sandymbme

I have had some success using feverfew as preventative. There used to be a wonderful tea, called migrawonder, that gave me awesome results. So naturally, they stopped making it! Sandy

Just about any ride (as in amusement park rides) would be a bad idea. One of the major symptoms of POTS is an inability of the body to compensate for gravity when one is changing position. We are MUCH more prone to syncope (fainting) episodes with rapid positional changes. As for the rest of your issues, they could be POTS-y stuff, it's hard to tell sometimes which came first, the chicken or the egg. Just be sure to bring up any new symptoms with your doc. Good Luck! Sandy

I don't do neurofeedback or yoga, but I have just started seeing an acupuncturist. I have had two sessions, and I find it very helpful in dealing with my nausea, but have not gotten a lot more than that out of it thus far. My primary doc has me on several supplements to help with my GI symptoms, as I am so often intolerant of many meds she tries to limit prescriptions as much as possible. The supplements have led to some improvement, but I am currently going through the worst period I have even experienced with my health, so it is sadly just a drop in the bucket at the moment! Sandy

I was really torn as to which answer to give to this poll. I ended up with "in a relationship with more ups than downs", because my current relationship is pretty darn good, despite me really struggling with my health from day one. BUT, I got married 5 weeks before I initially got sick, and that marriage quickly crumbled, in large part due to my illness. My ex-husband was intrinsically a very selfish person, and when I required care, he could not provide it. And prior to dating my current boyfriend, no one had been able to handle it. As Dr. Grubb told me shortly after my divorce "Oh dear, it's not your fault, men just don't handle illness well." And experience has proven that to be true, for the most part. But my boyfriend and I have been dating for a little less than a year now, and he has been supportive and kind, and my health is currently the worst it has ever been. So I think the answer is, men (or women for that matter!) CAN coexist with Dysautonomia, but it requires a lot of maturity, compassion, kindness, and empathy. Chrissy, it sounds like your boyfriend is in VERY short supply of those attributes, and the sacrifices required of you to make the relationship work would require energy that you don't have to spare. It is hard and scary to face POTS alone, but trust me, so much better that than trying to feed a self-destructive relationship and try to take care of yourself. The best thing that ever could have happened to me was the end of my marriage! Good luck, and be strong! Sandy

My at rest heart rate is around 100-120 without meds, with my beta blocker I am sitting between 70-90. But the beta blocker tends to crash my bp, so it is a very delicate balancing act! Standing w/ meds: 100-130, w/o meds: 120-160. Sandy

I can only just barely stay conscious with 10mg of midodrine 3x a day! It keeps my bp hovering around 100/60 seated, 85/55 or so standing. I really don't know what I'll do without it! My bp was so wildly out of control without it, almost died one hospitalization because my bp literally flatlined! Crap! Sandy

Just got more test results, I tested positive for Epstein Barr virus as well. Still waiting to hear from my Doc what she plans to do with me treatment-wise. I know she was going to consult with an infectious disease specialist first. I am just so darn relieved that after months of knowing something was wrong, but being unable to find a reason, to finally have some definitive results! Sandy

I have thought about listing her, even though she is just general practice. But she is not currently accepting new patients. Unfortunately, I made too free with her name when she was first starting her practice a couple years ago! It seems to me it can be even harder to find a good PCP than it is to hunt down the specialists we all rely on.... Sandy

Thanks for the quick feedback! As I am sure you all can relate, having a sounding board helps more than I can express! One of my very good friends has CVID, and strongly suggested I be evaluated for it, or other primary immune deficiencies. I will recommend to my PCP the other tests you mentioned arizonagirl. And I think my treatment plan includes anti-virals as well as the long-term antibiotics. I am incredibly blessed that my PCP is always hunting down new angles to treat me from. She tested me for the viruses after attending a conference on infectious disease, and immediately thought of me. She rocks!

So the last couple of weeks have been some of the worst I have experienced. Fatigue is downright crippling, abdominal pain seems to be bloody unmanageable, and I seem to be shedding pounds like water these days. My appetite is slim to none, nausea is uncontrolled even using phenergen or zofran. My PCP attended a conference on infectious disease, had a eureka moment, and screened me for three viruses. Two of which came back positive,(Human Herpes 6, and Mycoplasma Pneumoniae) and based on the results she is now testing for a fourth (Epstein-Barr). All of these viruses are linked to Chronic Fatigue Syndrome, as well as some other nasties I would rather not contemplate. She (my PCP) is hunting down this specialist via email for treatment guidelines, but told me to expect a minimum of 6 months of antibiotic treatment, as well as anti-virals. Anyone been down this road? I would love some insight/encouragement! Sandy

I was on Mestinon a couple of years ago, and while it helped my POTS symptoms a great deal, I couldn't tolerate the GI complications and had to go off of it. But it is definitely worth a try! Sandy

I have had diarrhea for the last two months, and severe POTS symptoms. Not sure if the two are linked, but it seems likely. Have had scoping from one end of my GI tract to the other, and no one seems to be able to figure out what on earth is going on with me. Have even consulted with GI specialist at the Cleveland Clinic, but no one seems to have any answers. My primary care doc is now theorizing that I have GI inflammation, and is starting me on a regimen of Cat's Claw and Boswellia, and wants me to start using UltrainflamX (a medical food) to try to get some nutrients into my compromised system. On top of everything else, I have also had crippling abdominal pain, and rather drastic weight loss. I am desperately hoping this new regimen helps! Sandy

I too suffer from chronic pain that seems to be associated with my POTS. I actually had tremendous relief and good results going through a four week pain rehab program that incorporated physical therapy, education, and group counseling. Unfortunately my health has deteriorated at a shocking rate over the last six months or so, and with my failing health my pain is definitely on the rise again. But I would encourage you to seek out a physical therapy based rehab program. The painkillers can cause a variety of complications over the long term, not the least of which is increasing tolerance leads them to be less effective, requiring higher and higher doses. And practically every doctor I have ever consulted on my POTS (and I have seen some of the foremost experts) agree that exercise is vital in maintaining optimal health with this syndrome. I have to use a fair amount of narcotics myself these days to manage my pain, but I know that I got better results overall with physical therapy and plan to get back on that horse as soon as my body cooperates! Sandy

I think you will find a LOT of POTSy people suffer from GI complications, especially motility issues. And while you definitely want to continue your GI evaluation, don't forget that gynocological symptoms can cause very similar issues. I am currently dealing with an ovarian cyst that is causing vicious pain, nausea, and bloating. But went through two months of pointless GI testing before my cyst was discovered incidentally on a CT scan. I have been on reglan in the past, and responded really well to it, but unfortunately developed neurological complications that forced me off the drug.... Sandy

Feeling a bit better today. My home health care nurse came today to access my port/cath, and brought my lab results of the blood draw we did friday. Interestingly, the Cleveland Clinic GI's theory about my hemoglobin/hematacrit "running low" seems to be out the window. My RBC, hemoglobin and hematacrit were all well within normal range. But my MCV (104) and MCH (34.3) were both high, as well as my glucose (130). My potassium was only barely in normal range, a tenth of a point lower and it would have been low. I am going to have them draw more blood to check my CBC since I am symptomatic again. And I am thinking that a hematologist may definitely be in order. I'm just so tired of seeing so many doctors with no clear answers, I feel like I have been chasing my tail for the last 6 months or so. Thank you all so much for your concern and support! It helps so much just to have an audience that doesn't think I'm crazy! Sandy

I am loath to go to the ER as they have started to act as though I am a drug-seeking neurotic. I will call my GI doc in the morning, and if he insists I will go. But the gastroenterologist at the Cleveland Clinic was convinced that the blood I have had appearing is from internal hemorrhoids, despite the fact that the colonscopy showed them as being intact. I have had low iron levels on some previous bloodwork, and have been taking an iron supplement for several months. Despite that, my labs still show anemia. I am going to post all my abnormal labs from my last admission, which was 10/11-10/14/10. 10/11 (10:34pm) RBC 3.33 L Hemoglobin 11.1 L Hematocrit 32.5 L Urine (11:30pm) pH 7.5 H Urobilinogen 4.0 H Nitrite positive Blood Chemistry (10:34pm) Potassium 3.3 L Anion Gap 8 L 10/12 (10:08pm) Hemoglobin 10.8 L Hematacrit 33.0 L 10/13 (6:34am) WBC 11.35 H RBC 3.2 L Hemoglobin 10.6 L Hematacrit 32.6 L MCV 101.6 H (10:28pm) Hemoglobin 10.0 L Hematacrit 30.5 L 10/14 Hemoglobin 10.7 L Hematacrit 33.3 L It's all greek to me.... Sandy

So once again I seem to be passing bright red blood in my stools. (Diarrhea, really.) My abdominal pain is epic, and I am terribly fatigued and nauseated. But I am reluctant to go to the ER for several reasons. I just saw a GI specialist at the Cleveland Clinic on Thursday, who is of the opinion that my pain is neuropathic/abdominal wall pain. He ascribed my low RBC, hemoglobin, and hematocrit numbers to me probably "just running low" on a normal basis, rather than an indication of blood loss per se. The last time I went to the hospital, they admitted me for three days, but after my colonoscopy came back with no significant findings they all but shoved me out the door. I really don't have the money to keep running back to the ER or doctor's offices every time my symptoms worsen if all that happens is being labeled a hysterical female. My labs have been beyond screwy, with not only anemia, but potassium being low, as well as lots of issues with urine as well. My BUN and BUN/CREAT ratios were pathetically low. I can't figure out what to do. Thoughts? Sandy

Thanks all! The trip to the Cleveland Clinic was somewhat disheartening. The doc kept focusing on my emotional mental state, and ascribed my pain to being neuropathic/abdominal wall pain. Sigh. Part of me wants him to be right, because I would love to have an easy solution for once. But my labs have been so funky I can't write everything off to being all in my head. He did order some testing, we'll see how it goes. Sandy

I was working as a department manager of an upscale retail store when I first got sick. I LOVED my silly retail job, and was devastated when I had to leave it. But I just could not handle 50 hours a week on my feet. I had intermittent FMLA leave, but it wasn't fair to my staff or my employer to be so inconsistent with my attendance. So I got a desk job doing customer service type work in a call center for a bank. But since July of '09 I have only managed to work about three months. I have been on leave this time since May, and my short term disability leave expires November 5th. I am terrified of what the future will bring, because my employer is now saying my long-term disability insurance lapsed. (Like I would have EVER elected to stop that coverage!)I am terrified of what will happen if I lose my benefits. At this point, I can't say when, or if, I will ever work again... Sandy

Just had my reveal monitor downloaded the other day, my highest tachycardias are in the 190-210 range. Guess I'm off the charts! Sandy

I had some really good results managing mt POTS with mestinon, but unfortunately could not tolerate the drug due to GI complications. It is definitely worth a try in my book, it helped my symptoms a lot. If only my belly had cooperated! Sandy

Thanks for the comments, have been having soooo many complicating issues that I have been too sick to be on for a while. My PCP is more concerned about the insulin levels because at 2 hours it was above normal range (max is 55 at 2 hours), which indicates that my body is not metabolizing insulin the way it needs to. She was less concerned about the blood sugar because she said there are any number of things that can elevate sugars, but the insulin level indicates a serious issue. She is reluctant to put me on metaforin, because I tend not to tolerate a lot of medications well. So she is recommending that I try to manage it with diet and exercise. Interestingly, this came about after I mysteriously dropped close to 20 pounds, and I was on the low side of normal weight range to begin with. I have also developed some really nasty GI issues in the last two months, and I'm seeing a GI specialist at the Cleveland clinic tomorrow. My neuro at the Cleveland clinic is also evaluating me for porphyria, as if I didn't have enough trouble! The bloodwork came back negative, but apparently the urinalysis is more precise, so I am turning in my 24 hour urine sample tomorrow. Have been having HORRIFIC abdominal pain, along with alternating bouts of diarrhea and constipation. My nausea is so bad I am having considerable trouble eating. I am just a hot mess at the moment! Sandy

Thanks for the comments, have been having soooo many complicating issues that I have been too sick to be on for a while. My PCP is more concerned about the insulin levels because at 2 hours it was above normal range (max is 55 at 2 hours), which indicates that my body is not metabolizing insulin the way it needs to. She was less concerned about the blood sugar because she said there are any number of things that can elevate sugars, but the insulin level indicates a serious issue. She is reluctant to put me on metaforin, because I tend not to tolerate a lot of medications well. So she is recommending that I try to manage it with diet and exercise. Interestingly, this came about after I mysteriously dropped close to 20 pounds, and I was on the low side of normal weight range to begin with. I have also developed some really nasty GI issues in the last two months, and I'm seeing a GI specialist at the Cleveland clinic tomorrow. My neuro at the Cleveland clinic is also evaluating me for porphyria, as if I didn't have enough trouble! The bloodwork came back negative, but apparently the urinalysis is more precise, so I am turning in my 24 hour urine sample tomorrow. Have been having HORRIFIC abdominal pain, along with alternating bouts of diarrhea and constipation. My nausea is so bad I am having considerable trouble eating. I am just a hot mess at the moment! Sandy

Just got my results back from my 2 hour GTT, and not sure I am making sense of the results. I am more than a little freaked out as my grandfather died due to complications from diabetes. Insight, anyone? Time Glucose Insulin fasting 79 <2 30 min 178 did not compute 60 min 152 73 120 min 148 65 My GP said she is actually more concerned about the insulin response than the glucose, but I don't like either! Sandy

I occasionally indulge in a cocktail or a glass of wine, but like a lot of folks on the forum, I pay a very stiff penalty if I do. So I reserve having a drink for special occasions, when I know I will have a couple of days to recover. (Because sadly even just a couple of drinks causes a two day hangover!) Definitely talk to your doctor first, though, and make sure none of your meds will cause problems. It is really hard feeling like you give up so much for this illness, but drinking is one of the few things you can control. So while being able to party with friends is grand, spending time in the hospital limits your social life a great deal more than abstaining from alcohol! Sandy