pots-a cardiologist. he is wonderful and is doing more research and talks to dr grubb frequently about both of us. my son is having a majjorly hard time right now, now only with the pots symptoms but also the anxiety that goes with it. right now, he is on toprol xl, he was on 12.5 but was increased to 12.5 2 times a day just last week. it seems to be helping get his bp and hr down. he is also on ativan prn, but in order for it to work, he has to take 1.5mg. he is concerned about his meds and how he can get rid of the anxiety or impending doom feeling. he has also been on zoloft for 4 years due to moderate to severe depression at 50 mg. anyway, the dr called today and he spoke with dr grubb this am. they want to change his zoloft(which wehave already decreased him to 25mg/d) to celexa. he wants him to continue with the 25mg of zoloft for another week and a half and add celexa 10mg once a day, buspar 5mg 3 x/day-and he wants him to start those today. my concerns are: 1-taking 2 SSRI's at once for a week and a half even though they are both low doses-i thought that was contraindicated but asked the dr and he said it would be ok. 2-the side effects to celexa and buspar are very scary. I just don't know if I wnat him on all this medication. 3-i realize benzodiazepams-ativan, clonapin(which I am on), xanax are very addictive and I am reluctant to let him take them but at the same time, I know the panic and fear-i want to prevent him from feeling this. I do respect this dr and did express my concerns, I want to maintain an excellent relationship with him-he is trying very hard to help us and keeping up with dr grubb. WHAT DO I DO???? If it were me, I don't know if I would take it all(I am EXTREMELY sensitive to meds and allergic to many)-why would I give it to my own son??? luckily he tolerates meds better. SOmeone please give me some advice. ANd to top it off, his prom is tomorrow night/ what if all these meds mess him up?

I am so deep in the POTS hole right now that I feel like I have fallen into an 100 yr old outhouse and it's not pleasant by any means down here if you know what I mean. No chance of getting out because it's too slippery. SOunds rather graphic but that is how I feel. Persephone, DON"T give up. I am often in the place you are in. My kids keep me going-my youngest who is 17 just diagnosed with POTS as well. I can honestly say that I know exactly what you are feeling. If you want, please email me and we can share stories, or atleast update us on here. I am thinking about you as I am sure all the others here are too. The posts on here are a riot, thanks for making me laugh. Hugs, Danelle

Didn't get to read everyone's responses but glanced at them all. I can't drive either. read my post just above this one.

Ernie and Emily, I too am "homeridden", sometimes I go to my sister's but even that is too much stimulation. I cna't handle even going for a ride on some days-which is few and far between. I also have problems with the computer and tv being too much. Hate to hear so many of us have this problem, but glad to hear I'm not alone. Peace and calmness to everyone, Danelle Hey, we could make a cyber mall!!

Miriam, thank you from the bottom of my heart for the donation in Jeremy's name, I will let Roy(his father) know, he will be as touched as I am. Morgan, I agree with you 100%. This world is getting a little too stressful and crazy. I will be so glad when my baby, Derrick, graduates from high school next year. He is still having a hard time with his new diagnosis of POTS-well not really the diagnosis but the symptoms. I am so glad that I am able to be there for him and truly understand when he has spells. People can try but unless they are one of us-lucky POTSY people, they really can't. Glad you both were able to see Dateline, wish I would have posted before the show Good grief!! Hugs, Danelle

Hi all, boy I can't believe how potsy I was yesterday. I was going to send a post asking everyone to watch Dateline last night-Friday 4-22. If you did,the story about Jeremy Bell, the boy molested and murdered by his principal, was my cousin. I hope some of you got to see it. It would blow your mind to know the whole story, Dateline touched on a lot of topics but didn't have time for all of it-obviously. Let me know if you saw it. Hope all is well and doing ok

Miriam, I don't get to respond much anymore because of how I have been feeling but when I read your post, I had to respond. No words can make the pain or sorrow go away but please know that we are thinking about you and sending you prayers and love. I have had both of my parents as well. My mom died when I had just turned 19, the last time I talked with her I hung up on her. It took me yrs to get over that. My father just passed in Sept.2002. It is still too painful to talk about. I can tell you that as time goes by, some days get better than others, you do find ways to go on. I was fortunate enough to be with my dad until the very end(except the last 45 minutes). He waited until we all were out of the room to pass-he told us he would. I am so sorry you had to go through a painful experience the way that you did. It is hard enough to lose someone dear to you but to add the other stressors doesn't help. Please continue to talk with us and do seek out counseling if you can. Life is so short, if at all possible maybe sometime later on you and your family can make ammends but i realize it is too early to go there right now. We can be your family for now. We have somewhat of a similar story. If you ever want to email me personally please do. I will share my story with you if you would like. I do believe that the death of my father-he was very sick for so long-made my POTS send me on a downhill slide and I haven't recovered physically yet. I think that was my turning point of my POTS turning so bad. And as I recall(even though I didn't KNOW I had POTS atht time my mother died-it did the same) Please hang in there, don't blame yourself for ANYTHING, and please don't have any guilt. It is the worst thing for you, take it from someone whtih lots of experience in that area. I hope I am making sense, this is another of many very POTSY days and I have already forgotten everything that I read and wrote Please knwo you aren't alone and we are always here for you. May your mother rest in peace and may you find peace yourself. God Bless You and I am sending many cyber hugs your way. Danelle

Thanks for all the input! Did you have to wean yourself off of one before starting the other or just go to the other pill the next day? I think I will give it a try.