futurehope

Stace915, What medications are you currently taking? I'm thinking I need Midodrine, or florinef or a stimulant. If I don't do anything, I cannot expect to feel differently.

Have you found any tricks to help your body adjust between sleep and waking up. I can feel poorly in my last stages of sleep, and then when I wake up I feel dead.....like I have no blood pressure and no circulation. Has anything helped you with this? Thanks in advance.

I hope you can get answers real soon. In my opinion, do not underestimate withdrawal from meds. When I had been on benzos, the withdrawal was horrible. Also, the pain medicine you took (Tramdol) probably affected the nervous system.

Eating a can of soup (not the health food low-sodium variety) usually has me feeling pretty good, but with warmer weather coming, I won't be doing this much

Some thoughts that I've learned when having the problem of too may BM's per day: Make sure you are not HYPERthyroid - overactive thyroid Some foods set me off, like whole wheat (though I'm fine with white flour), "health food' whole grains, anything with caffeine Some medications or medication changes could do this Small intestine bacterial overgrowth - do you take probiotics L. acidophilus, to keep your intestinal bacteria in check? Fiber - too much or too little in your diet can cause this problem Us POTsies can get our intestines into overdrive by overdoing, or pushing, or being vertical too long Make sure you do not have a bladder infection - it can stimulate the intestines I hope you figure this out.

I live in Baltimore, and Dr. Rowe had no interest in seeing a "grown-up" with POTS, but he was very nice on the phone. If there IS a doctor at Hopkins for POTS (besides Dr. Rowe) could you let me know? I was evaluated for myasthenia gravis by Dr. Chaudry there. As for the EDS issue, I know nothing about Dr's at Hopkins.

Absolutely, yes. My symptoms prior to menopause were manageable. My life was relatively normal, except for poor stamina and easy fatigueability (especially in the sun), and unexplained "bouts" of dizziness that were incompacitating. But once the bout disappeared (probably due to treating the undiagnosed anemia which I had due to excessive bleeding during perimenopause) I was back to being my "normal" self. I have now progressed to the point that there are no longer "bouts". I am always this way, with "crashes" in between. My dad had similar weird things going on with him and it took him literally 30 years to die. He was weak, didn't like walking, had palpitations from he knew not what, had no stamina, excessive nausea and no appetite. He eventually succumbed to ???? from lack of eating. He had stopped eating all together because of constipation, nausea, (probably had gastroparesis), and died because he wasted away and all body systems had stopped. Malnutrition was a contributing factor. Nobody could get him to eat. I'm scared to death that I have what he has. It takes a long time to die that way. That's for sure. And they really had no idea what was going on with him. I honestly do not think they totally understand what is going on with me either. They call it POTS, but what does that mean and how has it helped my day to day life to have that diagnosis other than I now have a label for it?

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? A doctor pointed out to me when I was standing that my legs were bluer in color as were my hands. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Absolutely yes. I suspect low pulse pressure and the sick feelings that go with it. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? I do not experience symptoms as others do, but upon upright tilt after 5 minutes (the test only lasted 5 minutes), my norepinephrine went to 600+. I know others have had much worse than this, and my test lasted only 5 minutes. I do not know if this counts as "hyperadrenergic"? 5. Have you ever been informed by a doctor that you have low blood volume? Yes. When viewing the results on blood volume testing, I'm in the range below normal, though not severely so. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes. This was the first indication (at 2 years old) that my body was not perfect. It is the symptom I've had the longest. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? My hands are cold most of the time as are my feet. I attribute this to lack of circulation?? I don't know if this is vaso-constriction? 8. Did your POTS arrive suddenly? No. Once the symptoms became noticeable, I realized that I had experienced weird episodes for years that would come and go, but eventually this just stayed and it never went away. I may feel better or worse, but the symptoms are here to stay. I suspect that I had episodes of dizziness in the past that would mysteriously go away. But what I have now has come on gradually. The jury is still out as to whether I am worsening or staying the same, though, when looking at my entire life, I would say I'm worsening. 9. Is your skin pale? When I have narrow pulse pressure. I look like death when I get up in the morning or after a long day. I improve after moving around except if it's nighttime when I look sickly again. 10. Please lists the top 6 worst symptoms that you experience with POTS: 1 -feel sickly when sitting or standing vertically like somebody with no blood pressure 2 -exhaustion 3 -very cold hands 4 -pulse pressure narrowing and inability to think due to "lack of oxygen" to the brain (that's how it feels) 5 -waking up feeling like death no matter how long I've slept 6 -entire body going into a "crash" due to excessive outside activites or stress... a crash means any number of body systems malfunctioning, with exhaustion present in all cases

I did not feel I learned anything because: 1) I'm not a teenager - he seemed to be referring to them a lot 2) I haven't improved - according to him I certainly could have 3) beta blockers made me feel worse and headed me towards depression 4) he said exercise helps - well maybe a bit but I still have POTS all day every day Where are all the "improved" people? Unless by improved he means they now understand they have something wrong with them and it's not in their head. I've seen people on here for years. I suspect he's talking about a subset of POTS patients that improve on beta blockers. I am really getting tired of doctors saying we're supposed to improve when they know NOTHING. Well, maybe they know a little about this condition, but not enough for my liking. I'm sorry I did not have the patience to appreciate this doctor's efforts. Are you on beta blockers and are you getting better? What is the doctor's definition for saying someone is better anyway? Anyhow, it's bedtime for me. Thanks, but this doctor's ideas were not for me.

Questions for yourself that you do not have to answer: Did I have a tendancy towards depression before POTS? Are you on beta blockers or any other meds that could cause mood changes? I'm asking the above because I'm getting from your post that in addition to dealing with POTS, you also struggle with a low level depression. While it's obvious that having POTS totally can rearrange your life, and this is a major adjustment, one can have a mood disorder in addition that needs to be addressed. Obviously, I'm no psychologist, so take what I'm saying with a grain of salt. But, if you are struggling with a mood disorder, in addition to POTS, people can suggest things to you on this forum, but you will still not "have the motivation" to do them. Our suggestions cannot "push" you no matter how good our suggestions are. Honestly speaking, I think you and your psychologist have to work together to find the possible cause and remedy of your "lack of motivation" because that is beyond our ability on this forum. That's my opinion, because I get from your post that it is a bit more than just "adjusting" that is incapacitating you. I'm sorry if I offended you, but I want you to get the help you need, and I'm suspecting your psychologist is saying to just "think" your way out and rearrange your thoughts and all will be well, but sometimes we cannot do that.

I'm glad you made it back okay. Just thinking about your experience makes me ill. Please, if you are going to try something different, where your body is using muscles and coordination that is different than usual, do NOT push and do NOT try to do as much as you did. You cannot push through something like "your heart pounding enough so you could see it." This doesn't mean the end of swimming forever, but I would expect much much less next time and be happy with that. I would take someone along as well. This thing about "being in the water is good for us"....I take issue with this anyway, and I believe people are referring to "walking" around in the water slowly. Swimming is in a class by itself with all the muscles in use and the coordination. Please be cautious.

That's an easy question as I have a first-time office visit with a new internal medicine doctor about 12 hours from now. My advice is, let someone on the staff know ahead of time about your needs and difficulties. On one occasion where the doctor took an unusually long time, and I knew it, I told the receptionist I would be out in the car (I reclined there), and they could call me on my cell phone when they were ready. In another, I walked out of the doctor's office and down the hall to recline on a bench by the elevators. In other appointments, I had asked to be put in a room where I could recline while I was waiting. I am now at a point in my life (and in my disability), where I speak up before I get to the point where I'm going to pass out. You are the patient with the problems and you have very right to be heard to prevent a scene at the doctors' offices. Just my two cents worth. I'm thrilled about the knowledge of your doctors and I hope you get some real insight and help!

Liz, I'm so sorry about this. I do not know anything about this. If you feel like sharing, what kind of doctor diagnosed this and what testing did he use?

That's the spirit! You'll be fine. I'm convinced. Have a great time!

Hi! I was diagnosed at 51 years old and am 57 now.

Hi - I have the same problem, but it is a new symptom. I find that I am constantly hungry, but gaining more weight than would be normal for what I'm eating. As I have a severe hyperadrenaline POTS condition, I am reading Forum postings about blood sugar problems and adrenaline swings, but my endocrinologist just "fired" me, stating that he simply doesn't understand my condition. My POTS doctor simply tells me to eat less, and follow a hypoglycemic diet. yes, I didn't gain weight until I got on Remeron to sleep, but for nine months Remeron didn't increase my weight. Now I have gained almost 50 lbs. Could somebody please help us? Elegiamore Remeron -- ugh!!!!! I was the fattest I ever was on that disgusting pill. They should outlaw antidepressants that make you so fat that you get depressed...LOL

All right. I'm shoving. Go..........You are disabled, not dead. You can manage and you will be able to tolerate more than your anxiety makes you think. You will be flexible and do what needs to be done. You're smart enough to choose what to do and how to manage. Go....... Have I convinced you yet? This is your life.....Live it!!!!!

Can I assume that you know for a fact that you don't have shingles or fibromyalgia?

BTW, I must be low on nitic oxide as well because I did not do well on turmeric And Mack's Mom, if I remember, noticed improvement right away.

Does Dr. Stewart publish his ideas in a form in which I have access? I would like to show my POTS doc at the next visit. Thanks.

My opinion is do not do it without sedation. I did once. Never again.

Boy, your explanation hit the spot with me. I need my sleep, but I feel like a dead person sometimes at the tale end of the night and after I wake up. I hope they come up with a "cure" for this impaired nitric oxide bioavailability. For me, it's not only bedrest that makes me worse, it's sitting in one place too long, like at church for 2 1/2 hours. It takes so much out of me. I know my circulation is not working well because I can tell by my cold hands and feet. I often keep gloves on inside the church to avoid feeling like I have dead cold hands. So what is Dr. Stewart's recommendation for this low-flow POTS? Any ideas?

Firstly, sit somewhere in church where you will not be as conspicuous if you remain seated. I'm always in the back. Many times I remain seated, sometimes I get up. It depends how I'm doing. Ignore the elderly man, unless you feel like saying "I am not feeling good." Secondly, we're all different and you will have to decide based on your symptoms and what you are capable of doing, how you will proceed from here on out. Truth be told, on this forum, other than the above post, I haven't heard many people on here come back and say they are better or cured. Maybe, once they're better, we don't hear from them. It is difficult to hold a job and have a life with this ailment, but it has been done. You have to choose what is important to you and live your life that way.

I don't know the answer, but I'll be flying from the US (Philadelphia, PA) to Manchester UK this August and I'll find out! I'm a bit apprehensive, but I'm determined to see my daughter who lives in Ripon, near Harrogate. So I'm definitely going.

Sophia, You really encouraged me. It feels good to hear that I'm not the only one who needs carbs. I positively get weak without the simple sugars, though I totally agree with you about the glycemic index. That's probably why I do so very well on the Balance Bar. It has protein, fat, and carbs and I feel great on them....better than on plain candy. You've given me permission to keep on keepin on with what my body needs to feel best. Kitsakasa, Thank you for your input. I agree that carbs are great. I think my body need all kinds, not just the complex carbs because every time I've tried removing them, down goes my energy, and down goes my weight. Believe me when I say I've tried on multiple occasions to remove simple sugars from my diet, and I felt worse, unhealthier and too thin.