Babettegall

Thanks so much for such a quick response.......... my bracelet has been ordered!

Julia, I wish there was something I could say or do to help you through this difficult time. Maybe what those "professionals" should do during a functional test is to conduct the test and then follow the patient home and do a REAL observation on them over the next 24 hours or so. That should provide them with the TRUE functionality of the individual. Our great ability to hide symptoms or mask them (as much as we try), only end up making it worse on us than if we didn't try in the first place. Having an invisible health issue is at times more difficult than not. We look "normal", so how is it possible that we have so many limitations and problems? I have to get my SSDI application started myself, and dread all the evaluations and what have you I'll go through in the process. I hope you get the SSDI approval you are looking for and find that you were worried about it for nothing. I'll be thinking positively for you! Hugs, Babs

Thanks for the reminder, Michelle. How can I go about getting a bracelet on order?

Dayna, I had an anxiety attack (not a bad one mind you) prior to taking a newly prescribed BB. I was terrified of the affects (talking myself into negative effects of the drug) right after the script was filled. I was certain that my symptoms would get worse than ever as my body tried to figure out what I just put into it. I'm relieved to say that the Toprol XL, 25mg per day is working wonders for me. Granted that I feel more tired than I did before (coming from someone who is dx'd with chronic fatigue syndrome to boot).... but, the overall benefits are enough to keep me taking it daily. I hope that the anxiety will be short lived for you and that you find you're able to have your system adjust quickly and calmly. Hugs,

I'm so sorry you are feeling so poorly and not getting any answers as to what's causing all of it. I hope that one of the docs finds out what's truly going on and get's you feeling better soon!

Light can really make me almost sick to my stomache, and will always set off a terrible headache. I liked the idea of wearing a visor, as sunglasses also make things disoriented for me. Life as a vampire is no way to live, however, the headaches and upset stomache are enough to keep me inside. Sometimes the computer screen gives off too much light and I have to go and change the settings in order to stay online for a while longer. I'm going to have to look into getting that visor and seeing if that helps when I go outside (you know, on those rare occasions when the stars and moon are aligned and my potsy self feels up to the challenge).........

Hugs Lauren, So sorry to hear about the meds failing to improve your symptoms. I've just started taking Toprol, so I can't offer any advice on the midodrine and system tolerances. I hope that you get the dosage corrected and are on your way to feeling a bit better real soon. Could the stress of the move be having some sort of additional trigger on your system as to why you aren't responding as you have previously on the meds? Just trying to see if that might have played a role...... Wish I could offer you more dear, hang in there!

Elizabeth, My thoughts and prayers will be with both you and your son next Tuesday, when he sees the cardiologist. What a terrible problem for anyone, let alone a 7 year old to be dx'd with. I hope that the doctors can find some regimine for your son that improves his symptoms enough to have him return to more "good days" than not. I fully understand your not wanting your son to be used as a pharmasutacal(sp?) guinne pig, I don't like it and I'm 38! You mentioned in your post, that your son also suffers from pain in his legs and feet. That has been a very challenging symptom of mine too. Unfortunately, the only source of relief I've found is to rely heavily on pain medication (vicodin 4 times a day). I can't imagine that they would introduce such a harsh pain management routine for a 7 year old, as they have with me, however, I'd be interested in knowing how your son finds relief for his leg/foot pain. I can only tell you that the pain is somthing you can't imagine being as bad as it is, until you experience it first hand. Let's hope that never happens. Out of curiosity, and maybe I missed it in your post, what are the doctors saying was the trigger for your sons dysautonomia issues? Was it viral or hereditary? Just wondering. Hang in there and let us know how all goes,

Rebecca, Welcome to the group! As many of the others have already stated, you are DEFINITELY not alone in your trials & tribulations as well as your symptoms. The brain fog and other cognitive impairments are some of my biggest issues. And as far as the bowels are concerned.......well, I hear you there too! Do you find yourself waking up in the morning with terrible backaches, only to find that once you run to the bathroom to "relieve" your bowels (like you have a choice in the matter), that the pain begins to subside? I've posted the same question you did with respect to others who also suffer from "near explosions", which are uncontrollable. There were many replies, which always lead me back to discussing it with my doctor. My GP said that it could be caused by pooling in the abdomen, which isn't uncommon in POTS/Dysautonomia pts. The pooling creates unbearable pressure which creates an enormous amount of gas, diaharhea and total discomfort. I've tried all the dietary changes that were suggested, however, none of them helped. I'm going to have to ask him (my GP) to either refer me to a specialist or seek some alternative treatments (not sure what they could be at this point, but....). In short, I'm not ready for the daily use of "depends", however, I can't afford to keep ruining my clothing.....yes, it's gotten THAT bad. Hang in there, and feel free to send a personal message or post your updates as you feel like, we are ALWAYS here for you. If I get any additional info from my next doctors appointment, I'll let you and the rest of the group know!

Hi Friends, It's been a while since I've been online, and have been doing quite a bit of catching up on all the posts/new members. My GP recently put me on Toprol XL 25mg per day for my symptoms. This was after trying B-12 injections without any noticable improvements. I'm finding that the Beta-blocker seems to be making some nice improvements in the way I feel. I'm finding that I don't feel as "disconnected" as I used to feel, and not as dizzy either (thank goodness). I'm curious to know if any of you are also taking this particular Beta-blocker, and found that it will slowly but surely improve the cognitive impairments I've had since being dx'd with POTS? Is the dosage conservative (25mg per day?). Don't get me wrong, although I feel some physical improvements, it's not benefiting me cognitively. My energy level has also been improved, however, when I crash and burn (after doing dishes or a load of laundry - which is far more than I was able to do previously).... I feel it for the next two days (REALLY SYMPTOMATIC, despite the meds). I'm also having a heck of a time regulating my internal thermostat...... anyone else suffer with this? I'm also really curious about those of you who are getting the weekly IV fluids..... What symptoms warranted IV fluids over just increasing your oral intake? Any information you can share is greatly appreciated as I see my GP again in a week, and we are looking for alternative treatments to get my symptoms under control. Thanks for listening!!

A great big THANK YOU for all of you who have posted a response to this particular area in our personal relationships. I was really, really worried that I was the only one who was getting sick after a intimate evening with my husband. I still suprise myself in thinking that somehow I'm the only person who experiences situations or symptoms related to POTS.......... I know, I should know better by now! The kind words shared on this subject have strenghthened me to go ahead and finally confide in my husband of how love making makes me feel during and afterwards. He has been a true blessing in my life, and I'm not sure why I've doubted his not supporting me on this subject. Maybe going forward, we will both be better able to find comfort in knowing that the issues belong to POTS, rather than any lost desire for one another. I can't wait til he gets home from work, so we can talk about this! Thanks again for posting and for all of you who so openly responded

That's a pretty scary sensation you described. Although I've had the same symptoms you had, it was never while driving (thank goodness). I can't say for sure what brings them on for me, but there seems to be some sort of internal gauge I listen too, that tells me whether or not I should attempt to drive on any given day. Does that make sense? I would sure hate to think that I might be putting myself, my loved ones or anyone else in harms way should I get an "attack" like that while driving. The thought of not being able to drive (although it's maybe once every 3-4 days these days) is harsh. I'd hate to lose that independance. Wish there was something more I could tell you......... Just be careful and ask your doctors.

Thanks for posting this question, as it's nice to see that I'm not the only one who struggles in the morning. I'ts been quite a challenge lately, as I've started to grow accustomed to staying up later (as I feel the best late evenings) and end up waking up at the crack of noon! Despite what time I wake up, I'm always so stiff, in great deal of pain and feel lathargic. I find that not pushing myself to get going really helps, and try not to schedule appointments any earlier than 1:00pm, if possible. I miss the good old days of being able to wake up when the alarm rings at 5:30, hit the shower and get myself off to work. Seems as though those days are long gone. I pray that I might have a decent night sleep, and be able to wake up early enough to have a cup of coffee in the mornings with my husband and listen to the birds chirp away........ Unfortunately, I'm still waiting for that prayer to be answered. In due time I suppose. Babs

Whew! Glad you asked the question, as I was really beginning to wonder if it was only my projects or chores that never seem to get started or finished. I can sit and think about everything that I'd like to see get done, but never find the motivation to get up and get started. Maybe that's in part to not wanting to start something I know I won't be able to finish on my own. It's so frustrating. The heat really makes doing anything outside almost impossible. I had my husband put hanging baskets close to the house, so I could at least go out daily and deadhead the flowers (which hasn't happened in a week). In short........ Yeppers, projects or even simple chores takes seemingly 10X longer to complete than before all this potsi-ness. Babs

I can't seem to get enough sleep. For a while, I thought it was me just being lazy. It's nothing to feel the need to sleep for 12 hours a night and then take 2 really good naps (1+ hours) during the day. I suppose I should push to have a sleep study done, to figure out if I have sleep apnea, but the doctor says it's caused by both POTS as well as simple CFS. I'm getting tired just thinking about all the sleep I need.

Hi Everyone, I'm hoping you can help me out here. I'm trying to figure out how to better familiarize myself with the forum/website we have here. The trouble is, I'm not very savvy when it comes to moving around and figuring out how to communicate "correctly" when posting. I've tried sending a couple of PM's, (personal message, right?) to a couple of you, but not sure if I sent them correctly. Then there's the option of emailing....... what would be the difference? Are there times you can PM someone and not others? Is it only when they are "online"? Okay, so now you ALL know, that in addition to being very POTSy........ I'm also technologically challenged. Don't hold it agains me, please! LOL Thanks for listening

Well, another step in the process is complete, right?! Let's keep fingers crossed that in the next couple of months you need to wait, it will have been well worth it! It still amazes me at how much perserverance and tenacity the folks who post in this forum have. It's no small feat to have to deal with the health issues, then to couple it with a long, intensive, stressful arbitration to have to "prove" yourself incapable of working. My hats off to you! Good luck and keep us posted

Nina, There isn't anything that I can say, that hasn't already been said. I hope that things fall into place for you, and you find that the time you spend alone isn't as stressful as it could be. I liked your idea of a webcam to keep both you and T in touch on a daily basis. How can seeing each other daily be anything but great, when you are apart? Let me know how it works out for you, okay? After reading your post, it sure made me realize just how lucky I am to have my teenage daughters at home to help me and keep me company. My husband leaves this Sunday for a business trip to MN for several days, and the "what if's" will really get me down if it weren't for the girls. If you need a shoulder, I'm here! Take care of yourself.......I'll be checking back to see how you're doing

Thank you so much. I'm not sure if this is the right site or not, but I'll be checking it out. Thanks again!!!

Hello Friends, I'm "trying" to get my application for SS benefits filled out and remembered a short while back that some of you referenced a website that had great information on how to complete the application. Unfortunately, I'm not able to remember the site! I remember reading that there are things you want to be sure to include, and words or phrases to avoid when completing the application. Can anyone steer me in the right direction? Much appreciated

Glad you found us! You'll be amazed at how much support is offered and found here, as I know I did! Welcome to the group

Gracie, My gallbladder was removed in 1996. The surgeon warned me about eating foods high in fat or foods containing nuts/peanuts, etc., as they could lead to "dumping" syndrome. Regardless of my diet, I'm still suffering from constant diarrhea. Hello all, I just wanted to say "thank you" to all of you who responded to my post. It really means a lot to me to know that you are all there for me when these issues and questions come up. I'll be seeing my doctor later this morning, so perhaps I can offer up some of the issues you wrote about and potential tests to be run to rule out the celiac disease or other complications which trigger the digestive distress I have. Thanks again!

Jennifer, So sorry to hear that you are having "flush" like symptoms after a virus. I can't say that I can relate to that, however, rather than flush symptoms, I get a nasty bought of "zaps" or surges that run through my entire body.......... either way, they are definitely NOT fun. Hope you're feeling better soon.......... Take care,

You'll have to bear with me as I try to remember what it was I was trying to reply to......... Gosh, this brain fog is running on all cylinders tonight. Lalalisa, I'm so sorry to hear about your having been denied. You must have been anxiously awaiting a response, and then have the bomb drop on you like that. What a mess! Your strength in sharing your experience is helping a lot of us who are facing the ordeal ourselves. I just received a letter from my long term disability company stating that my claim is "pending" until they receive a copy of my application for SSI benefits. Needless to say, I'm going to have to get on that entire process later this week. The thought just sends my stomache into knots. It would be one thing if I felt personally competant to complete the paperwork correctly............... and then to wait for them to deny me........ and then go through appeal after appeal, etc. Isn't getting up in the morning enough????? Well, again I'm sorry for your not getting better news. I'm glad that I read your post, in which the other suffers were able to shed some light on the whole process and additional resources out there and available to us. Keep your chin up! My sincere apologies if my response isn't as coherent as I intended, as I wanted to let you know that I understand where you're coming from as I head there myself real soon! Take care........ Hugs to you!

I've hesitated in posting this, but need some advice.... There seems to be some common disturbances with "guts" associated with POTS. From what I've gathered, the majority run into problems with constipation. Does anyone have the opposite? I ask because I've been suffering with diarrhea (sp?) for almost 8 years now. It's getting to the point where it's more and more difficult to control my bowels. When the urge strikes, I better 'high tail' it to the bathroom, or else! Am I alone here? Anyone else had success with diet changes or medications to control their bowels? Please let me know what you think! I see my pcp tomorrow, and would like to offer up any successes that may have worked among the troupes here, to see if they might work for me too!!! Hugs to all of you