faithinspires

Jacquie, I have coughing spasms all of the time like that. But I have asthma, smoke, , etc. I know I need to quit, but told my doctor I would do so in 1 year, as my life was too stressful at the time. (sick child, divorce & disability for me etc.). So I keep saying when my life with regards to all of this is settled, then I will quit. My doc agrees that if I try now I will probably fail. Pyschologically, I am coming to terms with it more and more all the time. I hope that your cough improves, I do cough to the point I can't stop, and do throw up from it sometimes. Get well soon! Renee

bamagirl, This is an interesting topic. I was not diagnosed until after I had given birth 3 times. However, I have had symptoms since I was a child. I did have a failure to dilate with my deliveries. My first child, I was in heavy labor 36 hrs, never dialated past 2 cm, they tried everything to no avail and my daughter became distressed, so they did an emergency c-section. (18 yrs ago). With my next 2 children, I had a failure to dilate, but they had better success with medications to induce, and a gel to force my cervix to dilate. So, I delivered them vaginally. (10 & 12 yrs ago) I wonder if it did have anything to do with this condition? Renee

Jacquie, Hi! Sorry to hear you are feeling miserable. I know that I have one virus or infection after another and when I have them, it makes me entirely more symptomatic & it takes me longer to recover than other people. Usually if symptoms last longer than a week, I go to the doc. Last year added all up I spent 6 months on antibiotic...pllbbhh! I would go to the doctor, in case you are getting an infection and do need an antibiotic. Since my daughter and I are not allowed, (like most people with these conditions or that are on the medications that we are), over the counter cold medications etc. They have come up with some different ways for us to treat our symptoms. If the doc prescribes cold medicine...we ask them to leave out the anti histamine. So we get the cough med with coedine. They tend to give us stronger antibiotics now, as we seem to be more resistant to the weaker ones. Other than that, holistically speaking, I use a vick's vaporiser, mentholatum ointment, drink hot tea, eat hot soup, take vitamin C, and use a sinu cleanse. (I buy it at Walgreen's drug store...its ackward to use at first...but brings wonderful relief for my sinuses, headache, and throat.) Get extra rest, take care, & I hope you feel better soon. Renee

Melissa, My daughter and I who share this condition, have been told that we have Raynaud's Syndrome due to the condition. It usually shows up in the hands & feet, but can affect other areas. It is due to poor circulation. If we are cold, which is always...our hands and feet look red, then purple, if very cold white. They are ice cold and it can become painful. Raynaud's phenomenon (pronounce ray-noze) is a condition that makes it harder for blood to reach certain areas of the body. Raynaud's phenomenon is a condition resulting from poor circulation in the extremeties ( i.e. fingers and toes). In a person with Raynaud's when his or her skin is exposed to cold or the person becomes emotionally upset , the blood vessels under the skin tighten and the blood flow slow. This is called "vasospasm." Hands and feet have fewer large blood vessels and, therefore when a vasospasm occurs, it is harder for the blood to keep flowing and these areas may turn blue because less oxygen is reaching the skin. The skin will also feel cold because less blood is reaching the skin to keep it warm. The docs all said that it is very common for us to have this. Other than that my skin tends to be extremely dry and I have had some unusual rashes as well. Don't know if this helps...but thought I would mention it in case it does. Renee

Hi Dayna, I have been too sick to post for quite some time now, but thought I would chime in. I don't know for sure but I have heard of many people with this condition who do gain weight, including my daughter. In her case we wonder if it is due to some of the medication that she is taking. In my case, I have experienced the opposite, I lost over a hundred pounds in less than a year. I am fighting to maintain my weight or gain. I don't know that my weight loss is attributed to this condition. I do have many gastrointestinal problems, so that may be a factor too. Prior to being sick I have usually been overweight. My daughter & I have the opinion though that the condition can affect your weight either way. Our thinking with that is that autonomic dysfunctions can affect your gastrointestinal system, just like any other autonomic functions. I remember when I used to be overweight but I was well then, so I would gladly go back to it. Being this thin has its down side that I never realized before it happened. Worrying about the weight loss, feeling like I look like a skeleton, knowing it happpened due to being sick, trying to replace a wardrobe over and over. Being threatened with disgusting boost or feeding tube, etc. So enough rambling. Just thought I would share our guesses from our corner of the world. Also, to tell you chin up...I used to think I wanted to lose weight...til I did. Take Care! Renee

I have not posted in quite some time, as I have been very ill. All meds are failing. I have however been keeping up with reading the posts. I relate to everyone's struggles & victories! I really enjoy the humor everyone in this group has! After another 6 months of failing to respond to medications, adverse reactions, & baffling the doctors; I am now finally getting somewhere. They referred me to a neurologist or who referred me to another one. There I had autonomic emg testing. They repeated TTT, did Valsalva manuever; breathing tests, did axon q-start reflex testing, & thermo regulatory sweat testing. The first neurologist also did further EMG tests with the needles in addition to a different kind of shock test. The response by one neurologist is that I failed the Valsalva, TTT, Axon Qstarts, & thermal regulatory sweat tests severely. There were severe, complex abnormalities with all organ systems involved. And that I have significant autonomic nervous system dysfunction. The response of the other neurologist said that I have early post ganglioc sudomotor dysfunction, vasomotor adregenic dysfunction, and hereditary autonomic sensory neuropathy. Both neurologists, & my EP cardiologist have all stated that this is beyond their expertise as far as NCS/POTS goes. The conscensus of opinion is referral to Dr. Phillip Low at Mayo in Rochester. They have spoke with him on the phone & faxed my tests; dr's notes per his request; so that he can review them & let me know when he will see me. Its a drive & expense their for me...but more than willing to go. (I took my doctor their for some of her testing related to NCS & POTS. I do not know exactly what this all means, so if anyone has any input on any of it, I would appreciate it. I am glad that at least things are beginning to show on tests, that I am getting more specific answers, & hopefully more specific treatment. I can't change this, so I have decided that I just want to know exactly what I have, what it means, & get on with living & making whatever necessary accomadotions that I need to make. Enjoying the things I can in life with a new found apprecitation! Take Care & Hi to all! Renee

Thank you for the responses! Today I am soooo tired. Had the insomnia last night despite trying. Slept 5 hours got the kids off to school. Spent 3 1/2 hours getting about 2 hours of very disturbed sleep. Finally, got up having chest pain. My hr was 142 then, had my meds and waited for them to go to work. My blood pressure is good now, my heart rates around 100 resting. Just feeling completely exhausted and wiped out, waiting for that later part in the day where I feel slightly better for a little while. I am so achey and tired, I sooo just want to take a nap. But no dice...that would mess up my sleep further and my babies are due to come home soon. So I must push on, as it is Friday, our traditional blow off everything else and have some fun together day! Thankfully, they are very accomadating when my health isn't cooperating. So, with the cold outside and not feeling my best today, I think we will opt for watching this movie we have been saving for a special night. Toothpicks in my eyes...that should do it...lol!

Understanding how you feel and wishing you the best with your TTT and appt!

Find comfort in knowing that your doctor is listening to you and re checking things to confirm their are no changes. Just do as best as you can do and stop when you need to. Remember the doctor and other staff will there monitoring, and keeping things under control. These are the things I repeat to myself when I am undergoing more testing. Rest plenty and take care of that cold. Sorry to hear you are sick with one on top of it. And monday take some deep breaths as you begin and remember the test will soon be done. Rest plently after. I think EM's advice was wonderful. Take Care! You will be in my thoughts!

My heart goes out to you! I will keep you in my thoughts and prayers Paige!

My daughter was given this after 15 mins during her TTT, it did not bother her. It was given to me during both of my TTT, after 15mins...my cardiologist commented that although I had a positive TTT, I didn't respond to the injection of that at all. Good luck with your test!

My daughter needed a root canal and the anesthetic did cause her blood pressure to drop and they had to stop the procedure. She later ended up having to have the tooth removed in the hospital and be put under and monitored instead. This all worked out fine in the end. But either way, do be sure to make them aware of your condition and medications. Best wishes with your wisdom teeth removal.

I wish you the best and a speedy recovery with your gallbladder surgery. I had 3 unrelated surgeries this past year. My daughter had three unrelated surgeries this past year. All six surgeries went fine. We did give them information on our conditions and they were very careful to monitor our heart rate and blood pressure before during and after the surgery. We did well. Wishing you the best!

I too have had trouble with phlebitis for years. When I have pain with this I use compression stockings or a thicker compression brace I purchased at the pharmacy. It seems the brace takes some of the pressure off, and improves circulation. I have had several that they did ultrasounds on to make sure they were superficial and they were. For years they had me treat this with an aspirin a day, and then aspirin several times a day if I had flare ups. However, now I am not allowed to take aspirin, due to my stomach problems. I have had a couple of medications that causes severe flare ups where the medication had to be stopped. I now am to avoid any medication that have a risk of causing blood clots. I hope that your phlebitis eases up soon, as I know how painful it can become.

Hi Maureen, Welcome to the group! I am glad you found it! Do check out the websites that others have mentioned. This group and these websites are very informative and supportive. I am sorry to hear about your neice. I know how overwhelming the news was to me regarding my daughter's and then my diagnosis. http://www.dynakids.org/index.jsp here is another related website

I agree everytime they remove something it is common procedure to biopsy it. I had about 13 biopsies for different things in the past year and praise God, they were all benign. The wait for results can be a bit unnerving though. I pray your biopsies are negative as well. I hope you are feeling better and recover soon!

Sorry you are going through this, I hope you feel better soon!

http://www.connectionsacademy.com/state/home.asp?sid=wi This academy is based in WI and throughout many other states. I stumbled across this one recently, and they sound wonderful. Aside from homeschooling my highschool student with NCS/POTS, last year I homeschooled my middle school child. For her I purchased a curriculumn and graded and kept records myself. She is back at school this year, but had we decided to do it again this year, we would have looked into connections academy. With having had to search for homeshooling options whether an on or offline curriculumn and the necessary legal process to do so (which turned out to be very simple...one form.) I have a wealth of information on the subject. So if there are any other ways I could be of help, please let me know.

Thanks for posting these sites! They sound interesting, so I bookmarked them to read later.

Oh my goodness, how stressful. That would definately overwhelm me in my weakness and brain fog. There's no way I'd be able to remember 10yrs of meds or pharmacies. I am struggling to remember the long string of medications they have all tried with me in this past year. Some days when I have a doctor appt if I don't have a list or my medicines with me I have a hard time remembering all that I am presently on. And each time I have an appt. my meds have changed. OOY! You definately have my sympathies! So sorry you are having to go through this, which you should not have to go through! I had checked out the website mentioned in the previous post...it seems very informatative. Keep us posted and if you need to vent or talk as you go through this ordeal, let us know! (I too was diagnosed many years ago with depression and post traumatic stress disorder due to unrelated circumstances. And now like 15 years later, developed the medical conditions I have. Doctors, ssi, and like seem to have trouble distinquishing between the two, or try to blow one off as the other...frustrating) My daughter with our condition goes threw that as well, as many of us do with them confusing the condition and anxiety) My daughter always vents I know if I am having anxiety cuz I am upset about something, and when its my bp/hr and Im gonna faint cuz I am not upset about anything in particular then...along with our standard grrrrrhhhh!

Hope you continue to improve and feel better!

Thank you all for your replies, support, and input. Can't decide what to do with the meds til I see the doctor who can't decide. So just pushin on as best I can and hanging in there. Reminding myself, at times with this illness I have had ups and other downs. (None, quite as sickly as this one...but another up must come!) Just praying for help with my next round of appts. with the docs, as I do each time, then I await the next medication trial with the hopes we've found a better one!

My daughter did not have alot of support with the school system where we live in accomodating her in her condition at the time of her diagnosis. Eventually, she became too ill to attend school even part-time. The schools are to accomodate children with this condition, just as they do children with any other disability. Most will work with you, the doctors and come up with a plan, even if it is a part-time attendance option. As for my daughter, we withdrew her from school to homeschool. She is homeschooling through: American School 2200 East 170th St, Lansing, IL 60438. (708) 418-2800. They except monthly payments for tuition. They send her her books, she does the work at home and sends in her tests to be graded. She will receive a normal highschool diploma. The credits are accepted at Colleges. Course may also be done online. After much searching I found them on the web. They have been a blessing for her, easy to work with, accredited, allowing her to work at her own pace. She is getting all A's. We are pleased she is able to receive a normal diploma and that the credits are accepted at college's. You can request an application/information packet on the web or by calling the above phone number.

So great to hear that surgery went fine and she is recovering well! I wish her a speedy recovery!

I applied without an attorney, signed releases to all my medical records, filled out the questionaire, was approved for ssi 5 months later...but will be up for review.