Poohbear

I've had the opposite problem of retention both urinary and constipation. My neurologist and I agree it's the NCS causing it. I've had to self catheterize but in my reading up of that they recommend the same thing for incontinence problems. As someone else already mentioned in this post..it would keep the bladder empty on a regular basis and thus, less likely to have any leaks or flushing. I don't know if there is anything for the fecal incontinence though. The self catheterization may be a "good" option for your husband if the meds don't work. Personally, I prefer the self cath to the meds simply because my body reacts so horribly to any meds; this way I don't have to deal with meds and side effects etc. Hope you get some answers that will resolve this dilema soon!

Welcome to the site! I hope you will learn some things of help to you here as well as get support! I too have a pacemaker; for me it does prevent me from passing out when my heart drops too low (I had episodes where literally in slightly over a second and a half my heart rate would go from 130's to 17). This is a very frustrating disorder as you have already discovered! In terms of your job, I can relate to that experience as well. I had to stop working about a year ago and it's been a very hard adjustment for me. I miss my job very much even to this day!! My best advice, since you don't know what is going to happen is to read your employers policy. Do you have access to Long term disability beneifts? If so, when would they kick in? I would also advise that if you do have to go on Long term disability go ahead and also start the paperwork for social security disability. What type of work do you do? Another resource that was helpful to me before I had to stop working was a place called JAN (Job Accommodation Network). http://janweb.icdi.wvu.edu/ They were very helpful and with their advice and assistance, I wrote a letter to my employer requesting an accomodation and showed how the accomodation would benefit both of us. I do hope you start feeling better soon! Keep us posted.

Jan, I hope you and Jeff both have a better day today! Sometimes it's difficult to know when to push ourselves and when to let our bodies rest; I hope if you decide to go to church that you get some support. I don't think there is anything wrong with saying, "I don't really feel like being here, I need rest and yet, I'm here and I need your support". Can you ask someone from church to do the shopping for you if your daughter is unable? A lot of times people want to help, they just don't know what to do but if you give them a specific task (like, here is my list I need someone to shop for me) they are happy to do it and feel like that's a way they can contribute to supporting you. I hope you can get some rest and relaxation today. I continue to pray for you and Jeff and I pray that God will give you the strength to get through each day.. Hugs & I hope today is a better day!

Hi Julie! I had been thinking about you and wondering how you were. I wish I had some great words of advice but I don't. We do care about you and wish the best for you!!!! In terms of calling Dr. Davis I think you should call him and be honest...tell him you feel like you need some support in dealing with the chronic and worsening medical condition you have and yet you are also so exhausted that you wonder if you can really "work" on any issues. The person I work with is EXTREMELY understanding and supportive of this type of thing. Some weeks all I can talk to her about is how frustrated I am with Dr's or how I'm upset that I can't do more and other weeks I'm able to do more "Work" and not just vent. She is patients, reminds me that what I'm feeling and going through are normal for anyone dealing with chronic illness etc etc. My personal experience is that having so many Dr's belittle you and not listen seems to strengthen our own "critical" voice inside. One thing I learned about myself is that, at this point, I will sometimes say horrible things about myself to myself (such as, "you're worthless" or "everyone would be better off if I wasn't here anyway because I'm just a burden" or "you should just get over it and do whatever someone is asking you"); I know this sounds kinda strange but over time, I learned I was saying these things to myself knowing many people AROUND me were going to say these things and so in some weird kind of way if I said it to myself first and tried to believe my own voice saying it then it didn't hurt as much coming from somebody outside of me. The problem is it was still very destructive coming from myself. I still battle with this because it's easy for me to hear my own critical voice. I wish I had some good answers. I know how much the exhaustion and fatigue mess you up as well and how weary it can get dealing with this stuff every day. As Nina said, the roller coaster will have an up side at some point. Try to hang on and meanwhile, there is nothing wrong with occupying yourself with a good book (or whatever you choose) to "escape". Sometimes that's what gets us through these times.

I too had this reaction with the redi tabs. You may want to take the other "traditional" form of claritin (that isn't the redi tabs) because from what my Dr told me the redi tabs enter your bloodstream almost immediately whereas the "traditional" pills don't act so fast. It would take a little longer for the drug to work but it might also allow your body a slower adjustment to the med and therefor wouldn't produce the pots symptoms. This worked for me but of course, we are all different. Hope you feel better soon.

I too often have chest pain. I don't really have any good advice but just wanted to offer some support and say that I hope you feel better soon. Sometimes I feel like my chest muscles are in a deep spasm and it causes a lot of pain. Maybe you could experiment...sometimes ice helps and sometimes heat helps. Also, very gentle stretching exercises sometimes help too. Also, increasing your potassium probably wouldn't hurt either just in case that is part of the problem...just eat a baked sweet potato or banana or some other food high in broccoli. Hope you feel better soon!

Thinking of you and Jeff. Please do take care of yourself; get whatever testing you need done when you can. It may bring you some peace of mind to get things checked out and get answers for yourself. I'm glad you are going to move forward with the puzzles also; you may find it's something to take your mind off things a little here and there.

I'm glad to hear things are better than they were earlier in the week and I will hope and pray Alex recovers quickly and fully. Please try not to worry about the catching up....you and your family are what's most important. Bills and paperwork can be extended and you'll find most people are accommodating on matters like that as long as you notify them up front there is a problem. Do you belong to a church or some other group that could assist you with meals or house cleaning for a few weeks? Hang in there and try to get some rest!!!

Autoimmune deficiency is not the same as an autonomic dysfunction. Are you certain you have an autoimmune disorder? I ask this because somehow, surprisingly enough I have horrible autonomic dysfunction and I do have Hashimotos thyroid( which is autoimmune but all by itself is not considered autoimmune disease) but my immune system is great. I have no trouble with taking melatonin although it doesn't seem to do anything for me. You may want to call your Dr and double check if it is okay for you to take it.

Just because SSDI approves your case does NOT mean your employers LTD plan will. It's a very different ball game. I'm not clear on your situation.....has your LTD denied your claim? If so, what was their reason? Knowing that would help in determining if spending money for an attorney is worth it or not.

Corina, I'm sorry you felt hurt by this Dr. From what you write, I do think I understand where the Dr. is coming from. You know you have Dysautonomia, you know your children may also have it (although it's also true that many people have dysautonomia that has no genetic link and thus, their children would not have it) but unless the kids start having symptoms that interfere with their daily lives I agree it's unwise to "put a label on a child". Especially in our world today, sometimes, putting a "label" on a child can actually do more harm than good...it can make it impossible for them to get good health insurance as they get older, they can't get life insurance when they need it (or will have to pay excessive rates for it) etc. It is also true that because you do have dysautonomia you know the signs & symptoms and you can advocate for your children much better when you need to. Also keep in mind though that the symptoms you describe in her, are symptoms of many things and may or may not be related to each other. I think most Dr's are more open to keeping in mind the medical history of a childs parents and considering they may have the same condition than if you didn't have the condition and your child did (then they might not ever consider dysautonomia at all or shrug it off a lot easier). I hope I'm making sense here. I know what I mean....just having trouble putting it into words. I have dysautonomia that has disabled me. I have a sister who fainted frequently as a child; she is 9 years younger than me and when I got the diagnosis of Dysautonomia I told her about it. It appears she does have some autonomic dysfunction however she is rarely symptomatic at all anymore. So, even if there is a genetic tendancy it doesn't mean your child will be as limited by it as you are...they may, but they may not be. Having said all of that, I am sorry you had this experience with the Dr. Maybe you could try to give him the benefit of the doubt since you seem to like him otherwise and just see what happens in the future.

Christine, Check this out http://www.dinet.org/what_helps.htm This is also from the same link shown above......Increasing salt can help POTS patients to feel better. Normal subjects reduce urinary sodium excretion on assumption of upright posture, but patients with orthostatic intolerance do so ineffectively (Vanderbilt University Autonomic Dysfunction Center, 1999). Impaired renal sodium conservation can contribute to hypovolemia (Streeten, 1999). Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension. Salt helps to expand blood volume. Some patients find salt tablets and/or electrolyte solutions to be helpful. Physicians suggest patients take 10-15 grams of salt daily (Low, 2000). Salt is 39% sodium, therefore 15 grams of salt equals 5,850 mg of sodium. You need to check with your Dr though. Sometimes I do well to add extra salt in my diet and sometimes I start having a blood pressure that is too high and have to cut back on the salt even if it is helping me retain the fluid.

Welcome to the site! Glad you got a diagnosis and I certainly hope you will feel better soon with these new things to try. You can do some searches on topis on this site as well and find lots of good info. My best advice for you at this point would be to try the new things the Dr suggested and keep a log of your symptoms and see if you can find correlations between things or things that exaccerbate your condition. (for example many people feel worse in heat, with hormone changes, certain foods etc). Again, Welcome!

Jan, I know times are terrible beyond words for you. Try not to feel guilty about Jeff getting the car; he understands and remember....it's most likely helpful for him (at least on an emotional and mental level) to continue to do the things he would have done a few weeks ago without thought...getting the car for you being one of those things. I believe you have to try to hold on to all the hope you can. I hope his labs don't come back any worse tomorrow. I'm sure mowing the grass was tiring for him but with the heat and the extra stress and worry he has right now that's enough to add to his being tired. Good luck tomorrow and post when you feel up to it.

Mindy, Hi! Hang in there! I'm glad you have been able to get your computer and log back on. Sounds like you are going through more than your fair share of problems!! I understand what you are saying when you talk about the Social Security Disability stuff...it is a nightmare going through it. I have been unable to work for 14 months now and I miss it so bad BUT then there are many days where even though I miss it I know I couldn't do it. Hope you start feeling better soon!

Hi! I just wanted to let you know you and Jeff remain in my thoughts and prayers. How are you holding up? How did your appt yesturday (Monday) go?

I found this on the internet. Hope it helps! Petechiae's most common cause (in a person with a connective tissue disease) is low-platelets. Other possible causes include: allergic reactions, certain infections, some neoplastic conditions, and certain anemias. A CBC (complete blood count), which is a common *routine* test, will show the platelet count. ...this particular person had written in who has lupus. Sounds like there are a variety of causes though. Even though you have been on aspirin, this could be a complication developed over time from that or it could be something totally different. I agree with Ernie...you probably have to get this checked by a Dr. but it doesn't mean it's anything serious; although it could be which is why you need to have it checked.

Sounds like you have a lot of the same symptoms as many of us on this board. I am truly sorry for that but I hope you can get some answers from Dr's and some support and information from this site! I think I understand what you are talking about now...not necessarily that you completely STOP breathing but it sounds like you are describing very shallow breathing. I too have this sometimes; mostly when sleeping. My advice would be to talk to your Dr and explain that you understand this may not meet the "typical" criteria for a sleep disorder or breathing condition but see if they could try you out on oxygen when you have these episodes to see if it will help. For me, this type of symptom gets much worse if I am really tired or fatigued (beyond my already "bad" baseline). Try to explain to the Dr that with Dysautonomia our bodies are sometimes extremely sensitive to changes and you want to see if oxygen or CPAP machine might help you feel better and improve your quality of life.

Just wanted to let you know that Atenolol can make the breathing problems worse. I had to come off atenolol and I still have some breathing trouble but it is much better than it used to be.

UGGGHH! I know how miserable these experiences can be!!!! Are you okay in terms of no broken bones, concussion etc.? I had to laugh at your comment about turning up the saline. I've been in the ER at times when they started it too fast (for me my body adjusts much better with a slow drip) and when they weren't looking I would slow it down if they didn't listen to my request! You are right....they will charge you for the whole bag anyway. Hope you are "okay" and feel much better soon!

If anyone is interested it appears this is a fairly new article http://www.clinicalcardiology.org/briefs/0...20ablation'

Check this out http://www.umm.edu/endocrin/pitgland.htm

First off, Welcome to the board! I'm sorry you are going through such a miserable time. What do you mean when you say "going in and out of consciousness and not breathing even when I'm lying flat"? The in and out of consciousness I understand but the "not breathing" I don't. How do you know you stop breathing? Are you gasping for air, short of breath or something else? With what you are describing so far I'm wondering if you have been tested for sleep disorders...narcolepsy or apnea which could interfere with breathing. What other symptoms do you have that led the Dr to diagnose you with POTS? Hope you'll be feeling better soon!

Yes, I too had tears brought to my eyes while reading your story. I am so VERY happy for you and excited for you! Congratulations on this HUGE SUCCESS!!!!

I am so happy you are improving some! It's late so I hope I can keep all my thoughts together on this.... 1-Contact JAN (Job Accomodation Network) and ask them these questions just to have information 2- I don't know that you have to tell your employer (unless you need accomodations) but there are some "sticky" issues. First off, on a resume or at interview you need to have an explanation about any lapse in employment. Second, if you want/need your job protected under ADA act then they have to know (but as many of us know, even though we are supposed to be in a non-discriminatory world, we are not, so if you tell them you have a medical condition they may not hire OR they may hire trying to meet their "stats"). Third, if you choose NOT to tell them you have a medical condition, and your condition declines and you become unable to work or need accomodations, you don't have the same security in being covered under ADA because you didn't notify your employer prior to taking the job. So there is a bit of a catch 22 here. 3-Also know that MOST (if not all) employers Long term disability carriers have a clause in the policy language that states if you have EVER been disabled with a particular condition and you become disabled again with the same condition your current LTD carrier is exempt from covering that disability. This is important to know because even though your employer may have LTD coverage, if you become ill with the same condition you may not receive any benefits from them. This is sometimes not the case if you are paying all the premium for the LT coverage. Just read the fine print and ask questions!! Hope this helps and I wish you the best of luck! Please keep us updated and let us know what you learn