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Corina, I am so jealous!! Like Ernie, I would like to reserve a spot in your suitcase. I have been to the south of France and know how lovely it can be. You can be on the beach and not burn up like our heat in the south of the US. I hope the weather is spectacular and you, your family, and best friends create some wonderful memories.

Persephone, I want to express my sincere congratulations to you for your degree and hard work. Your post was so full of good news and how enjoyable to be shared with all of us here. thank you. Your parents sound loving and now you have a beautiful artwork keepsake along with your memories. I am so glad you got to enjoy all the post graduation activities. here's to a bright future ahead!

Jessica, what a wonderful little boy! Congratulations to you, David, and Ethan. Rest well and let's hope your POTS symptoms stay at bay. All the best!

Jan, I am so sorry to hear the news that the cancer has spread. Never give up hope not matter how dark things may get -- or seem. I will keep you and Jeff in my thoughts and prayers.

A good humor is essential! Thanks for making me laugh but let's remember to bring plenty of chairs when we do get together.

Jan, sending my thoughts of support to you and your husband. May you have the strength you both need to get through this difficult period.

Katherine, the new site is GREAT! and for me, it is so much easier and FASTER to access the pictures. Thanks for your time and effort on this project.

Lisa, so glad you were able to get in touch with your son's doctor. I can't imagine what a 6 year old must think of the inconvenience of having a halter monitor to wear but perhaps the results will give you peace of mind about what is or is not going on. Doctors usually like to "rule out" as many things as possible which is good. good luck to you and I hope your son is feeling better soon.

Tearose, it is so good to hear that you have been busy doing something so rewarding (and not in the potshole). It certainly sounds like you used all your past experiences to know how to plan for the party so that you would still be able to enjoy it yourself. Congrats! Wow, 2 kids in college. I can understand your interest in looking for something to do part time but I really hope that your attorney can get your appeal on the fast track. And, that you get approved. good to see you back.

Hi Lisa and welcome. Sorry your young son is sick. I think "wiggles" is so cute! When I first became ill, I had pins and needles in my hands and feet a lot. Most doctors told me it was from fatigue but one suggested it was from low volume. When I increased my fluids I found this usually helped the pins and needles go away. I was tested for muscle weakness (EMG) and other stuff, but for me, anyway, it does seem that increasing salt and fluids makes a difference. I rarely get the pins and needles feeling any more. Has your son's doctor given you any input? It's always best to have a doctor check him out especially if this is a new symptom. Good luck. I hope he feels better soon.

Sue, congratulations to you and your daughter!

Roselover, the single best thing I did for my GI issues was go to a gluten free diet. I did this at the recommendation of a nutritionist. I also avoid dairy and meat. I drink hi protein Ensure. Good luck with your Endoscopy. Since they usually give your meds through an IV you may be able to get fluids. Don't hesitate to call in advance and tell them you need the fluids. Most doctors will accommodate if you tell them what you need. It will really help cuz you will be a little groggy after the procedure and may want to sleep instead of catching up on your fluids.

Tearose, I was just thinking the same as Ernie. I hope you are enjoying time with your sons who I imagine are out of school and that you are not down in the potshole. Miss hearing from you. Take care.

Persephone, glad to hear that your grandad is improving. Don't forget to take care of yourself as well.

I have an Omron and find it useful in managing my health. When I start feeling really lousy, I check there first to see if something is going on so I know what to try. For example if I am suddenly dropping 30 pts in BP, I go for more fluids quickly to try to keep from getting worse. If my numbers are in MY normal range, I either keep going about my business or decide to rest. Over time, my body has gotten used to higher HR as my normal, so occasionally I am "surprised" to see how high it has gotten when doing a reading and I try to make adjustments. Like Morgan, I used to be a bit obsessive checking at the onset of POTS but I found that made me crazy so now I only check if something starts suddenly going wrong. My Omron (without print) has measured my bp in the 180's and as low as 70's but will error out below 70. Also, it has registered my HR in the 140's so I don't have the same experience as Morgan. I think my monitor cost about $60USD. I made the mistake of buying a wrist monitor to keep in my POTS bag in the car. It is useless! It gives strange readings -- even for me-- and will vary greatly. I don't trust the BP readings but the HR is good, although I can check HR with my watch. good luck with your decision.

Hi April, I am so glad you found the forum. I think you will find many here do have a similar story as yours. Unfortunately, it can take a long time to get a diagnosis and even longer to go through the list of meds to see if anything will make you feel better. I had the same problem with beta blockers and only take if absolutely necessary. I am glad to hear that you enjoyed a period of time when you were feeling "well" again. It is not uncommon to have relapses (for lack of a better term). Some people are lucky to have these only be minor but any type of stress can trigger a setback. Again, welcome and thanks for letting us get to know your story.

Hi Lisa, I wanted to add my welcome to the forum. Also, I hope your trip is uneventful but if you have a POTS episode, your boss will get to see first hand what you are trying to manage. Maybe in the future, he/she will let you do conference calls instead of flying!!

Welcome to the group and thanks for sharing your story with us. It is good that you have an understanding GP who was willing to take the time to review material you brought in...not all will do that. I think we have all felt at one time or another, that if we could just get a diagnosis, then we would get the proper treatment and get on with our lives, but it is such a trial and error process with the drugs. I hope you do well with the Wellbutrin.

Jessica, the pictures are great! all the best to you with your delivery. I hope you are able to sleep some cuz home from the hospital with 2 little boys, you will be so busy. Ethan has grown into such a little man!

Carmen, I wanted to also welcome you to the board. I don't have any information on Shy Drager to help you but hope that you will find what you are looking for from someone on board. You sound incredibly strong and I am so happy to hear you have both a strong foundation and faith as well as a supportive family. It can make such a difference.

Pooh, sorry to hear about your fall. Stairs can be trecherous even if you don't faint. I hope the ice and rest are helping with the pain and I support screaming as good therapy! take care of yourself.

Hi Emily, sorry you and Asher had a sleepless night again. I wish there was something I could think of that would break the cycle you are in. You have mentioned several times about maybe it is your bp being too low. For ME, too low bp, puts me into a wonderful sleep state which I call my coma-sleep cycle. I know that my bp at these times is in the 70's or under because that is when my monitor errors out and can't read them. I have had tachy wake me in the night and on the mornings I wake up with low bp, I become tachy the minute I move at all in bed. I guess the point I am making is that for me, low bp gets rid of insomnia. The point you are making about how your heart muscles feel is interesting. Do you think it is something you should ask your cardiologist about? It sounds like for you this is a little different than usual. Is that true or did I misinterpret? I also wonder as Nina has said, could this have any connection with you trying to get on with your life and be more active and your body functions are in a state of readjustment post surgery? I have had heart muscles twitching and electric like pains off and on since POTS. I just had a echo stress test Wed to look at the heart muscles so maybe it is just on my mind!! Not a fun test with POTS btw...I was holding onto the treadmill for dear life...but results were good so I am glad I did it. I am not suggesting this is something you need to pursue Emily but just wanted to share with you that I get the weird heart muscle things, particularly when I lie down. There are just so many weird things that our bodies do and bedtime is when my brain wants to think about all of them and that keeps me awake. Trying to "let go" is hard but every night I try again. Hope you are resting.

Hi Emily, I am so sorry you are in the no sleep hole...but I think it is so cute that at 5 am when you are up, Asher is too! What would we do without the compassion of our pets. They are so in tune with our moods and ailments, aren't they? I like Gena suggestion. I remember when Earthmother first wrote about this natural calm product and I started to order some but forgot (how typical is that?!) Anyway, I am impressed that both EM and Gena have found success with it. I do take magnesium at night and find that it helps somewhat. I also just discovered that if I drink an electrolyte drink after 6 pm -- even though I dilute them with water -- I have more trouble with sleeping. I would have said the problem is the sugar but since I dilute, I don't think so. Do you drink at night? Might be worth a try. Most of the time, I don't know what causes the insomnia. I have 3 sleep patterns since POTS. For me, I use Ativan to break a cycle. I know others disagree but unless I break the insomnia cycle, I become very low functioning. My doctor doesn't want me on Ambien so I have no experience there but seems like you need to switch meds since it is ineffective. And when I have the worst insomnia, I find that I sleep really well from 7 to 9 am or in the afternoon. At first I would try not to sleep in the afternoon for fear of not sleeping again that night but my philosophy now is SLEEP WHENEVER YOU CAN! Sooner or later our dysfunctional bodies get back on board. Until then, take care and rest well, even if you are not sleeping.

Kathy, I use a cooling vest and really like it. The neck band doesn't do anything to help me unfortunately but the full vest does. I think the place I bought it from was coolsports.net. They are pricey but without it, I would never go outdoors for any length of time so over the long run, I think they are worth it. You can get the vest with velcro or a zipper -- get the zipper! I got the velcro one at first and it took me 10 minutes to get strapped in so I was comfortable!!! I also got a discount because I was using it for a medical condition. Kitsakatsa, You made me laugh! Mayo is real big on sending everyone for a pysh evaluation so watch out...keep those legs covered! Stay cool everyone.

Ernie, I am so saddened by your news. This is a terribly difficult decision, I know, but I agree that putting yourself first is important. Sometimes with a dilemna like this, I try to envision how I will feel afterwards if I go and if I don't and then see what is best for me. Your family will not blame you for not going, but will you blame yourself or will you be at peace spending the day in thoughts of your sister? I think we can honor the spirit of someone close to us just spending that day in silence, looking through old photographs and recalling favorite memories spent together. Whatever you decide, please be at peace with your decision. My thoughts and prayers go out to you and your family.