geneva

Kathy, I want to welcome you to the forum. I can't imagine what it is like for your daughter going through all the strange and long list of symptoms at her age. It is wonderful that you have excellent facilities and capable doctors to work with you in setting up a treatment plan for your daughter.

Gayla, you tell a great story! What excitement you had and it does sound like it was all in good fun. How great your 2 fellow actors knew just what you needed. Hope you have rested some since your performance.

Hi Beverly. First I want to say how happy I am to hear that Nicole is making small incremental improvements. Appreciating the small things in life really takes on new meaning when you are hit with something like POTS. I don't know the answer to your question about beta blockers specifically but can share my experience. 4 years ago in the hospital when I was dx with POTS I was put on Atenolol and Florinef at the same time and for 6 weeks I sank further and further into the worst potshole. Doctors said keet waiting for your body to adjust. I was SO wired all day and all night but because I was started on 2 meds, no one new if it was the meds (wich one) or the illness. Over a long period of time the meds were reduced until I was only taking 1/8 pill of each. When I stopped the beta blocker last fall I was amazed at how much my body relaxed. I can only think that for me some of the adrenaline rushes were coming from the beta blocker so I do believe it is possible. (after dropping Florinef 4 months later I felt even less adrenaline rushes). I agree that it is SO hard to tell what are side effects that will go away or when something is just not good for your health. I hope that Nicole can tell soon what is the case for her. Good luck to you too with your new med.

Angela, look at all the good memories you take with you from this first apt! And don't forgot all the things you did NOT like, so that when you are ready to get another place, whether NY or another city, you will look for one that is just what you want. So good your Mom is going with you. It will be emotional and a good hug every so often will help you through it. As others have said this move home is temporary. Remember to take breaks so you don't overdo.

opus88, so glad to hear your good news. You really have a great outlook on what is happening and have some really good suggestions for clearing the clutter. Every time I clean a closet or cabinet, I really do feel it lightens how I feel. Very therapeutic! Take it easy with all your house reorganization, holidays and bday party but enjoy it all at the same time!

Hi Kristin and welcome to the forum. Dehydration is such a big issue with POTS so I am glad that you have found something that works for you. I was so excited when someone posted about this product months ago and I ordered several packages. Unfortunately for me it upset my electrolyte balance terribly and I had to stop drinking it. Someone else I recall had the same problem. But, we are all different and something that works for 1 doesn't for the others. That's why it is so good we share all the good and the bad experiences!! I hope you will share more of your story so we can get to know you better. Looking forward to your posts!

Oh, Stacey, sorry to hear this latest turn of events. What's the old expression that bad things come in three's?? OK, already, you are due for some positive news! I hope everyone gets an effective treatment plan and begins to see improvement soon. Having both inlaws in the hospital last year during the holidays was difficult for us and when they came home they had weeks to go to improve. My husband and I did the cooking but were fortunate to get home health care in twice a week to monitor their medical receovery. I hope that you and Jim can find a similar solution.

Corina, I have not undergone the test but wanted to wish you the best. Be sure to speak up for yourself if you become uncomfortable or need to take a break. Good luck!

Stacey, wow, that is a lot to have on your plate. You should put a message on your answering machine that says "sorry, I am in a potshole right now and can barely deal with my own issues; please redial someone else!" Stacey, just my poor attempt at humor but I know when it comes to family that you must be very clear about what you need and in this case don't need. It is good that your dad is making improvements and I am sure that the changes in your parents' lives are hard for them. My guess is that although you have been challenged with POTS for 9 years, you have handled it in such a way that your family sees you as the "strong" one....and of course you are....but that doesn't mean they can put everything on you. I am sure they don't know where to turn but there are agencies that can work with families to help. Learning how to say no to family can be very difficult and emotionally upsetting of course which just makes POTS that much worse. I hope you can help your sister and others to see that while they may be under stress at the moment, their stress will probably fade in short order, but yours will not. I think it sounds a bit selfish that you would be asked to have your parents move nearer you for the primary reason that YOU (and therefore your husband) will care for them. This does not in any way make you a bad person...the opposite....would either parent want you to become worse trying to look after them??? Maybe you can let your family know that you will be available to participate in a family discussion when you are feeling better and until then, ask them to respect that you need time yourself to get back to your baseline. I don't know any answers, but certainly sympathize with you over everything that is going on. I hope you can put yourself first until you are feeling better Stacey. Take care

Merrill, I don't know how claustrophobic you might be...if it is a lot you can ask to have an OPEN MRI where you are not in the "capsule". I had an open one for 3 MRIs at the same time....(NEVER do that!!).....anyway, the open one is OK but it too is noisy. Because ANY stimulation, especially noise, causes an over reaction I am best to use the sedative. They are all short acting. Oh, the open MRI takes a little longer than the closed one. I would suggest you call the place where you are having the MRI done and ask if they administer any sedatives. If it is the hospital where you are going they will probably put the valium in your IV (with dr. orders)...I like this the best because it is immediate, you do the test and by the time you are finished the med has pretty much run its course. If it is somewhere they can't administer drugs then you need to take a pill before the test. I take Ativan 45 minutes before I have an "event" that I need it for and it lasts maybe 4 hours. There are lots of good suggestions here and you have sorted through them well...just don't over think it!! I mean that in the best possible way. I know what you mean when you say you would rather that things stay the way they are versus learn something new that is wrong. I think that is a normal reaction so don't beat yourself up for it. Just do the best you can to stay in the present and don't anticipate the next steps. So hard to do, I know but you seem very strong. You can do it Merrill!

Merrill, what a great poem!

Nina, you are always such an inspiration! Congratulations on your accomplishment. Have a wonderful vacation.

Jan, I have learned something new tonight! Had no idea they could do sitting down. The machines I have been hooked up to don't look like they go down that far...but I guess they must. Hey, thanks for sharing that. The number of requests for seated mammograms is going to shoot up if the news run a story letting women i on the secret!

Ayelet, My apologies....the cooling vest I have came from www.coolsport.net (not coolsport.com as I posted earlier). geneva

I have never heard that before but strangely I have wondered about that possibilty. Although I am not a fainter, I do make sure that each year when I have my mammogram done, I explain to the tech a little about my condition in advance. I always sit down between the right and left side pictures. When I stand legs together straight I get much higher tachy so I don't take chances! A friend of mine is opposed to the "roughness" of mammograms and has a test instead that I believe is called a thermal scan. I haven't checked into it so no more information. scary stuff...that poor woman.

Ernie, I am so proud for you that you got out and did something really nice for yourself. I hope some of the clothes in your cart fit! Funny how sometimes a new outfit or even a haircut can make us feel a little better. Please don't let the rude person spoil the outing for you. I can almost promise that she went home and continued to think how rude it was...speaking without thinking most likely...otherwise how could she have missed the wheelchair. The fact that she apologized when she realized her mistake is refreshing. Anyway, it was a big step for you to go out and I hope you will do it again. I became ill 5 years ago but it was 4 years ago this past Thursday that I was diagnosed. I still remember that day so well and asking, OK, now that we know what it is that is wrong with me, what do we do? I have a life to get back to! Anniversaries are really difficult emotionally. Ernie, I hope that you have a better week ahead and just remember how much you have accomplished in the last 4 years. It is truly amazing to me.

Juli, welcome to the forum. As briarrose said we have a number of new people and if I remember correctly we have several young members like yourself. There is a lot of good information on the site but always feel free to ask questions!

Danelle, isn't it nice to know that your absence is noted? I hope that you find some peace with the things that are apparently causing you additional stress at this point in your life. It is hard enough with POTS alone. Take good care of yourself and come back when you can. all the best.

Merrill, that was a lot to take in at the grocery store but I guess the only good thing is that you probably know what caused your middle of the night scare. I have trouble with iodine dye but have never had trouble with the dye used for MRI. I have also had my share of MRIs and the ones where I have taken something to relax me I have preferred. I can do them without but it is really hard for me to lie still and depending on what areas they will do, some of these scans can last a long time. My neck, spine etc was 1.5 hours with all the stop/start action etc. When I accepted meds it was always valium and I didn't have a problem with that. Oh, btw you could run into someone in the med field who might try to make you feel a wimp for wanting drugs but just ignore them!! I like the idea of the aromatheraphy!

Ayelet, welcome. We are glad you stumbled on to us! You may be one of the first to ever post that doctors know about dysautonomia in your country. It is a very frustrating situation here to have an illness that your primary physician or many specialists have never heard of before. The best is to find someone who is willing to learn from their patient who has done lots of research through sites like this one and from experience living with the illness. I have a lot of problems with heat and where I live it gets very hot in the summer so I have one of the cooling vests. I bought mine from www.coolsports.com and really like it. They also gave me a discount because it was for medical use. I don't know about some of the meds you asked about but perhaps others will have information. again, welcome!

AprilMarie, so good to hear from you. As it is often said others DO notice if you haven't been on in awhile and you stay in our thoughts. Congrats for being at 33 weeks AND still working and going to school. I am amazed that you are able to handle so much. Take care over the holidays and find time to rest before the big day! As I recall you are having a girl, right?

When I read your post Tearose the first thought that came to mind about how I would describe ME in one word is "changed". Changed to me means that some things in the last 4 years have been good...I would even say improved (more patience, understanding of others, married!) and others have changed for the worse ( health, loss of job and more isolation than I feel good about). But, I admit that for a time I got lost in the illness. I am glad to say that is not true today. I think it is important to acknowledge the illness and then move on, but for each of us that time is going to be different. BTW if anyone hasn't read it, in one of the DINET news letters there is a very good article on the STAGES of CHRONIC ILLNESS. At the onset of my illness I was living and working abroad and only came back to the States for additional medical care, taking 3 weeks "vacation" time to find a diagnosis and treatment. I left my job, friends, apt, etc and I kept telling myself I would BEAT this, whatever it was and go back to my life overseas. No matter how much I tried to use positive affirmations, however, I wasn't getting better, only worse. As it turned out I never returned to that life so it has taken a long time to redefine who I am. Matter of fact I think I am still a work in progress!!

I hope everyone is enjoying the holiday. It is refreshing to read the sharing of recipes for the traditional Jewish foods for the holidays. Much peace to all.

Sorry I am a little late to the party today....but just wanted to add that your pcp sounds like a regular nutcase, not you! I am so thankful that your cardiologist ran tests and took you seriously and I think I would drop a note to your pcp with your lab results to ask him to add to your records so that, if you do go back to him, maybe the next time he will really listen to you. I don't know anything about glucose levels and what they mean but I hear you loud and clear about how the heck do you know what is "just POTS" and what is something else?? POTS symptoms include just about everything so it is hard to know. Maybe Nina has it right with the 4 day rule. I am glad you have had time to put this morning into perspective and remember that YOU know best. Hope you have a restful weekend.

I don't have disk problems although I had chronic neck pain that started with POTS. It was thoroughly investigated by several doctors but nothing found abnormal. Massage therapy and yoga have been helping that problem. Because of the heat sensation and that it occurs when I am just starting to move around in the morning I really think it is my body trying to move blood around. Why, oh why do I need to be aware of every little transaction in my body???!! Couldn't these things go unaware like they did for the 40 plus years before I got POTS (LOL). Interesting that only Merrill and I have the heated sensation. I do get the tingling if I have hands over head but it has not felt hot to date when I do that. Usually I get the arm tingling and then lightheaded til I pull my arms down. It doesn't really bother me because I know it only lasts a few seconds and then it is over. Still wondering if it is because I am in need of fluids immediately on waking. thanks for the replys.