geneva

Ginger, good to hear you are able to post some. Sorry for all the bad news in your life the past few months but hey, at least you also had some good news to report. BTW, my husband who is an excellent golfer put a ball through one of our windows last year!! Glad you got into Mayo. The one thing you can know for sure about a trip to Mayo is that you WILL get tested from head to toe and all regions in between! I hope they can find out how to improve your current situation. I don't think I know where you live....just wondering, is this a long trip for you? Driving or flying? Aren't you proud of your daughter for wanting to wear your bracelet and sharing with all her friends and teachers just how special here Mom is? I think that is wonderful. Take it easy Ginger. Easier said than done, I know. I have lots of company arriving tomorrow and I keep reminding myself, to pace my activity. Geneva P.S. I am trying to imagine what it would be like to ski with POTS!! Just the thought makes me dizzy!!!

Nina, I think it is a great idea to offer the cards alone in addition to purchasing bracelets. Like Emily I have found that close friends and family have really liked reading the info on the card. Even though they know something about my illness, they felt they learned more from the card. It also gives them something to read from when they get the question, "what is wrong with her?" I sometimes wonder what exactly they DO say (before card)!!! Nina the bracelets came out really nice and being adjustable is a big feature!! Thanks. (p.s. how many days/hours til that vacation starts???)

Merrill, glad to hear that you got a response back regarding the contrast dye. Seems you had the same experience of not needing it that Nina and I have had. It is good that you will get the feedback before the long holiday weekend. Get rid of the suspense. Be sure to keep a pen and paper near your cell phone and write down any questions you may want to ask your doctor in advance. I find this to be helpful because when I get off the phone with a doctor I am trying to remember what it was they said (LOL). DO let us know! Enjoy your trip.

Hayley, I will ditto what Gena has said about the foods. I have gluten, dairy and lactose intolerance so I don't knowingly eat any of those foods. I had lactose intolerance before POTS, the others came afterwards. I used to avoid cholocate 100% but can tolerate 1 piece occasionally. YEAH! Can't speak to the chair issue as I too don't faint. I am sure someone else will post.

Ginnysgirl, I am sorry that I am not familiar with the problem that you describe. Maybe others who are knowledgeable will post. Just wanted to wish you and your daughter a very successful visit with the new doctor. I hope that she can get additional help. All the best!

Merrill, BREATHE and think calming thoughts!! Your doctor may not have ordered the contrast dye. I have had some MRIs without...matter of fact, if I can trust my memory (hah!), I don' think my spinal ones had contrast. Just call tomorrow and set your mind at ease.

Merrill, so glad that everything went ok for you today. I am the same in wanting to know exactly what the procedure is going to entail. I don't like surprises either with all the tests and I am sure all the input you received helped you today. Great job on the imagery! I also understand about the Xanax when the adrenaline kicks in. I take a very small dose of Ativan and it keeps my adrenaline in check and also my bp from heading for the stroke zone. It is a shame that you couldn't get the entire spine done at once as you wanted. I had mine done and yes, it is 1 1/2 hours in the box but once you are in there does it really matter??? Isn't it funny how when we are doing something we would rather not be doing we conjur up the "treat" we will give ourselves for getting through it....your meal sounds delicious!!! Good for you for treating yourself. Rest and enjoy the remainder of your weekend.

Emily, hope you know I was just teasing you!! Merrill, we are all thinking about you and hope you feel up to checking in soon.

My doctor wanted me to try this drug several years ago to see if it would help with fatigue. When I spoke with my pharmacist about any concerns he and I reviewed the drug sheet together and found that it said a person with MVP should NOT take. Since I have MVP I did not try it. I am glad it is working for several of you.

Merrill, sometimes benzos are prescribed for people who have muscle tension. Maybe that is why your sciatica area is feeling better. It is good the Xanax is working for you...it seems to "enhance" your sense of humor!. By now you are probably through with your MRI. Hope you were comfortable! Emily, Can you explain the grapefruit connection again??? I was laughing so hard! You and Merrill in the middle of the night...well, it is like Saturday Night Live!!!

Tearose, I am glad you were able to get in to see your doctor and get meds. I did cringe a little when I saw you were put on levaquin. I was given that and had horrible side effects and I am not the only one with dysautonomia to have serious problems with it. It is one of the more powerful antibiotics. Perhaps you have had several doses and are doing OK...I hope so. I know we are all different with meds but couldn't help feeling a need to voice my concerns (hope they are taken in the right spirit I intended). Rest well and I hope you will be able to get some sleep.

I think when it comes to our kids we try even harder to be "normal" and at this time of year there is a lot of pressure (mostly self imposed) to make the house etc be just what we think it should be. I might also venture to suggest that you might still be harbouring some guilt of having to move to a different home to help you.....and therefore you have tried extra hard to make the holidays in the new house, exactly the way they felt in the previous family home when your sons grew up. Well, what is done is done...so rest, let others wait on you and come back to us when you are feeling a lot better.

Peace be with you and with Gene.

Ernie, it is good that there is some form of treatment for the problem identified. I guess there is a reason you have to wait 2-3 months before the next tests??

Nina, glad you got some answers. I don't know but it sounds to me like no surgery is a good thing. I hope that PT and pain management can give you some relief. I know that you have been down that path before. Isn't the EMG where they stick the needles in you and twist them as they use an small electric current?? I hate that test! I know you have had it before but it just isn't any fun. Well, at least it is after your getaway.

Emily, I am glad you took the time to check in. It sure is hard when you are feeling overwhelmed to post isn't it? But know that your absence IS noticed. And you are entitled to a day without being the funny one, although we love your sense of humor! The holidays and the family related events, not to mention the change in weather seem enough alone to exhaust my energy points these days!! You are smart to guard yours closely. Merrill, sorry to hear things are getting busier for you but maybe that will keep your mind off the upcoming test and results. That is great that you did OK with the Xanax and how smart to try it in advance of your MRI. I forget but when is your test? Good luck! Might Mouse, I honestly don't know how you are still on your feet! When do you leave for your well deserved vacation? I have heard from others that the place you are going is wonderful....do send us that post card, OK? good nite all

Oh, Corina, what a day you had! You must surely be exhausted but I hope this will help your doctor to work with you in some way. I can imagine how frustrating it was when you just could not see the missing item in the picture or remember a story part....I know I would be the same.....not that it is helpful, but what exactly is short term memory anymore!!! I am so glad this is behind you and you can get some much needed rest. Have a peaceful weekend with no quizzes!!

Kathy, To answer your question, it is very common to have flare up of symptoms. Also depending on the type dysautonomia she has she may also be effected by overstimulation and this is certainly the season for stimulation. Often just being in a quiet place can help. The best advice I can think to give is for her to listen to her body and take your cues from there. Heavy fatigue is often a symptom but the severity may increase or decrease over the course of her illness. Since she just started a new med, I would give a call to the dr. office or pharmacist and see what they think...could it be contributing to her fatigue. Is there an alternative med that might be worth trying for her. Most people here have some degree of med sensitivity -- from low to extreme -- and what is therapeutic level for "normal" individuals is usually not true with those of us with POTS. BTW, I remember a post called "dysautonomia for dummies" that was written by Dr Grubb that was posted on dynakids.org. I remember that it was written so that the average person can understand ANS problems and is good to share with family and friends. But, I will say this, there is no single path for the recovery or management of dysautonomia (in my opinion) because it is a group of symptoms and we can all have different variations. But, I think you will find helpful information as you and your daughter work through finding the right medical treatment for her. all the best.

Corina, I was also thinking about you and wondering how you did with all the testing yesterday? Today is probably a full rest day for you but hope to hear from you when you recover.

Glad to hear everything went smoothly for you Angela. Moves are always stressful so if everything arrived safe and sound that is wonderful! Now, get plenty of rest so you can enjoy the holidays!

Hi Merrill, I haven't been dx with the problems you describe but have had chronic pain in my neck and shoulders since the onset of POTS. I have tried a variety of pillows. When I was on a beta blocker and my supine bp would drop too much I used a pillow wedge, raising my head. You probably do NOT want to use this type! I would always slide down in the night and make my neck hurt worse. Once I stopped the bb, I switched to one of those pillows made for neck support....what they are called, I can't think of right now!!. Anyway, you probably have seen them. The outer edges are raised and the center lower. I find it helps with the neck pain. Hope you can find something to bring relief.

Is it just me or does this seem like a big deal having a person with POTS featured in a major publication??? Thanks for sharing the story.

Butterfly, welcome to the forum. You sound like a very happy young woman in spite of the health challenges. How wonderful that you have supportive parents and family to help you through the difficult spots. You have a great way of expressing yourself as the butterfly has returned! Very clever and appropriate when your heart is pounding. Again, welcome!

Mindylee What a beautiful group of thoughts. It is a refreshing reminder of how we should all try to live our lives. I've printed it out to post so I can look daily. Thanks for sharing.

Mindylee, I am sorry you have received this news. It seems with POTS we have to make many accommodations to our lifes but your health is most important. Right now try to focus on getting better. And remember, although doctors have said they want you on the thinners for life, that CAN change. Give yourself time to heal from this round of problems and then visit with a specialist as suggested above. You should gather all the information before making any permanent decision. I know this is a very emotional time for you and while it is easier said than done, I hope you can set aside the longer term decisions and concentrate on what you need to do right now to get back to your normal baseline. Feel better soon!