lynnie22

Gjensen, just to have a couple of possible probiotics, do you remember which one you took or take? Thanks. Katie, since I don't know if that is what I have yet, it's hard to know. But I have been sorely lacking in fiber for a long time, except for what the gastro has added to my diet. Meaning I think I am pretty deficient in fiber, except for the bran he added. I'm beginning to think becoming a fruitarian for a short time might be the answer. But if I ever get in touch with the gastro (we have been trying each other all week without success), I will get that test. Thanks again Jackie. Actually I wonder if what is going on is severe inflammation of my intestinal walls. But how do you tell.

Thanks so much for answering! Sometimes with all of this, I feel very alone. Yes, I have been taking culturelle, but as you say, Jackie, it isn't helping. What is florastor? A friend of mine who does colonics (I had one, unfortunately that too did very little to help) suggested Prescript Assist, a 27 strain probiotic, heavy duty. Yes, the gastric emptying study sounds like a good idea. I've been trying to reach this other Gastro person who might be amenable to that. In the meantime, besides probiotics, what in the world can I do? I'm really sick of taking all this other stuff which doesn't even work that well, and I think it may hurt. Gjensen, may I ask, what do you credit for your improvement?

Until August, I had my digestive problems, but since a colonoscopy in August, it's like my digestive process has shut down. The timing may be coincidental, I don't know. It's as if nothing in my intestinal tract is moving properly-- or at all -- without lots of aids and even then, it's totally not normal. I don't want to become dependent upon laxatives. I honestly don't know what has happened. My internist suggested that this could be pots related and an autonomic dysfunction although my gastroenterologist thinks that's ridiculous and so I'm supposed to take bran and colace and miralax..... I've started taking a probiotic which hasn't helped yet....No matter what I eat, if I don't take something, I become impacted. Any suggestions on what to do or what could be going on?? Thanks a lot. Lynnie

Yes, it is low. My bp at times can drop to 72/50. Then I feel really lousy, dizzy, faint, foggy. Lots of fluids, lying down, of course salt, can really help. Everyone is different on how they react to different pressures. Sometimes I feel lousy when it's 85, sometimes I'm okay. Does position affect it at all? When I stand up when it's low, I feel the worst. That's when lying down really helps. I agree that a medication adjustment might be in order.

I also want to wish you well, Becca. The only thought I have is about your latest gastric problems -- maybe (it's been that way with me) the latest nausea is related to all the teeth problems. I understand the nervousness....it sounds like they are going to be taking good care of you there and watch everything carefully. When is the surgery?

Thank you, E. Good luck on your dexa scan. I know it's a chance on which one will do the least harm while increasing your bone density. I also have gastro issues, although the atelvia is supposed to be less toxic in that way. Who knows? Did the IV or oral meds affect your heart rate? That's one thing I'm truly concerned about. Thanks for letting me know about the necrosis possibility -- with Prolia? My hip is on the border of needing a hip replacement in any case and my osteoporosis is worst at the femur.

Hi E, Did you take any of the biophosphates before? I've been avoiding taking meds for years, but the bone loss has come to a point that I'm forced to. I have the kind of pots with very labile bp and am worried about either affecting my bp. It sounds like Prolia has not affected any of your POTS symptoms? By the way, happy birthday.

I am forced to go on either atelvia or prolea for osteoporosis. With all the sensitivities and problems with pots, I was wondering if anyone knew which was the lesser of the two evils, in their experience. I don't know if anyone here has osteoporosis--I am one of the older members, unfortunately. Thanks for your help. Lynnie

Hi Arizona Girl, Good suggestions. I actually have an appt with the doctor who did the surgery on Wednesday. Didn't realize I made it a month ago. I'm going to go and ask him to run tests. I did get a quick report, not much on it though. Yes, exactly. My current gastro was ego-ly wounded, he wanted to do the surgery. At the time, I thought it needed a specialist. It isn't easy finding a good and new gastro, believe it or not. Arizona Girl, your name gives away your locale which ain't NYC. Yes I am severely bloated today because nothing is going out and because I had a huge dinner, BD, but feeling ill. My friend does colonics and recommended some stuff for me to take, mainly magnesium and a colonic. Never had, it may be the way to go, but I am seeing both my old gastro and the doc who performed the surgery this week, so hopefully there are some answers or at least questions to figure this out.

Thanks a lot,Arizona Girl. Yes I continue to suffer although there is no more pain. Thanks about the cherry juice! I have not at all consulted with the surgeon who did the colonoscopy, I saw him just to do the colonoscopy because it was supposed to be a big deal, but it turned out different. I returned to my regular gastroenterologist, he won't talk about the procedure because I had it done by this other doctor, advised by all. Anyway, all he wants me to do is take more preps, won't consider motility issues as the problem.....anyway it is frustrating. I contacted a friend of mine who is into alternative stuff, she said to take a lot of magnesium citrate, no fiber, get colonics, get a strong probiotic. I honestly don't know how serious this is. I am taking colace which seems to help a little, and magnesium which seems to help a little, but nothing is helping that much. Sounds like you have had some positive experiences in the ER, I dread that but maybe.

I had many symptoms on and off over many years. However, no one knew what was wrong with me. I had never heard of pots. Nor had any of my doctors. After a few years of racing heart beat when walking and having trouble breathing sending me over and over again to my pulmonologist and cardiologist, my pulmonologist suggested I go to Mayo, suspecting there may be something neurological going on. That's where I got diagnosed four years ago.

I know that pots can affect our digestive system. Since my colonoscopy one month ago, my colon seems to have stopped working for the most part. No matter what I take, I am pretty blocked. Magnesium and fiber used to work before this, but not now. I took a full bottle of citrate of magnesia as per gastro's advise, and it worked only a little. Since taking it, I'm really blocked. I believe it's a motility issue but not sure. My gastro knows nothing about pots, and seems uninterested in investigation -- only interested in more laxatives which I'm really against. I believe that can only make things worse in the long run. Any suggestions? Anyone encounter this problem? It is really frustrating, let alone painful.

Hi Arizona Girl, No my pots symptoms are not being managed at all actually. I haven't found a doctor in NYC who can do anything for me, and my visit to Mayo yielded one conclusion: exercise which I am doing. It is interesting that you mentioned thyroid and neuropathy as NO DOCTOR has ever referred to these as issues re pots. They do not know the cause but never made that association. Biophosphonates have serious side effects for some -- flu symptoms for months, not sure how they affect bp or hr. Atelvia is supposed to stop bone growth and loss, as they all do. Kind of puts a halt on whatever in our bodies controls bone functioning. I think these drugs are pretty awful, but the loss I am having is very fast -- which leads me to wonder what else is going on. I would be interested in hearing more about pots and thyroid.

I'm about to embark, after much delay, on a treatment for osteoporosis which is quite severe -- one of the biophosphonates called Atelvia. Has anyone here had any experience (positive or negative) with treatments for osteoporosis? And its interaction with pots symptoms? Would appreciate any feedback on this. Thanks!!

Hi Katie, Yes the fluids helped,even though i wasn't dehydrated (by then I think). Still recovering though from the anesthesia and the general procedure. I think anything can put us back a lot! Was the PT helping your migraines? Are they back to where they are? How is your neck doing? I won't take up this colonoscopy space with all of this. But I do think that the dehydration puts us seriously back a few steps.

What a good idea, Katie about the Urgent Care place! They took me in two mimutes, turns out I'm not dehydrated but they gave me fluids anyway, had all the equipment there for blood results, etc. I think it was the anesthesia according to them drying me out, etc., etc.

The urgent care place will be open again tomorrow. Closes at 3 pm. I will stop by tomorrow and check it out. Thanks. How are you doing?

Thanks Katie. Well my skin doesn't snap back so quickly but it could be worse. I'm sure drinking up a storm and feel a little better. It really is hard to tell the difference between pots dizzies and dehydration. I'm just hoping that three days of fluids post colonoscopy is getting my body back to the normal of pots. I loathe the ER here. I don't know what's it like there. Here it's hours and hours before anyone treats you unless it is truly an emergency which I will not consider this. So I'm hoping things are better tomorrow. If I wake up in the same state of dizzies and dryness and low bp in the AM, maybe I will go.

It is hard to separate out dehydration symptoms from worsening pots symptoms, although I imagine they are interconnected. I had my colonoscopy on Wednesday. prepped with Movieprep, arrived with a splitting headache, dizzy, was given two IV fluid containers, but waited hours for the procedure. Not able to drink again until about 4 pm. That night I had a severe bout of diarrhea. Not since. Today, Saturday, three days later, I feel really lousy. My bp has been down yesterday and today (it is usually normal during the day, not now), my hr is up, and today I am dizzy, dry mouthed, and very tired. I am not sure whether I should be concerned that I am very dehydrated or it is the pots from slight dehydration. I am drinking plenty of fluid and gatorade. Any suggestions? How do you know when dehydration is dangerous enough to go to an ER? Is drinking fluids enough? Why three days later? Thanks for your help!! Lynnie

I am very concerned about the prep! Because my bp is very labile, it can dip to 70/45 up to 180/120....when it's high, I take a betablocker, when it's low I need to stay very well hydrated....so i'm nervous. The prep they are giving me -- I haven't thought ahead -- is moviprep, a very high sodium prep. not good for either GERD or HBP or I'm sure POTS....The surgeon, Katie is IMPOSSIBLE to get in touch with directly. NEVER talks to anyone. He's a technician--and right now, because the polyp is so large and complicated, I need a good technician, but I sure need a prep that won't affect me too adversely. In addition, i am currently really blocked up, another complication. Helen, thanks for your story-- a wonderful nurse goes a long way. I don't know how the sedation will affect me as it will be much longer than usual. I have just tomorrow AM to somehow get in touch with the surgeon's nurse and have them give me another prep but one that is thorough without causing terrible dehydration or bp problems. Any advise is welcome on this. Katie, I am trying to keep pretty hydrated but busy taking other preps that haven't worked....what a mess....for the blockage.

I am having a colonoscopy in three days. I had one a year ago and a very large polyp was not removed (the doctor neglected to) so another surgeon is going in for what may be a rather lengthy colonoscopy. My POTS symptoms are worse from a year ago, so by evening my bp is very low (in the 70 s) ,my HR very high (120-130 standing) and I feel faint. Any suggestions for enduring the prep with these issues? Any advice for the anesthesia? Thanks a lot!! Lynnie

So hopeful news.....The second opinion neurosurgeon at Columbia looked at the films from recently and one I had from eight years ago -- he seemed to know how to read the films well -- he said no reason to worry. He said that the tumor or whatever it is, questions whether it's really a tumor either, has not changed in all these years and definitely he said is not the cause of any of my symptoms. It was very encouraging. He does not know what it is either, but as long as it remains the same, I guess it doesn't matter. This doctor at least went over the films with me, showing me everything. I will still have another MRI just to make sure and then will hopefully move on to dealing with the pots or not pots syndrome that no one knows what to do about. Thanks for the good wishes! I will keep you informed about the next MRI, hoping this surgeon is right. No even if I still don't have an answer from the doctors of what is wrong, and how to help it, I at least am feeling encouraged....

So Sue for you, it sounds like watch and see. Did he suggest doing MRIs to get a better look at the shadows? Good question though, because yes, that's pretty much where this is. For many years since I had my thyroid removed, my thyroid numbers on synthroid were always abnormal, as if the synthroid was not being absorbed properly. Now ironically that seems to be normal. My adrenaline, on standing, shoots up, but that's consistent with pots or whatever I have. I'm not sure what vaopressin is. I do know the TSH is related to the pituitary in how much thryoid hormone it perceives one has. I do need to have that battery of blood tests as soon as I can.

Thanks for the feedback. I am VERY frustrated.....The autonomic dysfunction which may or may not be related to the may or may not be a tumor has never been helped. But maybe, as arizona girl suggests, there could be a relationship. So this is the story: I live in New York City, I have an appointment tomorrow with a second opinion neurosurgeon who I don't know but is with a good hospital and I'm bringing my films and the conflicting MRI reports. So Sue, yes, it is near the pituitary, leaning on the carotid artery. I could quote the terminology used in the report but I don't understand it. It is SOMETHING -- the first place it was seen it was called a tumor, but then the second radiology place said it looks like something else -- like some sort of defective growth of my pituitary that has always been there. No one knows really what it is, I will be having another scan soon, but am getting a second opinion in the meantime. You would think that radiologists are the experts in deciphering these MRIs but who knows. I had a couple of pituitary blood tests that were normal, but have not gotten to my endocrinologist for the slew of blood tests he always takes. He is good but always takes 13 tubes of blood and I am scheduled for removal of a huge polyp in three weeks in my intestines so don't want to be drained of blood. Looney mom, that is so frustrating about the neurologist, although I can relate. None of the neuros in NYC except possibly for one have had a clue what to do or really want to do anything. Arizona Girl, I have periodic high blood pressure too which is why the last neurologist said she didn't want to go near me. I have had a cardiac workup, but am seeing the cardiologist again..... The tumor does trump the rest of the problems though and I guess until I have the results of the next MRI to see if the tumor or whatever is stable, I will not rest well.

Recently I was diagnosed with a brain tumor. Well at first. Now they are not sure if it's a tumor or a growth or what. There's a dispute over what they are looking at and it's getting frustrating, let alone scary. I had the MRI because of my terrible vision and headaches. Well, maybe suggested one opthamologist it could be related to the POTS. But the most recent POTS neurologist that I went to at home suggested that I should really be under a cardiologist's care because it's not, in her opinion actually pots but OI. What is wrong with this picture? I was diagnosed with POTS four years ago at Mayo. I returned to Mayo a few months ago because of worsening symptoms although their main suggestion was exercise which I am doing. So far no gains with my symptoms, but the tumor or whatever it is may or may not be contributing to some of the symptoms. In my experience now, i have learned that the word 'syndrome' puts you into a category that most doctors do not know how to handle. I have also learned that reading an MRI is more of an art than a science, and I only hope that the next one they do very soon can actually be measured so I know how to proceed. My vision remains a complete mystery, the tumor, a question, and pots, well, without a doctor or further treatment. How do we proceed when the medical community is so confused? Thanks. Lynnie