taylortotmom

Lots of love, sweet Melissa! Carmen

Hi, all. For the new members unfamiliar with me- let me say. hi! I am a member with a non-POTS form of dysautonomia. I, like many of you, have had a long, winding road. Well, for 18 months I was on daily iv treatment at home via a port-a-cath- which I loved- UNTIL I got sepsis and nearly died last October. Well, I lived. Had a rough few months and had to adjust to a non-negotiable gallon of Gatorade a day protocol combined with a pacemaker, Florinef, Zebeta, as my treatment for the dysautonomia. And I started doing well- amazingly well. My kids and I had an AMAZING summer- the best I had felt in YEARS!!!!!! I even made it to Virginia which was a 12 hour one-way car trip. This was almost unbelievable for me. I still have symptoms and I am aware of every choice I make- believe me. So, I don't mean to imply that I was "healed" by any measure but I was far more functional than I had been in YEARS. And then....... I was rushing around putting wet clothes in the washing machine and fell as hard as you can and broke my left shoulder. OUCH!!!!!!!!!!!!!!!!!! My mom is here helping thankfully. So, just keep me in your thoughts as we encounter my yearly "fall" fiasco. Stay well, everyone! Carmen

Another one about good ol gatorade: You take pictures of what's in the trunk of your car before vacation because no one would believe how much gatorade a trip requires. I took 6-8 CASES (10 bottles per case) on our recent 4 day trip to Orlando- and a case of 20 bottles of water. I'll have to see if I can post the picture- it was hilarious- lol. Carmen

On the same note of fashion: You color coordinate your gatorade to your clothes- seriously, it's no accident that most of my wardrobe is chartreuse. It's a running joke because I ALWAYS have lime gatorade in my hand- might as well look cute

I drink a gallon of Gatorade Rain (usually the green) a day. For some reason, the Rain is not as sweet.

Glad to hear you all are settling in well with the new little one. Hope you are able to get some rest can't wait to see pictures!! Carmen

Goodness gracious, Nina- I missed the posts yesterday. I am so glad you got medical attention ASAP and it was handled so quickly. Hope you have some restful nights soon- hang in there. Carmen

Positive thoughts for your step-dad and yourself. Surgery is always stressful even if it is seemingly "minor". I hope everything goes well and the surgery brings some relief to you. Carmen

I was on iv fluids at home for 18 months via a port-a-cath. I loved the freedom of having my fluids as I needed as often as I wanted. BUT, I acquired sepsis and my line became infected and I almost died- seriously. I have done surprisingly well without the iv's (the line was removed in October) by using other pharmacological therapies and a gallon of gatorade a day. And I am really loving not being tied down to a line for 8-16 hours a day! I loved the iv's when I had them and I was terrified when they removed my line that my quality of life would spiral downwards. Initially, it did but now I am actually doing better than I was BEFORE I went on the iv's. Granted, this could change at any time but right now I am enjoying the luxury of being to swim, shower, and travel without a suitcase dedictate to iv paraphanelia- lol. But seriously, as Amy stated- it can be a wonderful option but it can also be a dangerous option so discuss it thoroughly with your doctor. Good luck. Carmen

I have to agree with the benefits to having a case manager. I was on daily iv therapy for a year and a half. Occasionally, a nurse would call to check on me (from the insurance company). I was able to teach a few nurses about dysautonomia, the importance of iv fluids, etc. I was able to justify my requirement for the home iv supplies to them and they were in total agreement. Having the fluids at home kept me out of the hospital which would have been much more expensive. So, be honest- explain why you need particular treatments. Chances are whatever treaments you are using to keep you functional are less expensive than a lengthy (or even a brief) hospital stay. Carmen

It's interesting that you posted this as I just returned from our family vacation to some major theme parks in Orlando This is what I learned about myself these days: I do WONDERFUL at waterparks- can handle the heat as long as I am wet and have gatorade in hand; I can handle rapid coaster type rides IF they are outside as opposed to in and there is no "visual" effects (think Space Mountain). 3-D and 4-D stuff is a no-no- I almost didn't make it through the Jimmy Neutron 3-D ride at Universal- haha. It was really bizarre trying to determine why some things bothered me motion- wise and I think a lot of it was directly related to whether or not the seats were stationary, if I was moving, or if I was inside with "simulated" screens and strobes. I made it through but it did show me some new things about my current state of dysautonomia. Also, we got the fast pass so there was very little standing in line- that would have been a MAJOR no-no. Interesting question- curious about the experiences of others with gravity and motion. Carmen

It is possible that dehydration is causing many of your symptoms. If you are unable to keep fluids down, you are not getting the massive amounts of fluid we dysautonomiacs need. It can cause all the symptoms you describe (Minus the blue toes which sounds like a circulation issue or a disorder called Raynaud's). Dehydration can also cause migraines which can cause the speech problems, tingling, etc- even if no headache is present. This is especially true if you are already taking pain medicine for other issues- as the pain meds may mask the "headache" part of the migraine. So, one thing you might want to consider is iv fluids- heavy iv fluids, even. Talk to your doctor and see if she is willing to set you up with some mega amounts of fluids- it will probably help tremendously.

Severe or unusual chest pain needs evaluation from a doctor. If you feel your pain does not warrant a trip to the ER try increasing your fluids. Sounds like an easy fix but it is possible that the heat is causing you to dehydrate quicker than usual so you need to up the fluids. Dehydration (even mild) can cause chest pain according to my cardiologist's nurse. Good luck- but if you are worried, it's better to be safe and ease your mind. Carmen

Awesome news- congratulations!

If you have access to a pool and someone that can help you- water can be an excellent resource for low-impact training. I am doing that right now and it feels good to be able to do a little again- it helps a ton. Carmen

IF you have a verifiable disability the ADA should apply- but sometimes the interpretation of the ADA is really grey. "Reasonable accomodations" means different things to different folks- so..... Unfortunately, the Social Security disability system is not set up for folks who are trying to continue working (or those who have no choice). In fact, my understanding is you cannot even apply while still working and even have a shot. I am on SSDI and severed ties with my employer ( I had breiefly attempted to work) before I could apply. Your best thing to do would be to get an attorney familiar with disability laws to distinguish what rights you have and how to pursue this- ideally, if you have short-term disability at work this might be a way to get through the next six months or so. Unfortuantely, there are no easy answers and there are a lot of folks (on this forum, especially) in a very similiar boat. Good luck. Carmen

Well, I think the question would be whether or not you had a hx of migraines BEFORE starting Toprol. I have migraines regardless of which beta blocker I try and I personally don't feel that it is the meds giving me the migraines. I attibute my migraines to the heart issues that prompted the meds! My doctor is in agreement with me (crazy heartrate and Bp fluctuations). So, this is something you and your doctor need to look at- how long you have been getting the headaches and whether or not the meds are a contributer or something else. Keep in mind that beta blockers (such as Toprol XL- I was on it for years) lower your BP and heartrate- so it MIGHT be the cause or might not be. Glad to hear you called your doctor. Good luck and glad you were able to get the diagnosed even if it is a diagnosis that no one wants. Welcome to the forum. Carmen

Persephone, this needs to be discussed with your doctor. Your physician needs to know about the "high" episode you described- even though it has passed- as well as your current depression. There might be a different classification of drugs more appropriate for you. Good luck. Carmen

Sometimes, just preparing can arm you with some control to make the possibility of a faint less traumatic. First, your kids need to be aware- on their level- what is going on. It is frightening even for adults to have a lot of medical professionals rushing around checking on mom. So,explain to your children that a faint is just a weird way of your body reacting to a funky heartbeat. They need to know that it is actually a positive thing and a way your body takes care of itself (even though it certainly doesn't feel like a positive thing). If they are old enough, show them how to call Dad at work so they will know what to do if they are alone and mom passes out. You can program the number in your phone and have just one button for them to hit to get up with Dad- if needed. Paramedics may not be necessary every time you faint (if you even faint again) but a plan is necessary. Is there a neighbor that is close enough your children could safely go to and knock on their door if something happens? Have a team in place BEFORE something happens- I have been there- alone A LOT with two small children so I am speaking from my own experience. I do not let the "fear of fainting" dictate my life because we have a way of managing it if it does happen. I do everything I can to prevent myself from getting ill but sometimes it happens anyway- so when it does, I fall back on the plans we have already. I have a cell phone on me at all times. I have my gatorade, crackers, and med info cards on me at all times, too. Everyone at my husband's job is well aware of our situation so they know the importance of getting him to the phone if I call. I have neighbors that are aware, I have a church support system in place with friends that will come and get my kids if I have to go to the hospital- so I am speaking from years of living with this mess. Be prepared- think like a Boy Scout- lol. It really does help. As an aside, taking my kids to the doctor can be one of the worse things for me symptom- wise. It is a horrible trigger for me- the stress of "waiting" with nervous kids- a room full of people- most of who are sick, the noise, the stress of trying to make it there on time, the rushing- all of it- stinks. So, for me it is not uncommon for me to get sick at the doctor's at all so that might be an explanation for your faint as well. Hope some of this helps- hang in there! Carmen

Welcome, I think you will find lots of support on this site. Carmen

Gracious, with the heat and the yardwork it is highly likely it was too much. But, you'll learn when to say when. It is so hard to stop doing things when we still feel good but sometimes, we have to stop BEFORE we feel bad. This has been a hard thing for me to learn as I try to compact so much into the times I feel okay. But by taking it slow we are often more liekly to have more chances to feel good as opposed to one great day followed by a week of recovery.

It is possible there was enough meds left in her system to keep her from feeling symptomatic this morning. Some meds do have side effects that can make us FEEL worse than the symptom we are treating (beta blockers are notorious for this) but you have to weigh the pros and cons with your doctor. When you start looking at cardiac drugs (such as the beta blocker) or psychotropic drugs (Cymbalta) those two classifications are especially dangerous to play around with in regards to stopping suddenly. So, discuss this with her doctor- she might can come off some of her meds which would be great but it needs to be done under a doctor's guidance. Good luck- and good luck to her on her finals Carmen

Wonderful news about the healthy delivery and new addition to your family. So sorry about the relapse try to rest as often as you can

Happy Birthday!

You go to have your first pedicare in two years and get sick immediately when they put your feet in warm water. Geesh, not exactly the relaxing evening I had planned with my little girl!