taylortotmom

Hi. What you are describing sounds serious and should be checked out aggressively if it hasn't already. I have had sxs for five years including many T.I.A.'s. With the T.I.A.'s I experienced confusion, disorientation, and huge short term memory loss problems. I still have residual problems. (Sometimes, I forget how to pronounce common words- it is really odd). Anyway, as stated by others the lack of oxygen and low blood pressure are definitely contributing factors. However, you want to be careful and not assume that what your daughter has experienced is just pots sxs gone awry. Sometimes, (thankfully, rarely) it can be TIA's or even fell blown strokes. So be careful and have it checked out. Good luck! Carmen

Doing the same thing myself!! Moved this week from South Alabama to Tallahassee, FL. Hope you have lots of help! Take it slow and stay out of the heat- good luck! Carmen

Oh yeah, boy... I never had any motion or car sickness until the past few years. I always sit in the front seat because our kids are always in the back but it hits big time in the front. I definitely think it is ANS related. Like other ANS sxs, it is aggravated by heavy meals, lack of rest, and dehydration. However, sometimes it just hits out of the blue and other times I can ride for hours with few problems. Here is what I have found to help: peppermint (peppermint gum is great- peppermint candy is better), closing my eyes, eating small, light meals when travelling, stopping frequently to walk, lots of fluid and salt. Reading can be a problem now and I hate that because I use to love reading on long car trips. Carmen

This is a difficult topic for me to reply to but I will try. First off, I do not have POTS but MVP with severe dysautonomia with NCS and tachy-brady. I also have the recent "formal" diagnosis of dysautokinetic-dysautonomic syndrome. Before I go further, let me state that I am a tall, thin thirty-one year old woman. My life changed completely in August 2002. Right in the middle of graduate school, I began expereiencing stroke-like symptoms on a transient basis. One night, I was so severely impaired that my colleagues from grad school took me to the ER. The ER doctor dignosed me with a hemiplegic migraine (atypical, as I had no migraine pain but paralysis in lower extremities combined with seizure-like sxs, as well). The ER doctor was not too concerned about the migraine as I had a normal MRI the week prior. MS was suspected but the MRI ruled that out. What the ER doctor was concerned about was a very loud heart murmur. I had began seeing a neurologist in the month prior due to nasty migraines and the stroke sxs. Once I followed up with my neurologist on the morning following the ER visit, he felt I should receive a cardiological opinion as well. At this point, I entered the world of dysautonomia. My cardiologist is the one who diagnosed me with MVP with dysautonomia and all the other terms previously used. For the next year, I saw my cardiologist and neurologist monthly. I had every imaginable neurological test and many cardiological tests that year. Finally, after a year of not really knowing or fully understanding what happened that night I was taken to the ER, my neurologist finally admitted that I might have had a small stroke- which is what I had thought all along. I have never been the same since that night in August 2002. It was two years before I could walk to my mailbox without being noticably impaired. I walked like a drunk. My eyes were horrible- especially, at night. My hands still are tempermental- my right one, especially. So, this is a very long answer to tell you- yes, I have experienced those "stroke like" sxs with this nutty dysautonomia stuff. And yes, the term SDS has been used interchangeably with dysautonomic-dyskinetic syndrome. I'm not saying this to concern you but to let you know that some things don't add up in all of this. I may or may not have had a stroke and I may or may not have Shy-Drager. I do know my life has changed completely in three years. I would love to answer any other questions you may have about all this and pray that you do not have the same diagnosis as I. Carmen

There are a couple of options for you. One is to order your groceries online. I've never done this but maybe some other friends out in cyberspace can enlighten us how to do this- I've heard it is really great. Another option is to contact your local Department of Human Resources (Human Services, etc.). There are plenty of programs out there (even in rural areas) to help people just like you who need help. If you qualify for Medicaid, you have even more options. Contact your local Home Health agency and they can steer you in the right direction. Start off with either of these two agencies and they will forward you on to someone who can help. Another agency is the Council on Aging. Pull out the yellow pages and look under Social Service agencies. Many places will take you to the store or even do your shopping for you. I'm a former social worker- what a good question! Carmen

I have been where you are- my little girl went through the same thing when she was eight weeks old and as she had been six weeks premature she was medically treated as a two week old. There is NO stress on earth comparable to worrying about your baby- especially, a newborn and uncertainty about whether or not it is life threatening. I know that you are exhausted- physically and mentally. And of course, exhaustion will tip off your dysatuonomia symptoms. Definitely, overhydrate during this period because with a sick newborn it is hard to remember to take care of yourself. Whatever you normally do to help with symptoms, I would increase (whatever you have found to help- of course, don't play around with your meds). I have found that over hydrating really helps symptoms decrease overall and minimizes them when they do occur. Kiss your babies and remember you can only take care of your little ones when you take care of yourself- don't be a martyr. Carmen

I have had simiiar experiences in the past. I know what you mean by the buzzing and feeling upside down. Is it POTS related? I don't know. I do know that it oftentimes is followed by an excruitiating migraine. Sometimes, I have even experienced "flashing lights" during this experience. A neurologist once told me that the migraine process in your brain is similiar to seizure activity so the "flashing lights" and "buzzing" which seem seizure in nature can in fact be a migraine. And you definitely can have an atypical migraine which has the above symptoms without ever resulting in a "headache". It's really bizarre. And then- back to the POTS- an erratic heart can cause a disruption of oxygen to the brain which can cause these freaky migraines or syncopal episodes like you described. Of course, if this is the first time you've experienced this- (especially with the slurred speech and temporary paralysis) get it checked out. Rarely, it can be significant so don't take chances. Carmen

Hi, as you have probably read in other posts I am on infusion therapy daily. It has made a tremendous difference in my life. By this, I mean ten hours of iv therapy a day will buy me a 3-4 hour period of feeling pretty good. So, my case is a little extreme (or as I say, atypical). However, I do think the use of hydration therapy (saline, et al) is highly under utilized. I never knew how dehydrated I stay until I started on this daily regime. I think many of us with dysautonomia have huge hydration issues. It makes a lot of sense based on our symptoms. Carmen

Hi, Ernie. I have quite a bit of experience in the iv department. I have a port a cath in my chest. This means there is a permanent cathether that goes directly to my heart. The entire purpose of having this put in was to be able to give myself iv's at any time without having to go to the hospital. Fortunately, I have an awesome cardiologist who STRONGLY encouraged me to have this done to maintain some control over my symptoms. I was squemish at first- but let me tell you, my quality of life has improved dramatically since having this fluids as needed (which for me is unfortunately, twice daily). I simply hook myself up. I do not have to stick myself to do an iv because I keep my needle in. My husband was taught by home health how to put the needle in (it does have to be changed at least weekly). I can take the needle out to shower or swim and then my husband replaces the needle for me. Some people do the needle themselves but I just don't think I can put a needle in my own chest! Anyway, that is how I have solved this problem. Now, whatever doctor wrote you the subscription for iv's as needed may need to advocate for you. I do not know if you can really be taught to "do ivs yourself" without some kind of permanent (or semi-permanent line) in you. Explain to the prescribing doctor how much the bags help and that you are really having a hard time getting other doctors to honor his prescription. He might be willing to prescribe home health to teach you how to "stick yourself" but honestly, I think it would be hard to do- especially, when symptomatic. But, either way, let the doctor know what is going on- you might can reach a compromise. Good luck! Carmen

Don't let the psych eval. bother you- it is a necessary evil. Most mental health professionals are much more compassionate toward chronic illness than medical doctors. State the truth- be honest about what has been going on in your life and it is likely the mental health professional will not find you "mentally ill" but possibly having anxiety as the result of dealing with health issues. It actually can be an asset to have the mental health professional see you and validate that no you are not crazy and whatever is going on does appear to be organic and may even have psychological components but is not "all in your head". The evaluation will most likely be a brief discussion between the two of you- probably no significant personality testing unless the professional has concerns. Just relax and be truthful. Carmen

Thank you for being so thorough. I have been seriously considering Vanderbuilt but was afraid of a negative experience- you have reassurred me. Carmen

You can go to the Social Security website and fill out an application online. You don't necessarily have to have a doctor complete "forms" per se. You will have to have all your medical records forwarded to Social Security. I urge you to get this process started ASAP because it is a long and tedious process. Make sure Social Security has all your info. My cardiological records were missing from my appication (despite several requests to the Dr.'s office) and I was initially turned down. However,when my doctor asked me about how my disability process was going I told him what had happened and that I had appealed the decision. He graciously wrote a letter on my behalf with my diagnoses listed and stated point blank that gainful employment was impossible for me. The appeal process takes about a year and my hearing was this past April. The judge and the doctor for soc.sec. (they use their own to have an "outside" opinion with your regular doctors opinions). agreed that I was definitely disabled and had been since January of 2003. They made this determination because I had a terrible tilt table in which my blood pressure was neither audible or palpable (sp?). My diagnoses that Soc. Sec. found severe were as follows: MVP, dysautonomia, and NCS. Now, having said this, it is hard for dysautonomia patients to get disability but more and more doctors are seeing how debilitating the disease can be. Please note that I am on approxiamtely 12 hours of iv's a day so my situation is not typical. So, I would certainly go ahead and apply but there are no guarantees for anyone. But, if you don't apply you definitely won't get it- so, good luck! Carmen

I am so sorry. I wish I could offer you some better feedback but I know little about short and longterm disability through private insurance. However, I have just complete the SSD process with the US government. It has taken almost two years but FINALLY my disability has been approved and my benefits will kick in any day. (I will also receive about two years of back payments). So, my advice is if you live in the US go ahead and apply for SSD since you have a work history and the process can take several months to hear an initial determination. I will be glad to give you more information about this process if you are interested. Carmen

I bought a cheap version of a hospital table that slides over my bed and can be adjusted (even tilted) for the specific task of doing crosswords in bed. Bed trays (the kind that just fit over your body and have short legs)- I call it my "breakfast in bed tray" work well, too. These can help you do just about any hobby in bed. Good question! Carmen

Awesome replies everyone! I love the positive reassuring vibe coming from these posts- I almost cried. However, I know not all endings are happy. So, if you feel comfortable out there- let me know some things I can share with others that work and don't work when illness is the third member of a marriage. Thanks a ton! PS. Yes, I am married and know the emotional and financial strain very well. We have been married for seven years and joke we have had our seven years of "for poorer and in illness" now it is time "for richer and in health"! Carmen

Kathy p. you are right on target with all your responses. I was vague in my question because I am in the preliminary stages of starting up this group in south Alabama. When you get a degree in couseling, you get armed with a knowledge of a lot of theories. However, that is all they are- theories. Those of us who post on this board are living the REALITY of chronic illness. That is why I sent out a request of what really happens in your life regarding helping your kids cope with a sick mom (or dad). Books are great and a necessary starting point. In order to lead a group, one most have a solid back ground in the issues they are covering. Yet, what works in academia and the real world oftentimes are not the same. So, there are no wrong answers to the questions I've posted and any feedback is appreciated. As the group becomes more formalized I'm sure I will have very specific questions. Thank you! Carmen

Soup, soup, soup! The higher the sodium the better! I actually have created my own special dysautonomia soup which is a guarantee to make me feel better. Start with a can of chicken broth add a can of creamed corn- heat to boiling then drop in an egg and whisk it quickly as it heats. It's a chicken corn version of egg drop soup. It's much better than it sounds. You can top it with crackers (I personally like french fried onions on this). It's good- I'm telling you. If I feel too bad to stir this up, Good ol Campbells chicken noodle is just as effective. I dilute it with less than one half can of water and put a ton of saltines in. Those are my secret dyautonomia brews. Other things that are standbys are peanut butter crackers. With this you're getting sodium and protein- it helps. Peanut butter and orange juice to drink or milk. All give you a shot of sodium and protein. I could write a recipe book for dysautonomia. For me, these things are what help the most. Oh, and back to the soup thing- soups are awesome because a little goes a long way as far as nutrition. I, too, have a problem of filling up very quickly so soups give a lot of bang for your buck. I have learned that when I do eat out to avoid heavy foods because I simply cannot eat much at one time anymore but soup really fills the bill. Hope this helps! Carmen

When I first got sick I had a Gyn and General Surgeon as my preliminary problems were gynecological.(However, there were a few scary weeks when even the docotors thought I had colon cancer at 28!) Went to various gynecologists including the Department Head at a major research hospital. At that point I was diagnosed with endoemtriosis on my rectosigmoid (lower bowel). One fruitloop doctor (not the Dept. head) had put me on estrogen which kicked off a vicious cycle of atypial complicated migraines. The Dept. Head had a duck over this and told me I could not have an ounce of estrogen because my stroke risk was through the roof with the complicated migraines. Okay, stay with me here. He wanted to try other meds before surgery because he felt surgery would be extremely risky because my bowel might be punctured. I'm not going to get into the horrific symptoms I was expereincing. Alright so, I had this weird endometriosis on my colon and compicated migraines, this bought me a neurologist. Okay, he saw me repeatedly per his request (see me back in month- every visit), ran every imaginable test and told me repeatedly that he felt that my neurological problems were related to my heart. I didn't buy this but did agree to see a cardiologist he referred me to. This was the A-ha moment. My cardiologist was the one to figure out that my autonomic nervous system had gone nuts. So, for about a year I saw my cardiologist and neurologist once a month per their request. Took a chance and saw a different gynecologist who booked me for a hysterectomy within ten minutes of seeing me. She was awesome. (I had no problems with the surgery by the way, and it remains one of the best days of my life). Eventually, I tried a different neurologist (per cardio recommendation) who thought I was nuts. So, I haven't seen a neurologist in almost two years now. So, I am down to one doctor- my fabulous cardiologist and a once a year gyn visit for maintenance. I know this is a long answer but it was a long road to get down to one doctor I routinely see. Thanks for giving me a chance to chronicle my history (the Reader's Digest version at least!) Carmen

Thanks everyone! I would love even more feedback regarding specific things done by all of you that have helped, or not, or which stages in life required different things for your kids. For example, my little boy has had a horrible time getting potty trained and I feel he is extremely insecure about my health. I feel he sees not pottying as a way to "stay my baby" (if he stays little mommy won't get sicker). Keep in mind I am a Master's level therapist so yes, I look for reasons behind everything! Any advice specific to the different ages of children and what has worked for you would be great. Carmen

Hello, I am planning to start a local support group for those with chronic illness. One topic I plan to cover is helping children deal with the chronic illness of a parent. What have you parents out there done to help your kids deal with this huge issue? What specific tips could you offer, what works- what doesn't? Any feedback is appreciated. Carmen

Hi, I am strongly considering starting a local support group for those with chronic illness. One topic I really want to cover is the effect chronic illness has on marriage. I would appreciate some thoughts regarding how some marriages do survive this hugely stressful event and some specific things couples can do to maintain intimacy and committment when one partner is sick. Any feedback would be appreciated. Thank you! Carmen

Your family is in my thoughts and prayers. God bless you and keep you. Try to get some rest and know that there are a lot of people lifting you up in prayer tonight and in the coming days. Love, Carmen

P.V.D. is peripheral vascular disease which is usually seen in elderly male smokers (that's my undrstanding, at least). The ABI test is done while lying down so I don't think blood would pool in my legs during that procedure. Anyway, it's weird. Thanks for replying! Carmen

Just wondering if anyone of you out there have had this strange experience; Chronically low bloodpressure (taken in arms) but an abnormal A.B.I. (taken in ankle). With all my other diagnoses I forget about this but it is really weird. My blood pressure in my legs runs about 30 pts. higher than in my arm. My cardio didn't believe this when I told him and when he checked it in his office he got the same reading three times (30 pts. higher in legs). He sent me to have an A.B.I. which turned out to be abnormal. Thus, I received the diagnosis of p.v.d. on top of everything else. Has anyone else had similiar problems. Your bp in your legs being much higher than the bp in your arms? There is absolutely NOTHING normal in my body! Carmen PS Your blood pressure in your legs should be higher than in your arms but not to this extent.

Hi, I have mitral valve prolapse with a VERY LOUD murmur. I have a fabulous cardiologist who is the one who diagnosed me with MVP with dysautonomia. He is my primary care physician because he is the only doctor I see that has any clue about what really goes on with dysautonomia. So, what does MVP have to do with dysautonomia? Actually, very little. Your ANS and heart are formed about the same time in fetal development. Oftentimes, a problem in one of these systems correlates with a problem in the other due to what was going on during fetal development at the time. While dysautonomia can affect heart function such as heart rate and blood pressue, it pertains little to the structure of the heart. MVP is a structural abnormality. Luckily, it is usually a benign abnormality (but not always). A lot of doctors use the terms MVP Syndrome or MVP with dysautonomia to refer to the symptoms we discuss here on this board. Dysautonomias don't fit into any neat package so if your sxs include the heartrate and blood pressure abnormalities and you also happen to have MVP you will probably be diagnosed with MVP Syndrome or MVP with dysautonomia. Carmen