P SUDIK

Cathy , for me nausea is a constant, I know it is horrible. At best, drinking alot of liquids helps(even if you can only take small sips) ,how about some Popsicles? At my worst I would need an IV and anti nausea meds. Have you tried any of those? Take care of yourself,feel better Hugs P P S you do not want to get dehydrated!

My bedrooms are also upstairs. Usually when I go up at night,I have just straightened up the downstairs,so when I get to the top of the stairs, I am tachy and my calfs feel like I just cannot go anymore,I have to sit or lie down. P

Em,I am going to my pcp next month, I want to have a complete blood work up. My red blood count is always low, some docs. are concerned, some not. Most of my docs. say "you look good on paper" blood results anyway. I guess I'm just trying to help the doc. help me.

Thanks for you input, P

Does anyone take V B 12? If so, do you get shots or take pills? Does it help?

Thanks P

Hi Ware,I hope you start to feel better soon and that you can enjoy your trip. Be safe P

Thanks for sharing Dawg, beautiful pix P

Lina, I know just how tough this all is,POTS alone is so hard to cope with.We certainly don't need any extras.

It seems though, that we all have them. When some of the other things IC ,ect. calm down I really think things will look a little better to you.I sure hope so. Meanwhile,just know others care and understand. LOTS OF HUGS P

Jacquie,so sorry to hear about your being so ill and missing your appointment. How are you today?

I have had to cancel many appts.due to illnes(how ironic?),it is very frustrating. Hope you are feeling a little better today and know that there are so many of us out there who care and are sending you (((((((HUGS))))))). P

I have another question about the urinary problem,but first like to say how much I appreciate everyone's input. I have learned more from all of you than all my docs. Thanks!

Does anyone have back pain related to urinary problems?

P

Ladies,certainly do not want to be negative,butttttttttttttttttttttttttttttttt,I did not have any of these other problems(bladder,chills ect.)until I got POTS. I wasn't "medically challenged" til POTS. Medically Challenged is what a technician at the hospital called me? Should I be insulted? P

Niki, I have been complaining about this feeling,for as long as I have had POTS. It feels like a band around my abdomen , not my chest. It feels like pants that are to tight. Is that how you feel?

P

I do get the chills and feel what I call unaturally cold. Like DD,it happens to me after overexertion(which is not much for me lately)What happens to me is ,I get shaky,tachy,nauseated and warm,then when I put my feet up and relax,I get the chills and cannot get warm.So far,no explanation or solution. P

Thanks T,do you take these electrolyte packets on a regular basis or just as needed?

PAT

T, what are the electylite packets,where do you get them?

Thanks Pat

Oh,double ohmygosh,Wareagle and Dancing Light. This subject Is so hard to talk about let alone deal with ! I have been suffering with this for 4 yrs.,since a lumbar lamenectomy(extensive lower back surg.) That is also when my POTS started.

I kept the bladder problem to myself for over a year. I have had many uti's and the synptoms of a uti and no infections.excessive amounts of blood in my urine,urinary incontinence,and that feeling like the nerves were being exposed and I was being stimulated.So hard to explain! I have also felt like I was jumping out of my skin. I have had to take pain meds. and RX called Pyridium to calm the symptoms. I also a kidney stone in Dec.of 2006. I had a cystoscopy Feb.22,2007,seeing the doc. next Mon. for follow-up.What he did tell me ,the day of the cysto.was "no cancer. no kidney stones, but there is a thickening of the bladder",I don't know what thickening indicates,I'll find out Mon.

I really understand and feel for you. I will keep you posted,please do the same. Lots of Hugs Pat

I have the same problem especially, with individual words.I just cannot think of a very simple word.,but I do want to tell you the best one.

I had a repair man coming,and he asked me where I lived? I had no idea,I gave him my prior location,not even an adress, just a location.

My 85 year old father had to straighten it out,the repair did get here. Soooooooo,I really know where you are coming from.

P

For me gastroparisis is very unpredictable,I feel very bloated at times,that really don't make sense to me.Unfortunately, the only thing that is consistant,is that I get severely nauseated every eve. and during the night and wake every morn. sick to my stomach. After some water and a little food, I feel a little bit better,then the whole pattern starts all over again. Pat

Hi T, so glad you are back safe and sound, and that things went well for you. I have been thinking about you since you left. Welcome home, HUGs, Pat

Per, thanks for replying, now that you told me how to spell it Potts Disease , I have many hits on the internet , you were right about affecting the bones and it says it come from TB. thanks I was just curios since several people mentioned it. Pat

Hi everyone, has anyone heard of pots disease not "our" POTS ? Once when I had to go to the ER,they wanted to put me in isolation because they thought I had pots disease (not sure of the spelling,have not found it on the internet ), anyway ,it may have something to do with TB.Yesterday i went to the hospital for a procedure and of course ,not one dr. or nurse knew what POTS was. The dr. did however ,elude to this other pots. Also my sister asked her dr. if he knew about POTS. he also said something ,about this other disease having to do with the lungs. Anyone ever heard of this? Pat

Melissa,so happy to see your post and to know, you are feeling just a little better. Please continue taking care and getting better everyday.My thoughts and prayers are with you. Sincerely Pat

HI, I have POTS and gastroparisis. I have that bloated feeling around the waist and abdomen constantly,I never had this before I got POTS and gastro. So my theory is that they are related,just a guess? Pat

Morgan, you have been here for so many of us, we are here for you. I know some of what your dealing with ,having had many "dr.issues",since having POTS. I want to offer my support,pls e-mail anytime! I am sending you lots of hugs. Also ,I wanted to tell you I enjoyed reading about you in the news letter,and feel like a I know you just a little better now. Thinking of you Pat

Lina, I just told my father the other day, that I thought all the salt and gatorade could be adding to my bladder discomfort. Take care sleep well! Pat

Oh Rachel, I am so sorry to hear what happened with the dr.'s office,I would really like to see you get another dr. I know how hard it is to find a good one,one who'll work with you. I have called several PCP'S to see if they knew about POTS.Many treated me like I was crazy. I really understand your frustration.I wish you the best of luck and I will pray for you. HUGS and LOVE Pat