geneva

Emily, let's see if I can remember the contents of my POTS bag (without actually going to the car to get it!). I decided to keep a separate bag so that I wasn't always trying to get everything together just for a ride to town. This way we can jump in the car and know I have anything I need for flare ups. a 2nd full set of meds + vitamins heart monitor -- (the kind Tearose turned me on to that you wear) bp monitor various aromatherapy essential oils -- ex. peppermint for nausea thermometer small salt shaker tiger balm pain patches soft collar neck brace "bucky" support pillow for your neck extra pair of compression hose snacks bottled water and gatorade my folding seat/cane is always in my car too. I am probably forgetting some things but you get the idea. Hope no one is offended we are off topic.

Anemone, I am sorry no one has responded to you. It is probably because your post is appearing under the "Information" section and not the "general discussion" section where we look most frequently. I don't know how to suggest getting your topic moved without retyping in the appropriate spot. Nevertheless, I just want to say that I am so sorry for your friend. It is terrible what is happening to him. I don't know him from the forum but perhaps he posts with a different name as many do. I wish I knew something to offer but I am not familiar with his situation. He was obviously aware that something wasn't right within his body to have the foresight to ask for you to come and stay for support. How frightening for the both of you. I will say a prayer that the doctors are able to help him. You are a very good friend to him.

Hi Naomi, I wanted to join the others in welcoming you to the forum. I am sorry you are having so many problems and some of them unable to determine the cause. It does sound like a visit with a neurologist might be a good step for you. Also, if you haven't had a chance to review the information in the handbook I would encourage you to do so. There are some very good ideas on what works and what doesn't. good luck and I hope you feel better soon.

tearose, just wanted to wish you a safe journey tomorrow and a good med. visit on your trip. I have a POTS BAG in my car at all times with all the essentials and my day trip bag sounds like yours!! BTW do you mean there are people out there who do NOT start days in advance to prepare for a trip????? Earlier today I was making lists....I am a very good list maker (lol)....for a day trip in 2 weeks. stay warm!

oops!

Hi again Emily, You asked whether to use the term POTS or something else. I have found through personal experience that "POTS" get you nowhere. Saying dysautonomia or a disorder of the autonomic nervous system has been more beneficial for me when I have had to visit the ER. One resident told me that POTS was not in their computer at the hospital but that she could find info on dysautonomia. I believe that nina recently wrote that she had similar experiences. Also, I remember reading a post a long time ago where someone suggested saying that the ANS disorder is neurocardiogenic in origin....at least that is what I recall!! (not sure if I spelled that right????)

Emily, even I felt calmer for YOU after reading all the wonderful information posted above. Sounds like you and your mom are making the best use of your time and making inquiries. I am sorry you are still feeling so bad but knowing that once the gb is out must help some. I have not had surgery since POTS so I don't have anything to add in that regard so I will go for a little humor. I did have an outpatient surgery the year before pots and I can add: definitely talk to you surgeon and anesthiologist the day of surgery....reassure them this is not just a routine experience for YOU (although you are glad it is for them) and ask them to take good care of you. I too joked with them asking the surgeon if he had stayed up late watching our NFL team in an overtime game....he laughed and said yes, but he quit drinking in the 3rd quarter!! Then I turned to the anesthesiogist (50ish years old) and asked if he was one of those trainees I read about in the pre-op papers I signed. He laughed out loud (he was very nice) but the nurse was indignant, informing me he was the head of anesthesiology!! I told him he would do and he thanked me!! Then I asked if he would mind putting in my IV since the nurse had tried twice unsuccessfully and he was very gentle and I never felt a thing. That was my first out patient experience and unlike you, I didn't have others who could help me visualize step by step what to expect. This may sound ridiculous....but....the thing that freaked me out the MOST was that I had to walk....on my jello legs.... to the OR. If that is common practice in other hospitals, demand a wheelchair!! Do you have an appt tomorrow with your doctor??? Rest well!

This is always a difficult question since each of us have different levels of exercise intolerance. I found in the first 3 years that no matter what type exercise I tried I would pay for it on a delayed basis the next day or 2. Frustrating! But last year when I tried once again, this time with a yoga instructor, I found that I could do this and felt a great deal of benefit. I do get tired but not the heavy fatigue. Also, no matter have small the weights, I can never use them without crashing. It seems lifting my own body is challenge enough. Good luck as you try to find something that works for you but know that it may take lots of starts to finally find the right combination for you.

Oh, Emily, I am so sorry that the test itself seems to have set off your gallbladder troubles. I thought the test would be over in an hour and the CKK out of your system but I guess that didn't happen. I have never had the HIDA so I'll remember that for future use perhaps. Listen, whine all you want about how bad you are feeling and the concerns you have about surgery. Not all of us here are as brave as others....I know for one I would have worries but the best way I know to take away or reduce the concerns is to learn the most I can about what is ahead. Emily, just remember, you are GREAT at doing that! Seriously, look how you have worked hard to get the correct diagnosis. I would think all your doctors will look at you with a little more respect since they dismissed your concerns which of course turned out to be the correct ones. I am so glad the Levsin helps and you got some rest. I find it helps me too. I hope you can have another restful night tonight. I'm keeping you in my prayers, my friend.

Blackwolf sorry to hear you are feeling poorly. Here's a thought....and only a thought...but could your bp be dropping??? Occasionally that instant feeling of fatigue hits me or when I wake and just can't get up and go back to bed over and over...I have checked bp and it is generally very low...too low. I don't know the med you are referring to but since this started before the new med, seems like it might be from a different cause.

I saw Wimbleton on the earlier post and asked my husband to rent for us tonight. It was really enjoyable! Good lists...thanks for starting this topic.

Jill, it is so encouraging when someone has a really good doctor visit to report! I am glad you have someone good to help you. good luck with the tilt on the 25th.

Hi Dawn, You are very courageous to make the trip alone but once you get to Mayo, you are in good hands. I described it like going to the medical version of DisneyWorld....lines, but incredibly nice, patient friendly people to help you through the ropes. I hope that you will be able to get some answers. Safe journey!

Hi Emily, I have had you on my mind all day and sending the best thoughts as you went through your test. You are very brave! I am so sorry that you now have to get ready for surgery but thrilled that others on this forum have had the same surgery and can tell you how to "instruct" the surgeon to take extra care for you, given POTS. Kudos to you for continuing to push. I know without this group it would be easy to just "accept" what doctors tell us but instead you listened, made up your own mind and went for it....that says a lot about you and how determined you are to feel better. I am sure you will have a lot of doctor calls and preparation to figure out your next steps and the when and where so I really hope that you will try to get plenty of extra rest this weekend. take care!

Nina, that is wonderful about the bracelets!! Think of al the people who now know more about dysautonomia...it is encouraging. Michelle, I will be sending a donation (yes, snail mail!) in the next few days. Hope others in the position to do so will join me. geneva

Tearose, we have the same thought when it comes to recommending movies....I don't remember them, so can't think of any to suggest!!! I haven't been to a movie theatre in 4 years so I always watch movies months after they come out. I guess the last we may have seen was 50 FIRST DATES....it was really funny (I think!). The main character has more memory problems than ME (LOL). Emily, I hope you appreciate how hard I had to think to retrieve the name of a movie just for you....very tough work but you, my friend, are worth it. On a more serious note, Emily, while I think it may be necessary to prepare yourself for future surgery, I recommend that you take it one step at a time....get through the HIDA on Friday and hopefully as Nina experienced, you will get your results on the spot. If surgery is the word, remember you have everyone here ready to "assist" you. Sleep well.

Merrill, glad that you have a plan that will hopefully help reduce the pain you have been enduring. It is good if you can have a PT to work with you who is willing to learn about your illness. I have been lucky with PTs in the past who have taken an interest in my "uniqueness" and really tried to customize our work. I have a soft collar and really would like to wear it more than I do. My neurologist said the same as what Merrill reports that the muscles will get lazy VERY quickly wearing the brace. He did tell me it is OK to wear in the car to stabilize my head. I have found that yoga and massage therapy have helped but if I get really bad pain, I will wear it a few hours. Ginger, I can appreciate how you must be feeling. Our 3 kids were home for the holidays and after 3 days I ran out of steam. My husband and the kids had a lot of fun that I couldn't but I try to look at the fact that I did pretty good overall and I was just so happy to see them. I don't however think our families can fully appreciate how we want them to have a fun, lively life but that at the same time it can be devastating to be the one left behind.

Emily, I am so happy that the doctor today is more willing to check things out. Of course, it may not be your gb, but with POTS the norm is to rule everything else out first, right? Of course it is...what's the matter with those doctors up there? (LOL) It sure seems like eliminating the gb is a good plan, especially since you have the vomiting which would seem to distinguish it from IBS. Over the last 2 weeks my GI system seems to have slowed down several levels....do you get that too? I may have waited too long to realize that and take corrective measures (prune juice --yum). So, I have been having a lot of pain but manageable with the anti-spasm med. I hate waking up with the pain cuz I know that my day will be spent thinking how to get things moving, not eating anything good and putting a heat compress on my tummy all day.....a waste of a good day. Isn't it frustrating? Did the doctor who gave you Levsin tell you to take it every day or as needed? I take Hyosycamine (?sp) which I think is the generic. It really helps stop the pain caused by the spasms. I hope you can get in to do the Hida scan this week. I will be thinking extra good thoughts for you and hoping that you can get plenty of rest before hand. feel better Emily!

Jessica, you "sound" so much better. I am really happy for you and hope that the rest of your pregnancy will be more comfortable for you. Hope Ethan is better soon and doesn't share his bug with Mom. April, you are almost at the finish line!! Congrats! For those of you who take on pregnancies with POTS you have my utmost admiration and someday I hope your little ones understand just how very much you wanted them. All the best to you moms-to-be.

Hi Emily, I haven't been on much the last couple of weeks with all the kids home for the holidays so I was so sorry to log on and see that you have had another painful attack. I can understand how frightened you must be. Several years ago I went to 2 different ERs, almost doubled over in pain. They did the xrays etc. Both times I was told it was "probably" IBS. One dr. said add oranges to my diet!! and the other said he wasn't about to prescribe meds considering I had POTS. I am really glad you are pursuing this further and it is great that your Mom will call as your best advocate to get someone to see you and get you the help you need. I know that the Levsin drugs do help me some when I get the pain but I don't vomit as you have which does make it seem more like gallbladder than IBS. I am really worried about you Emily! I have been in a GI potshole myself the last 6 days and bland food is my diet but I know I haven't been as sick as you. Please keep us posted on when you see your doctor and don't let the medical carousel get you down. You KNOW something is wrong and there is a doctor out there who can help you....just keep pushing. Sending you lots of positive energy.

Ginger, my experience is much like what Martha wrote. Various doctors were so sure MS was responsible for my "weird" symptoms (before upright tachycardia kicked in). I had Brain MRI followed by spinal tap, followed by spinal MRI to see if "MS was in the early development stages". All those tests were normal. When the upright tachy began, I was hospitalized and eventually dx with POTS.

Thanks Nina! Enjoy your holiday south of the border. HAPPY HOLIDAYS to ALL and lets hope for a more peaceful and healthier New Year in 2005. geneva

Hi Blackwolf, good to hear from you. Sorry the pain is still a big factor for you. I haven't tried the med you asked about but perhaps someone else will post. Just wanted to say hi and hope what you are doing will make you feel less pain.

Amy, WONDEFUL news about the appointment. Isn't it nice to be thought of as so "unique" that a doctor WANTS to see YOU?! Also, sounds like a very thorough pysch. visit you had and she is one of the better ones so I am glad you found her. Now, STOP trying to convince people in the medical profession that you are crazy (LOL). Ok, well, don't tell them about lying on park benches in sub-freezing weather!!! I hope you will let us know how your lab results are and your appointment. It really is good news to have someone take you so seriously (other than those here, of course).

Gena, sorry the nightmares are back. I wish I knew an answer but I don't as to why these happen as related to the ANS. I have about 3 different sleep patterns and my body decides when I go from one to another and in the same regard I have times when I will have nightmares several nights running. I don't always wake with heart racing but occasionally. A friend of mine read somewhere that nightmares are usually an indication that you are low in a vitamin...she couldn't remember which one and I haven't seen my doctor to ask him. I guess that is possible. I know some days I get a better variety of foods in my diet than others and maybe I miss some nutrients on the not-so-good days. I can never find anything that triggers them when they happen. I stopped watching the evening news years ago thinking seeing all the bad news before bed could be a trigger. I do know that as I have improved, I have had fewer incidents of them and now only rarely go through these periods. I also read recently in a magazine article that if you do NOT dream, you are not really getting the best sleep. Wonder what the answer to what if the dreams are nightmares???? I know I don't wake up rested, do you! I have observed that when I nap in the day time I have never had the nightmares....so, take more naps is my answer, I guess!