Poohbear

You had a BAD day!!! Hope you feel better soon.

I live alone and I can tell you that it can be tough. I don't have any family support. The only thing that has "saved" me is a handful of people from my church. There are some individuals that "act" as my family..they take me to Dr appts, help me get groceries. If I'm really really sick sometimes I can ask one of them to stay with me for a night or two. They will make meals if I need them to etc. I utilized a home service agency for a while. They were not nursing care but would come in and help me prepare meals, take me to the store, do laundry and light housekeeping. It was expensive though $15.00 an hr plus mileage if they drove you anywhere and they had a 4 hr minimum charge per each day of service. Being on disability pay I couldn't afford much. A social worker advised me to go to assisted living however I can't afford it. If I were to get worse I would have to go to a nursing home which I can't bear the thought of at the age of 37!!

The decision to quit working is of course a personal one but I would recommend you use your FMLA and any benefits your employer offers. If you quit, you may not be eligible for or have a harder time getting any long term disability benefits your employer may offer. Also, FMLA protects you in that if you were to get better at least you'd still have a job to go back to. Another thing, in case you don't know about it, look into JAN (job accomdation network)--they are helpful in assisting you with possible job accomodations that may allow you to work and employers usually work well with them. This may not be an option for you but I wanted you to be aware of it in case it is. As for filing online. I didn't like it because it limits you in how much you can type in each space. I filled out the forms myself and mailed it to my local office certified mail, return receipt Hang in there! Sorry you are going through this

I know you all aren't Dr's but will you give me your objective opinion? Am I making a mountain out of a molehill and simply don't have good coping skills or am I "right" and all these Dr's just ignorant and lazy? My cardio still has not called me back (see previous posts by me if you need more info). I do have someone calling their office this morning on my behalf. I think my cardio's response is going to be "I'm sorry you are passing out more but there's nothing more I can do for you" He has said that to me before in the past but I believe he is wrong. He could at least fight for me to get outpatient iv infusions or home health or something. I think in the cardiac world my condition is viewed as minor and not serious. I have extreme tachycardia with a normal rhythm = unpleasant but not serious in their eyes. I went to an internal med. Dr yesturday. He acknowledged how crazy it was that my heart rate and bp were so erratic but seemed to understand it was autonomic dysfunction and knows he knows too little about it and thus expects my "specialists" to treat this. When I questioned if his office would be willing to coordinate my care and help me he said I had too many specialists to coordinate. Right now I have 6 or 7. I told him the reason I had so many specialists was because the former Dr I saw in his practice said she wasn't comfortable treating this condition and told me to stick with my specialists for care. Then after hearing all my more recent GI issues referred me out to yet another specialist. So while he was somewhat critical of the # of specialists I have he also seemed to understand it's inevitable when dealing with autonomic issues and referred me out to another specialist Bottom line....I'm not much better. Still throwing up every day, passing out on a regular basis, blacking out even when I sit up etc. and yet I feel like they are all brushing me off. That makes me wonder.....am I expecting too much? Am I supposed to adjust to feeling this crappy and not being able to be up moving around and prepare myself for the next lecture which will be if I lay around I will make my orthostatic intolerance worse? (which is it??? Do they want me to try to avoid syncope or not????)

Sweet Stacey I am sooooo sorry you are going through this. I am on my way out the door for a dr appt so I don't have time to say much in the moment but wanted to let you know I'm thinking of you and hope you feel better soon. You aren't alone in this sending you a BIG HUG

Julie, I hope you get to feeling better soon!!! When I got a virus in December it took me several months to recover from it so I think it's common for us to respond so harshly from common ailments. Hang on for your appt's this next month. Hopefully you will get some answers. I wish I had more to offer; I can tell you I understand how bad the fatigue and all that comes with this disorder can be but I no that's not a big help to you except to let you know you aren't alone. Wishing you better days soon!!

Hi Sunfish!!! I just now logged on and see your post. You are such a trooper and an inspiration to me and many others here. Please don't worry about keeping up with all the posts. I know you want to return emails and such but you need your energy to focus on YOU. Everyone is right.....we don't expect you to respond and return all these posts and emails Hang in there and hopefully you will have your own bed again Wednesday night!

I've had symptoms like this in the past but in my case it was related to my IBS. Maybe you could try eating bland foods for the next 3-4 days (rice, toast, broth, gatorade etc) to try to give your system a break from working hard to digest foods. Stay away from carbonated drinks or caffeine. Fried or greasy foods should be avoided. Veggies are also tough on the digestive system so don't eat too many for a few days. WHen you try to add back foods, go slowly and see if that makes a difference for you. I agree the crawling on all fours does help. I've sometimes just been on all fours and rocked back and forth (because I felt to weak to actually crawl around). I'm sorry you are dealing with this and hope you feel better soon

Thanks for the support guys!! I'm so thankful I have this site to turn to for support because it's too frustrating to deal with alone I live in a large metropolitan area so there are no "small" hospitals. The ER closest to me has been more helpful in the past but the problem I run into there is if I get admitted the cardiologists who are called in don't know what to do for me and don't feel comfortable with my case yet, they don't want to let MY Dr advise them because they don't want to admit they don't know. It's very political around here because the hospitals are angry/fighting/competing especially for cardiac patients. You would think this would make them all better but so far it hasn't worked that way. I'm afraid if I go to another ER I will be exused of "dr. hopping" (not to mention I DREAD them trying to find another vein to get access from for either blood work or an IV because they blew two yesturday and I don't have any good veins left). I'm considering writing a letter to the management of the ER I went to yesturday and maybe I will include the fact that if they are wanting to compete to show they have better cardiologists (which they DO in the outpatient setting) then they need to do some educating with the ER. Meanwhile, I've passed out once today already. I called my cardio's office to tell them what happened and I was told someone would call me back "sometime today but it could even be this evening". Thanks for reading and letting me vent!!! PS....Why do Dr's, even when they admit they don't know anything your disorder, get so threatened by the fact that we have done the research, (in my case have been to both Mayo and Vandy so I have confirmed diagnosis and an outlined treatment approach) but yet they brush you off because THEY don't understand and are too lazy to look this stuff up themselves?

After passing out more frequently and feeling yucky overall, I called the on-call cardiologist and he told me to come in to the ER. So, I got up and tried to get dressed (passed out yet again) and then my tachy was so bad I couldn't stand up without blacking out so I called 911. The ER gave me a bag of fluid but then sent me home. They said as long as I was getting enough liquids in me to keep my electrolytes within normal limits then that was ok (they didn't care that I was puking up my guts. They NEVER checked orthostatic bp or hr. They told me they needed a urine specimen but I was never able to go so they didn't run labs on that. Hello???? Shouldn't that be a sign to them that I was dehydrated? On top of that, I would have periodic episodes while lying flat or trying to slightly recline where my heart rate would spike in the 150's-160 and occasional spikes above 180. They sent me home the same way I came in. I had to ask for something different to try for nausea (I would have thought that would have been a given since I was talking about having nausea and vomiting). The Discharge sheet they gave me said to go to the ER if, "you pass out while sitting or lying down" if you have multiple episodes of syncope. Well, they sent me home with the very same things they tell you to go in for!!!!!! I am so tired of being treated so poorly!!!! Will the medical community ever educate themselves?? I kept trying to explain to the Dr and the nurse and they both acted to busy to care.

Morgan, I did have a family Doc but I got a letter two weeks ago saying she had left the practice (they only gave me a 3 day notice) so I've not had a chance to find one. I could call the office (I think they have two other Dr's in that office) and see if one of them would take my case but I'm certain they would tell me to go to the ER. I have been trying for over 2 yrs to get a family Dr. They don't want to take my case because they don't understand Dysautonomia, they say they don't have time to research it and learn about it and tell me to find someone else. I finally found someone this past fall (who suddenly and abruptly left the practice); she was fresh out of med school but even she wouldn't do anything for me stating "I'm afraid I will make you worse so just stick to your specialists" The other problem is that the family Dr I had is out of one hospital and my cardio is out of another (competing hospitals and it gets competitive and political). So if I go to the one hospital I have no cardio Dr and they don't know what to do with me. If I go to the hospital my cardio is out of then they may address my bp and hr issues but I still have no GI dr. I guess my thought would be maybe the cardio would admit me and request a GI dr to see me???? I do live alone but I'm used to passing out and being alone (as "used" to it as you can get)

As you may recall from a previous post the past few weeks my GI issues have gotten worse to the point I can't ignore them. My cardio said he would try to find a GI Dr. for me to help "pave the way" and see if anyone was willing to take my case. From doing some research and talking to a few people I've learned that I need to find a motility specialist but I'm also being told it's hard to find a good one. I basically put myself on the step 3 gastroparesis diet (which is broth, saltines, pudding, rice, small amount of chicken, egg, toast--stuff like that). It has helped but the nausea is still bad, especially at night. The med I had for nausea isn't working well and seems to be dropping my bp. I've passed out several times the past few days and passed out twice this morning. I think my body is not getting enough sodium or potassium between reducing my diet and throwing up. I have no GI Dr. and I have no "family" dr to call. I can call my cardio on monday and try to push him to hurry to find a GI dr but I'm getting weak really fast & don't know if I can wait until Monday. I'm afraid if I go to the ER they will just send me home and I really feel like I need to be admitted and have them run the tests on me and monitor me while we try to find some meds to get my symptoms under control. I hate ER's though. Anybody have any experience or advice in this area?

I have many personal comments on this issue but not enough strength to sit up and write about them all in the moment Carmen summed it up well for me but I wanted to add that I am much more aware of the fact that all illness, disease and syndromes were at some time "new" and "nobody knew anything about them". So, I am thankful for the pioneers (patients, researchers and Dr's) in any and all disorders because I can relate to the frustrations, fear and sometimes lonliness that come with a "new" disorder that is yet understood by either the medical profession or society as a whole.

Welcome to the site! I'm sorry you are having to deal with this but I hope you are able to get the support you need here and be sure to check out the following links for additional info that will help you get around this site and seek the info you're looking for. http://dinet.ipbhost.com/index.php?showtopic=4389 http://dinet.ipbhost.com/index.php?showtopic=1954 http://dinet.ipbhost.com/index.php?showtopic=3499 http://www.dinet.org/

I too have trouble sleeping especially in the hours between 3am-6am. I've also had many nights where I am so exhausted, in so much pain or tachy or whatever and know I need the sleep but can't get it because I can't get comfortable and then I get frustrated and sometimes will cry. I think sometimes we may get more frustrated in the middle of the night (not to mention we are sleep deprived) ....it's lonely and sometimes scary to feel so rotten and everything tends to get magnified at night. One thing I've noticed is that when I go to bed later (12:00-1:00am) I tend to sleep a bit better. I still don't wake up feeling refreshed (or if I do it doesn't last long) but I don't tend to get the horrible tachy that wakes me up. I would NOT be able to manage this way if I had to work or get up early in the mornings and it's kinda by accident that I discovered this helps me. I started out trying to be in bed by 9-10pm and sleep like a normal person and I had more problems with tachy in the middle of the night.

I'm sending healing thoughts your way and hope you will be feeling much better soon. I hope you are able to get some decent help while you are there!! Hang in there

It is probably a good idea to go ahead and start on the med your Dr. gave you since your TTT is over. It would still be one of the first meds of choice most Dr's try regardless of if your BP dropped or not. The med will help with your tachy if you can adjust to any side effects. As for the TTT it sounds like they did not do it right. You are supposed to lie flat, still and quiet for 30 minutes prior to being tilted up.

I believe if you are employed then because of the way things are set up you would have to file your LTD claim first or at least congruently with SSDI if you wanted to receive benefits. And yes, the two do have different criteria. Generally, your employers plan is easier to get on initially if you have good documentation in your medical records and is much easier to qualify for. However, it is much more difficult to remain on your employers plan after a year or two than on SSDI. Most LTD plans require you file for SSDI as well (that limits the amount they will have to pay you if you qualify for SSDI)

I don't think the treatment for the symptoms of the POTS would change however, if they can treat the underlying autoimmune disorder you have you may become much more functional and less symptomatic. Have you done any research into IVIG therapy? You may want to look at this old link http://dinet.ipbhost.com/index.php?showtopic=3735&hl=plasma

Thanks for your replies!

I was diagnosed with IBS years ago. Now I'm having other problems. Trouble swallowing and food getting stuck in my throat. Liquids go down fine but solids (even ramen noodles got hung up in my throat) keep getting stuck. Liquids don't wash the food down, I have to eat something kinda rough with texture. Over the past several months I've had increasing problems with nausea. Anyhow, I'm trying to understand the differnces between IBS & Gastroparesis in terms of symptoms. It sounds like maybe the only way to know is by the gastric emptying test. I get bad bloating when I eat, even when I eat small meals. I'll be calling around tomorrow to find a gastro. Dr but I wanted to see what experience you guys have had with these issues.

Glad to hear you are home and feeling "lighter headed"

Don't bring up the surgery issue with Mayo while trying to obtain your appt. They do not like to be involved in court cases and do not like their Dr's being called as expert witnesses. If they think up front there is this potential you may have more trouble getting seen. Keep the info until you get to the specialists that need to evaluate you. I had my Dr. write Mayo clinic stating that they felt I had an autonomic disorder but they didn't have the equipment to thoroughly test me and thus, were requesting a referral to an autonomic specialist who could complete these test for me. I think I did wait 2-3 month but they assigned me to the right dept to begin with.

Mayo can be a helpful place. You will have a better chance of getting better care if you are able to get your primary appt with one of the specialists in the autonomic field (Dr. Low, Dr. Fealy, Dr. Benarroch, Dr. Sandroni). When you make your request for an appt just state that you need to be seen by autonomic neurology specialist. I don't know what type of wait time they currently have but it would be worth waiting for the right Dr. In terms of what to expect from them they are good at diagnostic and ruling other disorders out. Do not expect a miracle cure but go with the aim of finding something that will make daily living easier and more managable. Also, do not expect any follow up care once you leave the Mayo Clinic; you need to have local Dr.'s that are willing to follow through with Mayo's recommendations and who will research and learn on their own as well. Good luck! Keep us posted

I don't understand it either. I may be wrong about this but I think Wellbutrin is the same as one of the medications they use for folks who are trying to stop smoking. It helps them wean off the nicotine.