futurehope

God bless you! Thanks for your input. I understand and agree that discussing my infirmity on a regular basis can be counterproductive. But, looking at it from a different angle, I feel that I can be of assistance to people who are recently diagnosed, or have not developed the coping skills. I was in that position once, and I needed somebody to "understand". It's been a pleasure. Adios amigo!

I could not tolerate the headache this medicine gave me. I could not wait for my teeny dose to leave my body, so that the headache would leave me as well. How could you stand the headache?

Janey, It sounds to me that in addition to coming to terms with your illness, you are also disentangling yourself from a mindset. Your parents put a high value on appearances and you realize that you are not "appearing" sick on purpose, and that you have no control over your disability. Your parents are waiting for you to get better. Well........you may or you may not, but your limitations are here and they seem to have trouble understanding. Prepare your mind when you interact with them. Prepare to be misunderstood, and to be told to "pretend". Because, it sounds like this is the way they are, right? I know these are your relatives and that you want a relationship with them, but just be prepared. Maybe over time they will come to realize your limitations. I do agree with one point, though, and that is if illness or disability are mentioned too often among "healthy" people, they tend to turn off. There are exceptions to this, of course. So, in general, accept what is, be matter of fact about it (no looking for pity, and no self-pity), and others will notice your acceptance of yourself and they will be more comfortable around you. Do not take this to mean that you are to avoid asking for help, just know which people would be most available and helpful beforehand. The more you are accepting of yourself, the more comfortable others will be around you. You learn after a while, who you can share certain things with.

Zyrtec made me really tired. I was not sleepy. Yes, they can make you feel that way. Atarax makes me feel that way too, but I have to take them or my bladder acts up.

While we are on the subject of "hyperadrenergic POTS", I have some questions for anyone who might know. I was measured for possible inclusion into a study at NIH, so my exam was brief. My supine posture was followed by standing for 5 minutes only. My norepinephrine was measured first, while supine, and then, after standing for 5 minutes. I think my norepinephrine was in the 600's or 700's, I can't remember just now. It was elevated. Question: When people say their norepinephrine was high, is there a protocol as to how many minutes of standing is involved? My reading was done after 5 minutes of standing. Maybe others report their results after having stood longer? Question: What is a normal reading of norepinephrine after standing for 5 minutes? Question: Does the norepinephrine level continue to climb the longer we stand? If this is the case, then I cannot compare my reading of 700 + to anyone else's reading, unless they were standing for exactly 5 minutes like I had been? Maybe their reading is different because they stood longer, or I stood for less time than they did? Thanks in advance.

Tilly, I can be embarrassed by this condition because it is not visible to others, and my pride wants me to "keep up the fake front" of being okay, when I'm really not. Obviously, if I were in a wheelchair or in a cast, I could not "hide" and "pretend" I'm okay. Like I've said before, having an invisible illness is humbling because in order to function more easily, you have to swallow your pride, accept your limitations and be willing to state your needs to others. No "pretending" I'm like everyone else. I'm not, no matter how good I look on the outside.

Is it possible you are embarrassed for feeling the need to lay down? Why are you hiding your problem? Are you afraid someone will like you less because you are not feeling well? Imagine this.......a friend of yours just had back surgery, and you know it. After standing, or eating for a few minutes, your friend says, "I'm going to have to lay down for a moment. My back is acting up." Would you get mad? Would you be upset? Or would you be glad your friend feels comfortable enough with her disability and with you that she says something instead of hiding it? As difficult as this is, having a chronic problem is humbling. It is important to accept what is wrong without feeling the need for self-pity or pity from others. It is the way it is. You have not chosen your predicament in order to be "more difficult". I've decided after having this for years, to become more comfortable with my limitations. And that means, I can say out loud to someone, "I need to lay down for a minute," or "I can't stand up this long," or, "I'll need to bow out of the get-together." It's taken a while to adjust to stating my needs without worrying about the repercussions to others. Would it be helpful or loving to them if you said nothing, and then fainted, scaring them silly? You're going through difficulties on top of dealing with your medical condition. Be kind to yourself. Respect your need for assistance. Be honest with others when you are with them if you are having problems. Wouldn't you expect the same from them? Really, now wouldn't you expect others to be honest with you? Take care. We are here for you.

Thanks, Maxine. I was getting confused with the 'S' added to Dr. Grubb's name.

Notgivinup or anyone, We are talking about Bev who(?) at what facility? Thanks. I do not know who you are talking about and what facility they work at?

Notgivinup, Did you see Dr. Blair Grubb at the Toledo Medical Center? Thanks.

I've taken it. It was a few years back. It could cause stomach upsets, but I had no problem with it and would take it again.

I'm no doctor but my opinion is: Have you had other possibilities checked, things that could be causing your discomfort, such as blood work? I'm thinking specifically of iron deficiency or possibly other vitamin deficiencies? Have you had your thyroid levels checked? Have you been tested for Lyme? I'm saying that you may or may not have POTS, but before you pin that label on yourself, you have to be sure to rule out other possibilities. For people with POTS, there are indeed different levels of functioning which can change from hour to hour.

Daisy, Word of caution, since I do not know exactly which UTI test kit the stores currently sell. I once got my own test kit, and with the interstitial cystitis, I usually come out positive on the white blood cell count, but negative on the nitrites. In the test I took, since I was positive in one (the white blood cells) and negative in the other, I still wasn't sure I had a UTI until I was cultured by a doctor. Apparently, for me, I have to come out positive in the white blood cells, and positive in the nitrites to show an infection on those "home" tests. Anyway, the home tests are not accurate for me.

I'm trying real hard to remember, but...... A while ago, pre-POTS, my gastroenterologist ran a test to see how quickly "something" went from my stomach through to my bowels. I cannot remember much, but the fact is, at that time, I was moving food through QUICKLY. I do not know if I was on the PPI at the time. I also have no idea whether this test would give the same result NOW that I have POTS? I will discuss motility issues and the ongoing ingestion of a PPI with my doctor. Because of my taking a PPI, I know for a fact that I "pick up" stomach bugs more easily because I do not have the acid level to kill them off. I'm pretty sure the doctor "knows" I do have reflux because he has been down my esophagus a few times (I've lost track of how many times he's looked.), unless he's just says I have acid reflux because saw my inflammed esophagus and deduced it? At this point, if I stop PPI, I go into reverse, and the acid really hurts me. I had to stop them once for something and it was not easy. I do take raniditine 150mg/at night. It tends to depress me, as does Pepcid, so I am not an easy case by any means. I also have a moderate hiatal hernia. At this point, I would love to have a gastro doctor who specialized in motility issues. I don't think we have one in Baltimore?!

Sue, Your answer can be found in this thread: http://dinet.ipbhost.com/index.php?showtop...hl=blood+volume Also, my POTS doctor, at my request, submitted a request for a blood volume study. I did mine at Washington Hospital Center in D.C. It is done by the nuclear medicine department. Relatively easy to have this set up. It's interesting to know that I am usually on "the low" side, as opposed to being "normal". My results were: mildly hypovolemic. Thank you for the "tea" idea. I cannot tolerate coffee for sure.

Julie, I appreciate your answer. Yes, I had been taking Probiotic Acidophilus (bought at GNC) 2X/day for a very long time and I was doing "okay". I switched about 1 1/2 weeks ago to Align 1X/day, and have been constipated and had hard stools since. I do not know what I'll do. I asked about the diet because....... whenever I get on my "healthy food" kick (like right now), and include whole grain pastas, raw veggies, or raw salad, I seem to have problems...more than my usual. I get very gassy and seem to have problems digesting. Also, I cannot take in much milk products and no liquid milk at all. Milk products give me a stomach ache. Interesting, almost any fat makes my stomach go into more spasms, including the "healthy" olive oil or canola oil which I've been using on my lunch salads lately. So, the diet you mentioned seems to exactly fit what I have already found out on my own. My only problem now is, I've been on 3 fibercons/day to "help" my bowels, but I am beginning to think this is not the correct thing to do with motility problems. Also, I may have to go back to my original probiotics, or the Culturelle like you suggest. The Align is creating new problems for me. How do people who eat rather blandly, without the "healthy fiber", get their guts to "move"? I'd really love to know. I was always told that the additional fiber would "help" my bowel problems. If the bowel has problems with motility, I am assuming the additional fiber could get things "bottled up"? Thanks in advance. P.S. Any good ideas for lunches for people with motility problem, the easier to prepare the better? TIA

Interesting. Was your doctor %100 sure you had a UTI? Did he find out for sure you had bacteria by culturing your urine? Did you have symptoms? My PCP thought I had a UTI because he saw white blood cells and red blood cells in my urine and suspected it. I knew better (because of my interstitial cystitis), and waited for my urine culture results before starting antibiotics. I was right. I did not have a UTI. I'm asking because I suspect in me, my "reaction" to certain foods and allergens inflames my bladder. It is called Interstitial Cystitis. It feels like a UTI, but there are no bacteria involved. Maybe it has to do with my bodies' reaction? In any event, I am on raniditine (a histamine blocker) daily before bed, and hydroxyzine HCL (an antihistamine that also helps interstitial cystitis). The combo keeps me feeling good. It's possible you do have some allergy reaction going on which exacerbates POTS symptoms? BTW, antibiotics can make the bladder feel better even if you don't have a UTI because they supposedly have anti-inflammatory properties. I learned this from my IC (interstitial cystitis) forum. I hope you are closer to good health because of your awareness. Keep us posted.

I may have some gut dysmotility, but not severe enough to cause serious problems:it's a nuisance. I have small intestine bacterial overgrowth which kind of points me in the direction of dysmotility as a cause. So, for the people who know, I was curious as to the diet that can be followed for this? Or, a link please. Thanks in advance.

AJW4055, My experience has been that I appeared "interesting" to the medical student who accompanied my PCP during an office visit. He asked some questions, and he took my pulse in different positions. Fascinating. For the first introductory office visit, the doctor alloted more time to get to know me. On subsequent visits, the time spent with me diminished, and the interest as well. I am glad to hear about a doctor's interest in your case. Let us know how subsequent visits are. I hope one of these interested doctors learns as much as possible about this disabling condition.

One week after switching from Probiotic acidophilus (purchased at General Nutrition Center) 2X/day, to Align from Costco 1X/day, my bowels are now constipated. I've done an experiment and worsened my gut activity. I really need to do something at this point, and I'll probably keep taking the Align, but also go back to my 2 Probiotic Acidophilus a day and hope I haven't permanently destroyed my necessary gut flora. As for POTS improvement, it's hard to tell. I do not have objective data as to anything improving or worsening (except for the constipation....ugh!)

Maggie, I have a Polar heartrate monitor. Once when I thought the battery in the transmitter died, there was no way I could replace it, and I thought I would have to send it back to them with $50 to get it replaced? Well, I only spent $90 on the watch and was not about to spend $50 to replace a battery?! Luckily, I got it to work again without sending it in. I hope I'm wrong about the $50, because I was about to forget about it and get a Timex heart monitor which would allow me to replace the battery. The polar does not allow me to open it up at all and replace a battery.

Hi, My opinion is that "feeling comfortable" around someone you are with is extremely important as well as being respected and loved. Your post made me think you are not comfortable, nor are you being yourself because you feel you must do and say things in order to make your friend comfortable. By definition, that cannot last. First off, try to be accepting and comfortable with yourself, meaning accepting of your limitations. This is important. Then.... Be yourself. That is the only way to be. It would not be fair to be one way at the beginning of a relationship, and then turn into who you really are. I don't know if this will make you feel better or not, but my niece was a thalidimide baby, born in Thailand, adopted by my sister-in-law. My niece basically has no arms or legs, just portions of each. She has a loving wonderful husband whom she met in high school, and she just had her first baby with him. Love is blind. In order for someone to love you, and not just who they think you are, you must be totally comfortable and accepting of yourself. It may be possible that you still have to become more comfortable with who you are and your capabilities before allowing someone to get close to you. I don't really know you. This is just my opinion.

Erik, I really did not understand your post. But when I look at the list of drugs in relation to CYP2D6, I have trouble taking those drugs. I don't know really what it means? Does a CYP2D6 gene aid in metabolizing a drug, and I'm deficient in that gene?!

Oh yes, I forgot, steep ascents and descents and steep turns left me unable to see until "my blood flow" equilibrated. I made up that terminology. LOL I mean, the vertigo passed rather quickly. I did not stay weirded out. Also, depending on the cabin pressure, I think, I could get rather groggy (sleepy) from the lack of oxygen. I did not care about that. As for First Class seats, no they were not given to me cheaper because of medical necessity. I had to pay for the upgrade when available, and if I asked for it within 24 hours of takeoff, it was the cheapest that you could get a First Class seat. I paid in the hundreds extra (above and beyond the cabin price) when I did it this way. It was worth it for me.

As someone who just did her first trans-Atlantic flight post POTS, and a second flight across the US, my conclusion is that traveling is stressful for sure. First trip across the Atlantic, was non-stop. Across the US, by definition, I needed to change planes to get where I was going. On both trips, I spoke to the airlines ahead of time and tried to get the seating I wanted. I impressed upon the airlines the severity of my condition and that my circulation does not work properly. I also have doctors' notes about needing bulkhead or First Class seating. Also, for me personally, if I did not get the First class seating I did (it's called an upgrade and is done at the gate or within 24 hours of departure), I do not know how sick I would have been. On the trans-Atlantic flight going, I had bulkhead seating, thank goodness, but started feeling extremely ill about 3 hours into a 5+ hour flight. I wanted (needed) to recline and could not lay in the aisle, obviously. So, I did the next best thing. I was on an aisle seat at the bulkhead, and I slouched down as far as I could in the seat and raised my legs straight up onto the bulkhead. It was a necessity for me at that point or my oxygen deprivation headache would have worsened. Returning, they had a first class upgrade available and I took it. What a difference. Those seats reclined. I've since found out that the cross-country first class seats do not usually recline, only the trans-Atlantic first class seats. So, for the first class seats across the country, the seat I want (need) is the very first seat in the plane against the window. If I recline the seat the most it will go, and lift my legs up against the corner (so as not to disturb the person next to me), then the trip is tolerable. On the smaller short flight I had bulkhead seating on the aisle so I could stretch out my legs. Well, I'm glad you're back. It takes some getting used to for sure. You can check your actual seating and accomodations on the internet ahead of time to see what your airplane will have.