futurehope

Anyone have an answer to the above? I always thought I was imagining symptoms, or I couldn't understand them, so I ignored them, until.....I noticed other POTsy's suffer the above symptoms like I do. Anyone ask a doctor why this happens to us? P.S. Sometimes I feel like a real old lady with all these weird symptoms.

I haven't been exercising steadily for a month or more now due to plantar's warts, and excessive snow in my area. I felt great. No exercise, I was fine. I went to the mall yesterday to do my usual 4 laps and I feel dead today. In my case, I'm believing the aforementioned article. Exercise seems to be detrimental for me, except....... I am going to try the graded approach - 1 minute more/week and see where it gets me. For years I've noticed that I do not get the benefit from exercising that others do. My natural inclination has been "to push". Apparently, in my case, my philosophy of pushing has been detrimental. I'm so stubborn that this has been difficult for me to accept.

Come to think of it, I've had a puffy side of the face, and swollen salivary gland for years before the POTS surfaced. Im always fighting fatigue, like a CFIDS patient. Maybe I have Sjogren's? My neuro will be testing me on my next visit for lupus. I'll ask for a test(s) for Sjogren's as well.

No, lying down does not help all of my symptoms. My most favorite position is reclining. It causes the least problems. Since I normally only lie down in order to sleep, I associate "lying down" with all the difficulties I have to face trying to wake up. I feel terrible in the morning or after a nap. My body has difficulty adjusting from the sleep to the wake state. It takes a lot of will power for me to get out of bed when I feel so poorly, but the only way around that "dead" feeling, is going through it. My mornings or after nap times involve readjusting. Sometimes, the longer I sleep (as I've posted elsewhere), the worse I feel upon awakening. I've forgotten, at this point, what it feels like to wake up and feel normal. I also look pale and sickly after waking up, like my circulation was faulty. I'm basically a mess, but hey....this is my new normal.

Mack's Mom, After being diagnosed with SIBO, and being given a course of antibiotics to take for it, I questioned whether I should be taking something daily as a preventative? I do not consider my gastro doc an expert in gut dysmotility by any means. I can't remember anymore what form or dose of the E that I took? I'd have to call the pharmacy and ask. Whatever it was, it was a very small amount.

I had the same reaction to erythromycin that you did. It made me feel very sick. Let me know what you decide.

When we say the word "hose" in the U.S., I'm assuming the person is referring to full-length waist-to-toe stockings. Maybe people in the U.K. call waist-to-toe hosiery tights, and the thigh-high or knee- highs you refer to as stockings? Correct me if I'm wrong.

Dadof2, Thanks for your update. Since your doctor does not want the publicity, how did YOU find out about him/her? TIA P.S. I contacted the company and they will have a representative call me back with the names of the doctors in my area who have the device. P.P.S. I spoke to a representative in my area and got the names of two physicians who perform the test. She also said that since I am in Baltimore, they would come to to my neurologist's office and perform the test if he so desired. They would do this since they are based in Philadelphia. The cost is covered by insurance, but did not sound too high (in the $100's). When I asked her why it was two internal med doctors who had this equipment in Baltimore (since internal med docs know less about the ANS than my neuro who is very knowledgeable), she had no good answer. I then also said, what do the doctors DO with this information? My neuro has worked as much as he can trying different things, so I could not understand how they would know what do do? No good answer. My opinion: This test does give valid info as to the workings of your ANS, or the malfunctioning thereof. It seems less expensive than a tilt table test. As to what to do with the results?????....................I don't think there are any easy answers and that is why the doctor of the OP does not want to advertise. I believe he is doing his best but cannot state emphatically that he "knows what to do", so he prefers to stay mum for now. This is my opinion only, and I may be way off base. But I know for a fact that my neuro is very knowledgeable and if he knew what to do, he would do it.

I didn't feel like getting out of bed this morning, which is true for me every morning. The difference is, this was one of my "off" days, with nothing important planned, so I fell asleep for another hour for a total of 10 hours. I don't think I'll be doing this again. The extra hour has left me "feeling like low pulse pressure" (icky) all day. I do not want to feel worse than normal, and this is no fun. Well, tomorrow is another day. I will force myself out of bed after 9 hours, even though I feel so tired every morning. The extra hour has ruined my day. Who would have thought extra rest would make me feel worse? I'm so sensitive to environmental changes.

My endocrinologist gave me an insulin tolerance test, but I suspect this is so because he has a interest in POTS patients. IOW, this test is not routine, and POTS symptoms do not point to getting this test. In this test, they abnormally lower your blood sugar, and watch the adrenal output as a result of this stressor. My adrenals put out cortisol, but at a subpar rate. The test needs to be done at a medical facility by knowledgeable people who are at the ready to treat abnormally low blood sugar. I was given small doses of cortisol for a few months because of my results on the above test, and because it had helped other POTS people. I kept getting fatter, and felt no better, so I stopped taking the hormone. I do still have the cortisol in the house and maybe on rare occasions I'll take a bit if I've been ill with something and I'm noticing low blood pressures and extreme fatigue, but this is rare and I will not take a hormone for nothing. In my particular case, when I had been taking a bit of cortisol daily, I was also hypothyroid at the time (without knowing it). I am no longer hypothyroid, so maybe trying the cotisol now would be beneficial........If an external course of adrenal hormone is given, they need to be confident of your thyroid output, as they go hand in hand. Since my thyroid output had been low and I did not know it, the supplemental adrenal hormone made me fatter. Anyhow, I do not think most doctors feel confident in giving hormones unless there is a test done to show a need. Otherwise, you are increasing chances of other unnecesssary side effects because of the potency of the drug.

I was a patient that tested okay when given the cosyntropin stimulation test for adrenals, but "sub par" for an insulin tolerance test. Based on the subpar performance of my adrenals to forced low blood sugar, I was given a bit of adrenal hormone to take. I took it for about 3 months and gained weight and did not feel any better, as much as I wanted this to help me. I think it's easy to hope for that magic thing that will take the bite out of POTS, but, realistically, I feel that improvement for me comes from several small and varied things that I've done after reading this forum for years. There are exceptions to what I said, because in some cases, there can be a primary cause for the POTS. This is something I am always staying "tuned in" to for myself. But, for my daily adjustments to this condition, as I said, there are varied and many small things that taken together improve me, even though my primary cause has proven elusive. Welcome, Dazed&confused. The first thing to expect with this new found knowledge is the unexpected. Symptoms can fluctuate throughout one day and over different days. As time goes on, you will become more knowledgeable about the idiosyncrasies of your condition. I suggest that you begin (after obvious abnormalities have been ruled out as cause), by realizing that this condition is relatively unknown with many possibilities for things that may improve you. Have you given yourself the "poor man's" tilt table test by measuring your blood pressure and heartrate supine, and then after 5 minutes of standing still? You'll need a blood pressure cuff to do this. In your profession, that should be easy to get a hold of. Then you can search for a neurologist or a cardiologist that understands this condition. Once you arrange an office visit, you can show the doctor your "stats", both sitting and standing, so they can see the abnormal response you have to being vertical. Doctors like when they can see some proof of an abnormality that is measurable. Let us know what you decide to do.

erikainorlando, I'm like you, with the exception of when I've done more than usual, or I'm sick.

It's never easy to wait on a diagnosis. Maybe you will finally be able to get some answers and help with your problems. Please keep us posted. BTW, how does POTS fit in with vasculitis?

This may sound trite and simple, but what I do is.......I don't think. I live in the moment. Works for me.

Mack's Mom, I am on my above mentioned meds because they are all doing something useful. How do I know that? Because if I try to stop any of them, my body will tell me somehow, whether it be my bladder acting up, or my esophagus hurting. It took years to get to this regimen, but I plan on staying on it. If my allergies (or mast cells), are really acting up, I am allowed to take more antihistamines, as you said, during the day, though I only need to do that on rare occasions. My desire has always been to stabilize myself and to prevent more serious problems from arising. So far, so good. I currently have been working on fixing and maintaining my "varicose vein" problem in my legs, as I believe that has contributed to my orthostatic intolerance issues by allowing more pooling in the legs, and less venous return to the heart. This varicose vein problem is an ongoing lifelong issue. Once they are "fixed" via surgery and injections, they are rechecked every year via a venous doppler to see if anymore veins have begun refluxing.

Mack's Mom, FYI I am on Nexium before dinner (it works best for me then) Ranitidine 150 mg before bed (it works best for me then) (Tried Singulair for a while, but contributed towards insomnia, so I stopped taking it.) Hydroyzine HCL 50 mg before bed Plus, I take 100mg of CoQ10/day. So, all in all, I'm on several of the meds you are thinking of already. And.......I am able to take allergy desensitization injections, every two weeks. (And I use an antihistamine nasal spray daily, and a steroid spray as needed.) So, what could Dr. Castells do for me that I haven't thought of already?

Hey, peeps, thanks for the answers. I doubt that I have ever been anywhere near having anaphylaxis or generalized itching, so if my symptoms are due to badly behaving mast cells, then I have a "different variety" of mast cell disorder. It's possible all my inflamed areas are due to badly behaving mast cells, but that the malfunction is not understood. I would hate to waste Dr. Castells time because I'm "fishing" for a problem. But, I am very interested, Bella Mia, in how your visit turns out.

Mack's Mom, Did you see Dr. Castells to be diagnosed? How can I contact him? Have you ever had full-blown anaphylaxis? TIA

Dani, You are probably referring to low-dose naltrexone.

You may have a plugged duct, and the recommendation I've received from a head/neck surgeon is to eat the stuff that is sour to get the stuff through. Having this does not mean both sides need to be affected. A head and neck surgeon or an oral surgeon (who does tooth implants), is who to see. P.S. The only thing that really helped me get rid of this parotid gland problem was an anitbiotic named Ceftin 500mg 2X/day for 2 weeks. It was one of the more difficult things to get rid of, as "regular" doctors (not specialists), did not know the right antibiotic, nor the correct amount to prescribe for the most effectiveness. You need a knowledgeable doctor to help with this.

Just yesterday, my dermatologist was suspecting I have Roseacea, which basically is the skin's reaction to whatever it wants to react to. It shows reddening on the cheeks, and stuff that looks like acne pimples. Normally, people do not react to these things. I'm noticing that since POTS, my nervous system overreacts to anything, be it sight, sound, changes. My tolerance to change has decreased. My bladder lining overreacts to different foods, making it susceptible to feeling inflammed. This is called interstitial cystitis. My esophagus and stomach lining overreact to different foods, making them susceptible to feeling inflammed. It's called GERD. My intestines, overreact to every day life. I could write a book about my escapades with my stomach and intestines. In short, I display a marked inability to tolerate many "normal" everyday occurrences. There must be a connection to all this, like Lyme's Disease (which I do not think I have because I have never had pain issues), or mast cell activation disorder, or lupus, or ????? Can anyone else shed some light on this overreactivity? Thanks. Obviously, I'm missing something in understanding all this. I will bring this up with my neuro in a few weeks.

MomtoGuiliana, Yes, we have a GPS, except only my husband knows how to use it at this time. Maybe it's time I learned?! Also, one cannot assume that they work everywhere. I'll let you know what I decide.

Lina, I had thought the exact same thing, about a spa. I cannot see much there on the internet, and am freaking out about "finding my way" in places I am unfamiliar with. I freaked myself out last night, was a basket case and could barely sleep. All I kept thinking about was an 11 mile ride from the slopes to the Inn on roads I'm unfamiliar with, in the mountains in winter, with a cell phone that might not work in the area. (Long story, short, A friend of mine's two kids and grandkids got lost on a mountain at night because they were relying on their GPS, which didn't work where they were, and their cell phones, which were losing juice. They got out okay, but spent a harrowing 2 hours totally lost.) So, as of right now, I have no idea how I could manage, and decided going is too risky. But....I could change my mind. The thing is, it is TOTALLY unbelievable how much time I spend thinking ahead about things since POTS. Obviously, this illness leaves me with less options then if I were able-bodied, so I MUST think ahead. I keep reminding myself of how foolish these gyrations are in the face of poor people who are starving. That is how I keep myself sane and how I alleviate the stress and uncertainty of decisions I have to make because of POTS. Thank you DINET for having this forum that I can post on, populated with caring people who "get it".

I'll be in the Berkshire mountains, of which I know nothing, at the moment. Yes, higher elevations tend to wear me out. I've already informed my husband that he cannot rely on me driving everyone the 11 mile trip to the mountain, and then find my way back to the inn, and then drive back out there and get them. It's the middle of nowhere for me, and too dangerous. I might get lost and have no clue. Yes, members of this family, no matter what the age, tend to be outdoorsy, hikers, bikers, "lots of stamina-type" of people, and I certainly have become the "dead weight". It's supposed to be really pretty in the mountains, but I'll probably stay back at the inn, so as not to get lost, and to be able to rest up from the trip there and to be able to enjoy the dinner (now that's another story). I really do not want to get stuck at the ski area waiting for everyone because the elevation may get to me, not to mention all the sitting. It definitely would have been easier to stay home, but I never know. I might enjoy the scenery and "getaway" as Cat_Lady said. It's for my husband, not for me.

Lauralulu, Thanks for your kind words. MomtoGuiliana, Yes he used to enjoy skiing, before he knew me, and yes, he will enjoy it. I suppose he will feel guilty if I'm not participating in his birthday event, so he prefers my presence. I understand his perspective, and I'm going in order to make him happy. As for me, I'm investigating the surrounding area to see if there is anything I can do, and, aside from outdoorsy type things (skiing, hiking), it doesn't look too promising. Like I said, I do want him to be happy, and for me to get over my selfish feelings. There are worse things in the world than feeling bad that I have to share in joy with people having a good time. It's a learning experience for me. Usually, I do not care and I find something else to do, but this particular event seemed harsher and more difficult than usual.