mandasmom

I have had all my questions answered regarding this posting, but don't know how to delete it I'm sorry if I posted this in the wrong location, feel free to move or delete as needed. Does anyone have any experience with Health Reimbursement Accounts? We have just been informed that my husbands employer is no longer offering and HMO/PPO plan, only this HRA. I have to try and sit through a web conference to learn what it is all about and was hoping others may have experience with this so I know what to be looking for. I am concerned that seeing specialists will be very difficult with this new type of plan as it sounds to be catering to preventative services Lisa

Thanks so much everyone. I'm glad to know that I am not the only one out there with these feelings. I am going to use the suggestion of going to sit and talk with people in nursing homes. I am not much of a baby person but I love talking with the older folks, some of their stories are fascinating. I'll just keep plugging along, and maybe someday they will come up with a surefire fix for all of us.

How do you do it? How do you keep yourself in a positive frame of mind? After 10 years of this, I am tired of being exhausted every single day. I am bored to death. I can't find anything to do that I can focus on long enough to accomplish. I have seen counselors, who don't really seem to understand and their advice of be happy for the little you can do, just doesn't work for me. No matter how hard i try, telling myself to be happy when I feel well enough to go sit on the porch, just doesn't cut it. Although I have no intent or desire to ever try and harm myself, I would be ok with getting sick and being gone in the near future. How do all of you keep yourself happy, sane and wanting to keep living like this?

I take Levsin also. The GI doc that did My CAT scan and Colonoscopy recommended taking miralax daily.

They couldn't up my dosage. My HR was dropping into low 30's.

Thanks Mightymouse. I had my abdominal CT scan done yesterday and am scheduled for the colonoscopy on Monday. Hopefully I will have some answers soon.

I had a horrible time with my meds. I would completely forget if I had taken them or not. I finally ended up getting three different colored pill cases, one for morning, one for mid day and one for night. That way I could easily tell what still needed to be taken and when.

I completely understand. I have often told family members that the "ups and downs" are the worst part of this disorder. It's so frustrating to be headed uphill and then run face first into a wall, only to tumble all the way back down the hill. I hope this is only a few steps back for you and that you will be headed uphill again very soon.

Alcohol has always had a major negative impact on me. I won't even touch the stuff anymore. Alcohol tends to dehydrate the body which is usually not a good thing.

Welcome! I completely understand the frustration with doctors!

I got constant headaches the first time I tried taking Midodrine. I tried it again a year later and didnt have the same side effects then

I get weak legs and shakiness but it usually happens when I am dehydrated or having a really POTSy day. It affects my arms also

I have had severe stomach pains a couple of times a month for the past year or so. I was told it was a symptom of POTS and may also be IBS. So I never got it checked out. Within the past 5 days I have had multiple instances of this but in addition to the severe pain it also caused vomiting and finally got to the point where I was passing nothing but blood. Lovely huh? Anyway, that kind of freaked me out. The blood is bright red so that makes me believe that whatever it is, it is an active bleed. My urine has also been very dark with a reddish tint. I also have lots of little red dots under the skin on my chest. They don't itch. I am assuming they were caused by the force of the vomiting. I spent last night in the ER. Xrays looked fine. WBC was a little high but nothing major, RBC was fine but platelets are low. I was also severely dehydrated and was given a lot of IV fluids. I am going to my regular doctor this afternoon to get scheduled for an ultrasound and a colonoscopy and to get repeat bloodwork done. I am concerned about the low platelets. I have no idea what is causing that. Any idea of what could be causing the drop in platelets?

Randi how bad was the prep for the colonoscopy? Polyps run in our family and I have been told I should have one done. I am just afraid I won't be able to get the pre-procedure meds down. I have a very strong gag reflex and find it impossible to drink things that taste bad. I once needed a cat scan and I had to drink this thick, white stuff. I wasn't able to do it

Hi Ajw, I am on Atenolol, Mestinon, Midodrine, Levisin and a ton of other meds. I have appts with my two cardios next month and will discuss it with both of them. I just didn't feel like trying to bump an appointment up in order to ask them about it.

A couple of years ago I had an ablation performed to get rid of AVNRT. The ablation itself was considered a success, it did lower the rate of my tachycardia, however the POTS issues didn't really get any better. I now think that the AVNRT has returned. I am having the same extreme increase in rate, and same additional symptoms as I had before. Is it possible for the AVNRT to recur even after an ablation? I'm not really sure i want to have another ablation performed if it has returned.

I was told 5grams daily at the minimum

I often have the stomach issues with pain that is unbearable and often even causes vomiting. I was prescribed Levisin. It can be taken daily or it can be taken at the first sign of trouble. This medication stops the spasms in your intestines and greatly reduces the pain. I have had no side effects from the medicine.

resting 99/70 HR 65 30 DEGREE TILT 104/60 HR85 70 DEGREE TILT 95/47 HR 150 I did not get Isuprel I was dx'd with severe pots

AJW, It has gotten down to 40 before, quite a few times, ususally when they were messing around with my beta blockers. It has been recorded multiple times on various monitors and even when I was in the hospital and nobody ever seemed to think it was a big deal. But yes, I will be keeping an eye on it. I have an implantable heart monitor so I was sure to record a reading tonight also.

Ernie, for awhile it was getting pretty close to that. It was all I could do to keep my eyes open and stay awake. I kept trying to move my body to get the rate up.

Thanks Rachel and Mighty Mouse, Meds are beginning to wear off, HR is back in the 40's and head is MUCH clearer. I came close to going to the ER when I couldn't reach the doctor. I will not be taking any more of this until I speak with the doctor on Monday.

I recently started taking a higher than normal dose of proamatine. It has done the trick in raising BP however it has really lowered my heart rate. My rate right now is 35bpm. I'm feeling pretty cruddy at the moment, weak, clammy, fuzzy headed and feeling like I need to breath deeply. I am also exhausted and just want to sleep but I am a bit concerned to sleep with the heart rate so low. Am I just being paranoid? I know you aren't doctors, just looking for input.

Hello everyone, I am new to your board, at least postingwise, and thought a quick intro might be appropriate. My name is Lisa, I'm 41, from Marysville Ohio. I have been diagnosed with all sorts of fun stuff (see the signature), have tried all sorts of meds, ablations, you name it and it doesn't work. Dysautonomia is prevalent in our family, my sister was first stricken with it many years ago and then I followed. Her struggles definitely made my path a little easier. From living through it with her, I knew the doctors to see etc. I currently see 3 doctors that deal with POTS & NCS, Dr Grubb, Dr Fouad and Dr Hart. Right now I am on another downhill slide. The ups and downs are so frustrating for me. The last round has really gotten me down because I had a couple of months of feeling pretty darn good and now it's being yanked away again. But eventually I will take a deep breath and regroup and try to get in a positive mode again. Anyway, I am happy to meet all of you and hope that my experiences in dealing with this may be helpful for someone and I also look forward to getting to know all of you Lisa

Hi Amy I was trying to decide where it would be appropriate to post an intro. I have been reading this board off and on for many years and my mom and my sister have both posted at times over the years. I look forward to getting to know everyone!