futurehope

I had a headache with the first pill. If you are having a headache, it may mean you need to start on a lower dose. Ask your doctor. My headaches did go away after about 8 days. I had to "get used" to having normal blood pressure.

I would suspect the aspartame. It was creating other problems for my husband like muscle aches. Neither my husband nor I will touch artificial sweeteners any more.

I get shots. I've received injections before and after my POTS diagnosis. I had asked my neuro if there was any reason to avoid allergy shots and he said no. I do tend to feel more fatigued than normal on the day of the shot. The only concern is that my allergy doc will not allow me to be on beta blockers , just in case they need to do a "rescue" injection of adrenaline should I experience a bad reaction to the allergy shot.

Welcome, Amy! I was similar to you for years. As a matter of fact, other than 2 isolated discreet incidents of dizziness and/or tachycardia, the only thing I noticed about myself was a lack of stamina whether I exercised or not, and a need for a higher than average amount of sleep. During my discreet episodes, I had been tested by a cardologist using a holter moniter and a treadmill, and during another bad spell, I was evaluated at the "dizzy" clinic at Hopkins. Neither of the above two doctors gave me a POTS diagnosis. It wasn't until after menopause, when all symptoms started appearing that a neuro diagnoses me using a TTT. Anyhow, welcome again!

Congratulations! Someone on another forum wants to know how to gain weight. Are you willing to share some tips?

Poohbear, In the past I've had EkG's, and a 24-hour holter. I haven't been told of anything out of the ordinary. For me, I go in phases;sometimes for weeks at a time, my heart does its thing;at other times, I'm fine. At this point, I'm not overly worried. I've had these weird skips for too long for me to be worried.

This is a test. Dinet Home Page Thanks. I've always wanted to know. I've seen people put their own private web pages in their signatures.

I've seen several people here have items in their postings such as, My Diary The words, My Diary are then associated with a web address so that when we click on the words, we go to the website. How is this done? Thanks.

They hit themselves in the chest to "get it going again?" Thankfully, I haven't been having too many heart flutters recently, but in the past, when in one of my phases, I've been known to hit my chest and say something to myself like, "okay, let's do this right" Sounds silly, I know. I have no idea if hitting oneself can do anything for the heart rhythm, but hey....what am I supposed to do, sit there and wait for it to stop?

I took the generic fludrocort for 2 weeks. I took .05 mg/daily, half a .1 mg pill. At the same time, I began to take 1/4 tsp sodium bicarbonate in the AM and the PM. This was to increase salt. The fludrocort/salt combo got my pulse pressure where I wanted it. Unfortunately, my bladder reacted poorly. My interstitial cystitis flared up, meaning, my back hurt, my pelvic area hurt, urinating burned and I had to stop taking it. The good news is, it appears that though I am no longer on the fludrocort, the drinking of the salt solution in the AM and AM is still giving me the same results.

Forgive me if this has been covered already. After reading an article given to me by a contributer to this forum, I'm suspecting that my POTS is caused, in part, by autonomic neuropathy. I get the purplish mottling in arms and legs upon upright posture. My POTS came on relatively gradually. My sweat test showed neuropathy on my toes. My norepinephrine went to 699 upon upright posture which is high (above normal), but not as high as some people with hyperadrenergic types of POTS. Is this autonomic neuropathy progressive, and progressive to what outcome? In my case, it sure looks like over a very long time, I've become gradually worse. I could compensate for the POTS for years to the point of being relatively normal, until I was 51 YO. I will ask my doctor at the next visit, but I thought that some well-informed person here might know. Thanks.

Yes. My grocery chain in Maryland was giving them on October 6th. There have been other days as well. And the food warehouse COSTCO has been giving them this month.

I don't know what to tell you. I'm 55 years old, diagnosed at 51. I am a walking enigma wrapped up in a riddle trying to figure this all out. I wish I knew the answers to your questions. It sure seems that everyone has a different story to tell. As for me, I am currently taking .05 mg florinef daily, and drinking 1/4 tsp baking soda in water before I go to bed and upon arising (for salt). I also remain acutely aware of my calcium intake, as florinef depletes calcium and I know my bones are losing mass already. I also struggle with interstitial cystitis, a chronic inflammation of the bladder. I find myself experimenting to keep that problem at bay as well as the POTS. I have not arrived at the perfect combo of meds to get me where I want to be but I have not given up hope. I'm constantly on the lookout for new avenues to explore with my doctor. As for what you have to look forward to, my neuro said he has patients of all ages and men as well as women, but many of his POTS patients tend to be young women. I pray your illness departs as soon as possible and that you become one of the success stories. Maybe someone else here can answer you as you what happened to them if this all began at a young age? Best wishes.

Sweetie, Are you on any medication at all? If not, it is time for you and your doctor (if you have one) to get more aggressive with treatment. Please get better soon. And it's difficult to tell in any particular case whether you will get better, worse or stay the same. Also, you may have "potsy flares" that come and go. All my best.

I'm sorry you are having to deal with this at a young age. It is frustrating beyond belief to feel older than you are. And, there is no way I would ever stand in a grocery line for 20-30 minutes if I can help it. If I must, I lean over the cart with my leg up on the rung of the cart, but like I said, there is no way. I usually go when there are less people and go for less items or take my husband and sit on the old-lady bench. There are many times I've sat on the bench or gone to the car and reclined. Yep. It's a pain. But that's the way it is. I can understand how you feel. I'm sure many of us can.

I had to take Septra DS (double strength) recently for a UTI. I HAD to take it. The Cipro didn't work and my infection was bad. Ordinarily I wouldn't have tolerated this drug but I had no choice. I noticed that after about 2 pills, the side effects eased up a bit. I believe that when there is infection in your body, you can feel really poorly and that when the pill is first introduced and it kills the bacteria, you can feel even worse. After a few days I felt better and the pills were not affecting me as much. I'm sure your doctor thinks you really need this med. Is there really any other option? Would something else be better tolerated or are you just going to have to muddle through? I wish you a speedy recovery and minimum side effects.

I believe that I get blood clots relatively easily since I developed one in a superficial vein after a 4-5 hour airplane ride across the country. My symptoms were pain and tenderness and a feeling of heat I think. They could see mine on a venous doppler. And I got this even though I wore 30 HG compression hose the entire trip. I do have a tendency toward varicose veins so maybe that's why the clot formed. I've also had this about 15 years ago. For me, its probably related to my varicose veins. Are you all right now?

I stick with the "fine" when people are asking me how I am. I only go into details for family or close friends. That way, I've never said to them bad or good so there is really nothing to talk about. If I feel inclined to share more, I might say I'm having a "bad" or "good" day. That's how I speak to doctors. But, I'm agreeing with you. It depends on who you are talking to. Most people do not get the variableness of this ailment, neither do they understand it much to begin with, so I keep my responses simple.

Thanks for your support - all of you that responded. It's great being able to share with you all.

Jacquie802, FYI, the first time I tried florinef, probably 3 years ago, I tried the entire .1 mg pill the first time and I got a bad headache and I never tried it again.... until now. For one thing, I'm doing 1/2 pill - and for another thing, I KNOW that I have low blood volume, and it's possible that I was not as bad off blood volume wise three years ago. In any event, no headache this time - yay!!!! Ernie, I can certainly relate, but there comes a time where it is very obvious one needs outside intervention, and my time has arrived. I really pushed myself to the absolute breaking point before I gave in. But, anyway..... Tune in for the next installment. The real test is to see how I am in a few weeks. I'm also realizing that I definitely will need outside help with my insomnia. That's next on my agenda. I have done a sleep study and done everything the sleep doc said and I cannot do it on my own anymore. I do not want to be on tranquilizers or sleep meds since they all quit working after awhile. I do not like the idea of anti-depressants either. But I've reached a point where something needs to be done. I have no idea what. We'll see?

What's thermotab?

I tend to be one of those people who will try ANYTHING rather than medication. I get side effects from almost everything. I can count on it. So, with that in mind, you can understand why I haven't taken anything for my POTS since my diagnosis four years ago. If I did try any med, it was usually one or two pills (or two weeks at the most), and then I'd quit due to the side effects. I have tried to do exercising including legs, sleep clinic, water and salt loading and keeping my food intake to healthy foods only. But, my "natural method" fight is over. After the last two visits to my neuro, in June and now, he could SEE by my pulse pressure how poorly I was doing. I also told him I'm getting worse, and he now had my blood volume results in front of him. So, I took my first florinef this AM. After reading some previous posts, I took it at 5 AM with food and then went back to bed at 6 AM. That is the routine I'm usually in with feeding my animals and all. I took 1/2 of a .1 mg pill and it's the generic form. Well, I kind of felt like I was speeding and that my body did NOT want to sleep, but I know I didn't get enough sleep so I lay there and I did fall asleep for a bit. Now that I'm up, I actually feel like a human, albeit a bit "wired". I don't feel like I have any orthostatic intolerance symptoms. I hope this keeps up. I spent four years avoiding meds. I dislike side effects and the potential for harm (like losing more bone mass which I can't afford), but, hey..... it's obvious to me that I do need something. I will definitely try to continue on this course of therapy. I told the doctor that I wanted to be more aggressive in my treatment. After four long years and worsening symptoms, I am well aware that this isn't going away and I need some outside intervention. Boy, can I be stubborn!!!! Anyway, here's to meds from a "high as a kite" POTS patient!!

AJVDK, I wish you the strength you need to make it to next week. And healing thoughts your way. About the ER experience, I wonder if the doctors are just "in training" and do not really know enough about everything they encounter?? If that is the case, I wonder why "consults" aren't done right there with someone who DOES know...for example, a consult with a neurologist on call. I suspect it is a money issue or a time issue. Maybe if a doctor on staff at the hospital called ahead before you got there, they would pay more attention to your case? Maybe all of us should ask our "primary" POTS doc ahead of time HOW to have a productive experience at the ER. For example, one time I called my gastroenterologist because I was having a pain in my abdomen. HE told me to go the the ER and it turned out, that when HE was there (later on), he examined me. His office happens to be adjacent to the hospital where he works so it was relatively easy for him to make a stop in the ER. I think if your physician gives them the heads up, HE can tell them what tests he wants done or what he wants to do. Just an idea. I don't have any ideas about what to do if your physician does NOT suggest going to the ER. I was thinking that maybe a call into the physician FIRST would get them to take you more seriously once at the ER. When talking to the doctor you could say, "Should I go to the ER?" I do not know your particular circumstance, and I only want the best for you and to be relieved of your pain ASAP. Healing thoughts your way. (It sure sounds like the Procrit was the beginning of this saga for you.)

Ithomas, I'm facinated by your trial of B-vitamins and how you believe they helped you. How did you come up with the idea to take thiamine and the dose? I also may be hyadrenergic POTS, though I don't know if it's primary or secondary. Thanks for any info on the B-vitamins.

I had to fill in papers, but the lawyer handled some behind the scene stuff of acquiring doctor's notes, etc. I would encourage you TO CONTINUE the process and keep telling yourself that if you have to look a judge in the eye (during a hearing), that you could tell him that without a shadow of a doubt, you cannot work. If you can honestly say that to yourself , then you CAN say that to a judge. You may be really sorry if you give up now. Keep on keepin' on...... You can do it. And, yes, get a lawyer. They take a cut if you win (up to a limit), and I don't think you pay if you lose.