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I started out on that BB, and couldn't tolerate it. It was very effective in bringing down my heart rate, but I am very hypotensive, and ended up spending several days in the ER to stabilize my BP. So I am currently taking a teeny-tiny dose of atenelol, but having very mixed results there, too. I don't recall getting worse nausea with meteprolol, but I am always nauseous, so that doesn't mean it didn't, I just can't tell if it made it worse! Personally, I would be unwilling to take anything that made me vomit, but mainly because I have to get IV fluids as it is, vomiting is not an acceptable side effect for me. You might want to give it the weekend, but if things don't improve rapidly I would definitely contact your doctor first thing monday! Sandy

Having flown several times with POTS, I can simply add to the rest the importance of planning, and hydration. I get IV saline through a port/cath several times a week to deal with my hypotension. If I have to travel (even by car) I do an extra liter of fluids before and after the flight. Try to get bulkhead (front row) seats, gives a little more legroom, and doing some simple calf stretching exercises can help. Compression stockings can be a big help as well. Be sure to use extra caution getting up from the seat when the flight is over. Just take it slow and it should go okay. Don't plan on doing more than getting to your hotel/lodging on the travel day, and expect your daughter to need some time to bounce back once you return home. I find that I often do okay on trips, because sheer excitement can keep me going. But I tend to collapse for several days, sometimes weeks, when I get home. But I am 35, not a teen, so hopefully she will bounce back sooner! Sandy

I have been having horrible GI issues the last several months. I have lost about 35 pounds (and I was not overweight to begin with!), have constant diarrhea, and incredibly difficult to treat nausea. I was recently diagnosed with Celiac Disease, and have switched to a strict gluten-free diet. I have not as yet noted significant improvement, but I have only been really strict about the diet for about 3 weeks. I definitely noted more problems with my IBS/GI issues after the onset of my POTS as an adult. (Had syncopal episodes as a teen, but wasn't diagnosed until I was 32 or so.) Sandy

Before my hysterectomy (which is a story unto itself!), my periods were awful, but I never made the connection between menstruation and POTS symptoms until after I stopped having periods. I had an endometrial ablation almost 2 years ago, and was fortunate enough not to have periods anymore after the procedure. Definitely improved things for me. I wish I could say things have stabilized further after my hysterectomy and starting on hormone replacement therapy, but I think at the moment I just have too many balls in the air. But for many, going on birth control with periods every 3 months can improve their symptoms/reduce flare ups. Sandy

I can't take florinef for any length of time. I generally will go on it very short term to stabilize by BP, and taper off as soon as possible. Why? Because migraines are a known and common side effect of florinef, and I get enough migraines under the best of circumstances. Just know that it is NOT a drug you can abruptly stop, if you are having problems, call your doc to plan a taper. Sandy

You poor thing! I know this is all terribly frightening, but as other posters have pointed out, you can't care for your children if you don't care for yourself. It is vitally important that you figure out what is causing the weight loss, and an inpatient stay may be the best way to get that done. Especially considering the fact that rapid weight loss puts a tremendous strain on your heart. You really do need to get a clear diagnosis for you're POTSy symptoms. POTS can affect just about everything, and GI issues like gastroparesis and slow motility are extremely common with us. I am an anorexia survivor, was diagnosed very young, I was only 11. My weight loss of recent months are completely different from my weight loss back in my days of rigorous fasting. And it is mainly the reasons that are different, the end result is very similar. But I have recently been diagnosed with Celiac Disease, and that was probably responsible for a great deal of my weight loss, diarrhea, nausea, vomiting, etc. Not once did I consciously decide to skip meals, I was simply to nauseated to eat. The chronic diarrhea was not the result of any meds, just severe GI irritation. If you didn't understand my history, you could have chalked up my recent weight loss to my history of anorexia, and I would have continued to spiral out of control. So when you see your nurse you need to insist on comprehensive testing. Sandy

I was initially told it would take me a year to get in with Dr. Grubb, and ended up seeing him just a couple of months after my initial phone call. It helps that, health permitting, my schedule is wide open, I can accommodate any last minute openings that might come up at Vanderbilt. (Which is exactly how I got in with Dr. Grubb so quickly!) Thank all of you for taking the time to answer! Do you feel it was a worthwhile journey? Do you feel you gained further understanding, or a clearer diagnosis? Were you able to incorporate new strategies for healing, and for gaining stability? I know FAR better than to expect a magic bullet or a quick fix. My health has just deteriorated so very far the last 6-9 months or so. I am increasingly desperate to find anything that could just slow down the slide. I want to keep my expectations realistic. But I also don't want to go to the trouble, and REALLY can't afford the expense of going to Nashville unless I can hope to gain a little ground... Sandy

My symptoms at the moment are not identical, but I had to comment because I literally just got home from the ER. I went in for severe neck and back pain, all up and down my spine, along with a respiratory infection. And got a spinal tap for my trouble, yipee! My neck pain is a burning, stabbing sensation, but so potent it makes it hard to swallow, and I have lost nearly my whole range of motion. More tests tomorrow, they are sending me for an MRI. My labs are a disaster, so they know something is up, just not sure what... Sandy

Have you looked into porphyria? It is another condition that can cause skin issues with sun exposure. Just a thought! Sandy

I sent off an application to be evaluated at Vanderbilt, and I am wondering how long it takes to hear back from them? My overall condition has deteriorated at an alarming rate over the last 6-8 months, and I am becoming increasingly anxious about what is going on with me. I was going to follow up today and just make sure they received my paperwork, but I was hoping someone could shed some light on how long it takes to get in, and an idea of what to expect. Doing the rounds of specialists lately seems to be the equivalent of chasing my tail! Plus my recent Celiac diagnosis makes managing my POTS even more complicated, and would LOVE some guidance on trying to manage the two together! Sandy

Just got up for a cup of tea, and my BP (standing) was 114/94 and HR was 145. But I had to take a sudafed last night. My "normal" BP is usually 100's/60's. But I have been doing very poorly of late, so been hanging out in 90's/60's, or even 80's/50's. (Which is when I REALLY feel awful!) My "normal" HR is usually in the 110's or 120's. Can't win lately. I'm on a teeny tiny dose of atenelol to try to keep the tachy in line (12.g mg, once a day), but have had such low BP so often lately I have been skipping the beta blocker. But as I am pretty tachy this morning, I took the atenelol and will keep my fingers crossed! I have orthostatic hypotension, so I always run low, and it only gets worse upon standing. Sandy

Dear Tinks, You will find that gastro and dismotility issues are the rule around here, not the exception! A lot of us have issues, either with nausea/vomitting, constipation/diarrhea, abdominal pain and cramping. Generally speaking, we're a pretty tough bunch to offend! I wish I could tell you an easy answer, but I can only offer sympathy! I would strongly encourage you to share any and all of your symptoms with the specialist. They will probably ask you about color and unusual smells, they really need to know everything. I understand being uncomfortable, I am rather shy myself and talking about my bowel habits in graphic and minute detail horrifies me more than I can describe. But it is all really pertinent information, and will help your doctor to evaluate you. Hope you have a good experience, and make a mental not of your bowel habits and what you have been eating lately. They will ask, it helps to be prepared! Sandy

The two times I have been under GA since POTS, I have done okay. Not great, recovery is rough! But no major problems either. I just take it for granted that anything I do is going to be a bit harder with POTS. Sandy

I have dizzy spells frequently, but no vertigo. I feel as though the blood is draining from my head, and see stars whooshing past me, and down I go! I used to only have near-syncope episodes, where I would get dizzy and bobble, but could typically sit down (very quickly) and avoid losing consciousness. Not so much anymore. My symptoms are getting much worse, where I am actually passing out cold. (And collecting the bruises to prove it!) Worse, today I had a dizzy spell lying down! I took my BP and it was 100/83, with my HR at 145. It seems like my pressure tends to have a really narrow margin when I feel my absolute worst. I mean I feel pretty awful when it's low, but all my symptoms skyrocket when the margin gets narrow. Sandy

Thanks for the reply, any support always helps, tangents or no! It is why I appreciate the forums here so much!I see an infectious disease specialist in the morning, we'll see if she can shed any light on what the heck is happening to me. Fingers crossed! Sandy

Not really much help, my RBC is frequently low. I have a tendency towards anemia, which was a total mystery to everyone treating me, until I found out a few days ago they strongly suspect Celiac Disease, which can cause anemia. (AHA!) But my numbers never get about low to mid normal... Sandy

I am recovering from a hysterectomy in January, and have had sex once since my surgery. From someone who used to have a very healthy appetite, the slowing of my drive since I have been sick if hard to cope with! Add abdominal pain and recovering from surgery, and it's amazing it happened once! I am going to find a way to improve this issue though, darn it! I gave up booze, I gave up work, I gave up going out dancing, and now I have to give up gluten (which means no more cake, bagels, pasta, even gravy!) I will NOT give up sex too! Sandy

So, some of you may know I have had a very eventful couple of months. I came down to my parents house because I was getting to a point where I was having difficulty caring for myself, both physically and financially. Really hard decision, as it takes me 500 miles away from my specialists, my friends, my church, and my boyfriend. But I was having frequent syncope episodes, losing a lot of weight, and having all kinds of terrible GI issues that were making it harder and harder for me to even get out of bed. And sadly my boyfriend is not independently wealthy, so could not arrange round the clock care for me or quit his job! About a month after getting here I ended up spending 8 days in the hospital. I was having horrific abdominal pain. While I tend to always have pain for a few hours after bowel movements, this was in a whole new stratosphere. So I got admitted, and it turned out that my Essure implant in my right ovary had managed to migrate out of place and back into my uterus. They did an emergency hysterectomy, and sent me home. But I also had C Diff, and other GI issues. While in the hospital, the gastroenterologist noticed that I had a low total IgA, which can cause a false negative for Celiac testing. Which I had. So she ordered a genetic blood test, to see if I had the genetic marker. I explained that I had just had an EGD and biopsy that came back negative as well, and she said that did not mean I didn't have it. They could have not sampled the right place, or looked closely enough in the right spots. Sure enough, the results come back and I do have the genetic marker. I am having my normal GI doc send the info from the EGD and biopsy I had back home, but she says she may repeat the test anyway. And she is confident that despite the fact that the gene is in one out of three people, that I do in fact have Celiac Disease. So she said I need to adhere to a strict gluten free diet, starting immediately. I know a lot of people have gone gluten free and experienced improvement. But part of me is devastated to be looking at ANOTHER incurable chronic illness! After doing some research, I am quickly realizing that Celiac Disease is a much more serious problem than I thought. I really thought it was just a food allergy, like lactose intolerance or nuts. That I could occasionally "cheat" and have some of the foods I love. But that is not at all the case. You really can't have ANY. EVER. And I feel like I have already lost so much to POTS. I am also really scared, I keep getting sicker and sicker. I have applied to the 2 week program at Vanderbilt. Has anyone done that? I am hoping that a team of specialists looking at me from head to toe could help me at least stabilize a little bit. And I am really not sure how to manage my POTS with Celiac. Celiac can interfere with the absorption of salts, and we all know how important salt is for POTSy people! So the fact that I (probably) have both, is going to make things even more complicated. Sigh. Sandy

((((Dani)))) All of us who battle this for more than a short time (and I admit it, I am insanely jealous of the people who merely have a POTSy period, and eventually got better!) have battled grief, depression, and despair in addition to our illness. It is NOT fair, and it is NOT easy. I have lost my marriage, my job, and my ability to have children. (Long complicated story, but just had an emergency hysterectomy in January.) There are days where I can't see the point of a life struggling to get out of bed. I have been dealing with this for over three years now, my birthday is always horrifically bittersweet because It all started with waking up on my 31st birthday with a migraine that ended up lasting 9 months straight. I have lost so many of my favorite passtimes and interests, because the results are too much for my body to handle in my new reality. So I will be the last to placate you with pointless platitudes. I am incredibly grateful, as I have an amazing support system. But that was not the case just three years ago. I built my system (with the exception of family) AFTER I got sick. Some was talking to people on here. I joined a really active church, where if I can't go to them, they come to me. I made an effort to seek people out who were positive and supportive. I may not be able to help my friends with babysitting their kids or cleaning their house, but I can offer a sympathetic ear, an open mind, and near limitless ampathy. And the one up side of my insomnia is my friends know they really can call me any time, I'm usually up! I try really hard to focus on what I can do, even if some days my list is as short as "I fed the cat" or "I ate some of the meal Mom brought me". (Things have been really bad health-wise lately, so sometimes I really have to struggle to come up with something, but I try!) I also take comfort in the fact that I am pursuing every single avenue available to me to try to improve my health. I am compliant with Doctor's orders (as long as they don't conflict important standing orders!) and have made every conceivable lifestyle change I can. It is anything but fun, but it makes me feel like I have some control in all of this, and I can take comfort in the fact that at least I am not sick because of something I am choosing to do. I will keep you in my prayers, and keep opening up on the forum. Sometimes just being able to voice the despair among people who really do understand can help you to get through the moment. Sandy

I have a medtronic reveal monitor, it stays in place for up to 3 years. Have had mine for about a year and a half. Really, not anything to panic about, it is not actually connected to your heart, and it a LOT more convenient than carrying a monitor around. It was a less than 1 hour outpatient procedure to place it. (I was at the hospital all day, but the procedure itself only took about an hour.) Hopefully will give your doc a much clearer picture! Sandy

I know at least in theory, POTS is chronic, not terminal. But I have personally had a couple of close calls, with my BP flat-lining. And I am currently in the middle of an unexplained weight loss slide, and am quickly running out of room to fall. I hope and pray better research, better treatments come along... Sandy

In my experience, both Beverly and Dr. Grubb himself are some of the most compassionate, knowledgeable, and truly KIND doctors I have ever known. That being said, however, I have had no small amount of frustration with trying to get feedback out of their office when I am in crisis. (In the hospital, etc.) I am not angry, I know that they have an enormous patient load, and Dr. Grubb has a very difficult personal situation which greatly limits his schedule. It is just frustrating to have such a hard time getting a response when things go to heck in a handbasket! That being said, I would definitely recommed ant POTSy person have at least a consultation with them, if at all possible. My understanding of what was happening to me was infinitely improved as a result of seeing them both! Sandy

I was told the waiting time was about a year, made an appointment with Beverly Karabin that was for a month or two out. Then she ended up having a cancellation and got in within the week. Because a crazy rare heart defect runs in my family (Brugada Syndrome) I got bumped up the wait list and saw Dr. Grubb about a month after my first contact. BUT, have had endless amounts of frustration in trying to communicate and coordinate care with their office. They are awesome and compassionate when you get in, but have such a heavy patient load, and a limited schedule for Dr. Grubb, that even getting in to see him I often feel "in the dark". Still well worth seeing though! My understanding of what was happening to me was vastly improved by Dr. Grubb's explanation. Sandy

Every time I deal with the medical establishment, I am shocked and dismayed by how very little compassion there is for the people doctors (nurses, techs, radiologists, the list goes on and on!) purport to "care" for. But your experience, Tearose, really is beyond compare. Thank you for being brave enough to share your story so that we may all gain wisdom for your horrific experience. Thank you for serving to remind me how much faith can carry us through even the most horrific of circumstances. I pray for your continued healing from this trauma in God's loving embrace! Sandy

I tried adderall extended release to battle fatigue, but it didn't succeed terribly well for the amount of side effects I experienced. In my case, if there is a side effect, I experience it, so I try to keep my meds to a minimum. Sandy