taylortotmom

I love Zomig for migraines!!!! Okay, here is the deal. It is to be used the second you think you might be getting a migraine. It is not a preventative med or one that does any good once the migraine actually hits full force. It can cause some strange sensations but so can migraines so it can be hard to tell if it is the med making you feel weird or the migraine. I am one of the few people that Imitrex, etc. would not be appropriate for do to my torrid history. And now, I can't take Zomig anymore because I have a history of atypical (of course!) complicated migraines so I was told the Zomig was contraindicated for me. When I was able to take it, it was fabulous and I held onto those pills for dear life- they were worth their weight in gold. So, I don't know what your migraine history is but if it is safe for you to take Zomig, try taking it sooner next time. In the meantime, call your prescribing doctor and explain your current sxs. (I know you already know to do this). Ironically, I am recovering from a doozy of a migraine myself and what saved me and the only thing that could break it was my iv fluids and mega doses of sodium. Hope this helps. Take care (and stay off the computer when you have a migraine- you know this too, I'm sure!) Carmen

Okay, we all need to laugh sometimes... If Dysautonomia had a soundtrack what songs would be featured? Here are some suggestions: "I Get Weak" by Belinda Carlisle; "You Spin Me Round and Round"; "Every Breath You Take".... You get the idea let's hear some other ideas! Oh, and some songs definitely would not be featured such as: "Jump" by Van Halen (we don't do well with the up/down thing) "Run to You" by Bryan Adams (Sorry can't) Life is hard for all us but there is humor even in bad situations so let's see what you all can come up with! Laughter is the best medicine.. Love, Carmen

Hello, everyone- thank you for your posts. SDS is an intriguing area isn't it?Geneva- thank you for your encouragement and Kite#7 please keep me abreast of your journey through this complicated maze we've been presented. Sunfish- okay now I have a soapbox to get on. If iv fluids are mentioned again you might want to strongly consider them. The port-a-cath I have is in my chest and I take 8 hours of fluid over night and one more bag during the day (this takes a couple of hours). This sounds horrific and I was very squemish at first. You will be amazed what a difference it can make in your life. I never knew how severely dehydrated I was until I started doing these fluids at home- whoa! They contain not only saline but large amounts of sodium and potassium which are crucial to the management of dysautonomia. I actually have had a few periods of feeling fantastic over the past week (albeit- shortlived- but hey, I'll take them!). Don't let the iv thing freak you out- it has been a blessing but it took about two months before I could really see a difference. Just keep this in mind. Good luck! Carmen

In some of us, the judicious use of caffeine can help with the symptoms of fatigue. This my sound simplistic but coffee is as much part of treatment plan as anything else. This is two cups in the morning to get me up and going and then one-two carbonated beverages if needed in the afternoon. This is with a doctors consent only as caffeiene is dehydrating and not a good thing when you have tachycardia. But in a few cases it can help without being detrimental (I have bradycardia too so the caffeine helps pick me up when I am sluggish). Just a suggestion- I know caffeine gets a bad rap and for most POTS people it is bad news- but not all. Good luck. Carmen

Hi, I'm a bama girl and just wanted to wish you well on your trip here tomorrow. We have some awesome doctors who know a thing or two about autonomic dysfunction. Dr. Cecil Coughlan is the most revered (I think he is in Birmingham- UAB). It's ironic that your going to Birmingaham of all places. So.... I hope your trip is uneventful but if something does happen your in good hands- go to the UAB ER. Good luck! Carmen

Thank all of you so much for replying to my post! Is the SDS diagnosis definite? No and yes. I have "formally" been diagnosed with the dysautonomic-dyskinetic syndrome which is used interchangeably with SDS. I require approxiamtely ten hours of iv treatment of fluid a day to have any "normalcy" to my life. This is not a complaint because this actually has made a huge improvement in the quality of life I have. My husband and I have had to move in with my parents as we have two small children and I am no longer able to physically care for them full-time- alone (my husband works long hours). The SDS possibility comes from the fact that despite all the run in the mill usual dysautonomia treatments, I have progressed steadily over the past two years in the severity of symtpoms. Formally, I would have good days and bad days and might even have a month or two where I was pretty okay. No more. There are no longer good days and bad days but good hours and bad hours. Where dysautonomia usually doesn't follow any typical pattern my new level of disability has been pretty consistent. It is consistently getting worse despite treatment. I know that sounds so negative but that is my reality. I have an extremely strong faith and support system. I don't think God is through with me yet so I am not to the point of "giving up". An irony is that when I first got sick I went back to school to get my Master's degree in Counseling. I always had the idea I would be a private practitioner helping kids. God had other plans. I am unable to work at all and have never used the degree professionally. Yet, it is ironic how much I have had to rely on my own training to deal with my own life. Chronic illness and terminal illness require an inner strength I don't think anyone really understands unless they experience it personally. So, that is where I am in life right now- dealing with a peculiar illness that took a peculiar turn. Thank you all so much for all your posts! Carmen- also known as Ms. Atypical

Thank you so much for responding. Yes, I have posted on NDRF and received a call from Dan. He was extremely pleasant but it seems I am a minority of a minority. Dysautonomia is such a mysterious and misunderstood disorder that finding anyone that has similiar problems at all is helpful. Maybe somewhere out there is another young mom going through the SDS stuff (potentially, SDS) but I pray that I am in fact a rare if not isolated case. Thank you again! Carmen (I am 31!)

Hi, need to connect with any women who have been diagnosed (formally or informally) with Shy-Drager or had the term dysautonomic-dyskinetic syndrome applied to them. Understand lots about dysautonomia (been diagnosed for two years with MVP with dysautonomia with NCS and tachy-brady). This is a new one (diagnosis) and more serious. Need some support from any woman out there in this situation. I also receive hydration therapy via port-a-cath and need some support from others going through this same level of treatment. (On florinef and toprol- this is over and beyond all that- thanks!!) Appreciate any support- I know how debilitating dysautonomia is for all of us. Carmen

Last April, I was extremely symptomatic and still made it to Disney World with a husband and two kids in tow. We travelled by car which was an eight- ten hour trip (one-way) for us. Here is how I was able to do this while very, very sick: #1- knew there would be no way to do everything I wanted to do so decided what one or two things were most important to us each day and planned our days around that activity; #2 we had two- three hours of down time in the hotel each day (rest and cool off in the pool during the hottest part of the day); we stayed on the Disney resort so the Hotel was just about as much fun to the kids as the actual parks!; #3 I had a water bottle in my hands at all times, #4 stayed off any ride that would flip me upside down or otherwise throw my equilibrium out of whack; #5 ate consistent meals each day even when it wasn't convenient, #6 enjoyed being with my family as taking my children to Disney World was a dream come true for me. As others have mentioned, you might want to get a wheelchair for use on vacation even if you don't normally require one. I did not but I know Disney specifically will do whatever necessary to make sure visitors with disabilities have a great vacation. We had a fabulous trip and hope you don't let this terrible illness keep you from enjoying life! Carmen

Hi, I have a port-a-cath which allows me to get fluids at home anytime I need them. This is a cathether in my chest which goes directly to my heart. I am able to administer fluids (usually 1-2 liters when symptomatic) at home without having to go to the ER. It has given me a lot of control over my treatment and I am spared from having to explain why I need fluids to doctors unfamiliar with dysautonomia. The fluids raise my blood pressure and do essentially the same thing as Florinef so they have been helpful. Carmen

Hi, I would love to hear from others who might be receiving hydration therapy at home via infusion. Specifically, anyone who might have a port-a-cath. I have had mine now for two months and have been receiving up to two liters of fluid a day. Would love to hear from anyone else who has had this type treatment. Thank you! Carmen

Hi, I'm new to the forum and would like to share some encouragement. Poohbear's post was exactly what I have experienced. In addition, my faith has been deepened. I cherish each day with my children and feel blessed to be home with them even if it is under bad circumstances. I have no judgement towards others because having a debilitating illness has made me realize that sometimes you just don't know the whole story when dealing with others. We all have mountains to move. As terrible as this is living with this cruel and mysterious illness,I would not want it to go away because of the value it has in my life. It stinks- yes, but it also has been an experience I am very thankful for because of the changes in myself being sick has brought. I am not the same person I was before I got sick. I know how fragile life is and take nothing for granted. I appreciate you for illuminating some happiness here! Carmen PS As a newbie, I am trying to figure out how to post so I apologize for my previous goof-up!