sandymbme

Mirena was one of the options I considered prior to having my endometrial ablation/tubal ligation. For me, ( I was 33 at the time and newly divorced) I had come to a point where having biological children seemed highly unlikely, and frankly dangerous. My periods were complicating all of my health issues, from the horrific effect all the ibuprofen was having on my stomach lining to the wildly unmanageable migraines. Since having my ablation, I no longer have periods at all. For which I am profoundly grateful! The recovery was not too terribly bad, I only really used the painkillers for a day or two. Not much worse than my periods, frankly! If child-bearing isn't a concern, I highly recommend this option! Sandy

I just came across an article about the possibility of Midodrine being withdrawn and had a near panic attack! I am currently taking 10mg 3x a day and STILL having issues with keeping my BP sufficiently high! I will be following this issue very closely, because without the Midodrine I am headed right back for an in-patient stay at my local hospital, only with no clear resolution! Sandy

I have been diagnosed with Chiari malformation by some docs, and Low-lying cerebellar tonsils by others. By tissue descends 5mm, so I am right on the border. After doing a cine-MRI and a spinal tap with fluroscopy, the "experts" decided that it is not the root cause of my POTS, not does it significantly contribute to my cerebral-spinal fluid pressure. That being said, I have had very little success with any form of treatment... Sandy

Thanks so much for the support! As I am sure you all know, it can help so much just to know I am not alone. My home health care nurse is coming tomorrow to draw some more blood for labs, so we'll see what happens next... Sandy

It has been a while since I have posted about my personal situation because it has become so complicated and confusing I am quite frankly overwhelmed. My doctor informed me three weeks ago that she would not release me to return to work, period, and that I needed to file for disability. To say this was hard to hear is a huge understatement. But at this point there are so many things going on with my body that make absolutely no sense and seem unconnected. So I was hoping perhaps someone here could shed some light... 1. A fairly recent MRI of the brain found possible demyelinating disease (aka MS, which scares the heck out of me!) 2. Recent bloodwork shows me being anemic, which my doctor found especially strange given that I don't menstruate, as well as my blood sugar being 220, eek! 3. My latest echocardiogram shows tricuspid valve regurgitation, as well as previously identified mitral valve regurgitation. 4. My fatigue and pain levels have skyrocketed. 5. I randomly lost about 16 pounds within a month. (Although admittedly, I'm not complaining so much about the result ! ) It seems like every system in my body is crashing at the same time, and my doc doesn't know how to make heads or tails of it. I have an appointment with Dr. Stillman at the Headache and Facial Pain Clinic at the Cleveland Clinic on July 15th, so I am sure we will address the neuro stuff then. And I of course will send the echo info to Dr. Grubb. But I just don't understand why everything is going at once. And a lot of my new issues can't be linked to POTS, so this is all very scary. Any insight would be much appreciated! Sandy

I was on mestinon and eventually titrated up to the 180mg timespan dose, but unfortunately severe GI complications forced me to stop taking in. I noticed a lot of improvement at first, but eventually ended up hospitalized due to the GI issues, just couldn't tolerate the med long-term. But my GI issues have always been fairly severe, so I hope you have better luck! Sandy

It seems like I have been fighting a losing battle with my level of function for the last three years. Some days I am actually well enough to grocery shop, run some errands, do a little light housework. Days like today, though, I can hardly crawl out of bed at all. And it seems that my good days are fewer and farther between as time goes by. But I live in hope... Sandy

I think a lot of women have posted about having hormonal issues of one variety or another. My mom, who is a labor and delivery nurse said that one of her OB's told her that IBS, PCOS, and endometriosis were a trifecta of ailments that seemed to always go hand in hand. I am certainly guilty as charged. In sheer desperation I ended up opting to have an endometrial ablation and tubal ligation procedure. Giving up on the thought of ever having kids was tough, but I simple could not endure the misery I was subjected to for a week of every month any more. Being one of the lucky few who ceased having periods after my ablation, I am glad I made this decision. Whether or not this has anything to do with my POTS, who knows? Kind of a chicken or the egg type of question if you ask me! Sandy

I too have joint pain, which along with pain from severe migraines can be crippling. I tried a gluten free diet, but did not notice any marked improvement, and as it was very expensive for someone with means as limited as mine, I went back to gluten. I do try to be gluten conscious, and not overdo the carbs, but I no longer try to avoid them completely. I was able to get some relief by going through a pain management program that included physical therapy, education, and group counseling. Unfortunately at the moment I am dealing with a serious downturn in my health and am currently too weak to do any of the exercises I learned in the program. Getting out of bed at all is a real challenge these days. And insult to injury is the fact that we have had a storm front basically hovering over my area for the last couple of weeks. And weather definitely plays a big role in how I feel! So I am currently left with trying relaxation techniques and praying for sun! For the record, I have only ever had imperfect result with painkillers, and between side effects and the rebound headaches they can cause I have decided they are not worth the trouble. Sandy

physically and emotionally HURTING!!!!!!

I has the qsart and the skin biopsy done, which in my case only ruled out small fiber neuropathy. While I am glad I at least don't have to contend with that, I would have appreciated at least have a clear answer, and perhaps something to treat. Sandy

We have had storms on and off for nearly the last two weeks straight, and by today I was literally weeping with agony. Sooooo hate storms! Sandy

I too, have had issues with tremors. I was on Reglan for some time to try to get my GI tract to function, which made the tremors MUCH worse. But they are still present to a greater or lessor degree on occasion. Usually it is just one or two fingers, but sometimes my whole hands.... Sandy

I had my testing done at Cleveland Clinic as well. As far as follow up care I was totally underwhelmed, it seemed like the only thing they cared about at all was the number of syncopal episodes I had experienced since my last visit. Since I am not one who faints often, if ever, my syncopes have very little to do with how I am feeling on a day to day basis. I get lots of near-syncopes, dizziness, and crash into walls and dressers on a pretty much daily basis. But my primary symptoms have always been migraines, weakness, fatigue, and GI complaints. So looking strictly at syncope does nada to resolve any of the issues that totally rule my life on a daily basis. So I see Dr. Grubb in Toledo now for my POTS management. That being said, they were vital at Cleveland Clinic in determining an accurate diagnosis. I live a few hours away (in Columbus) and doctors around here were absolutely useless in determining a cause for my crippling and unceasing migraines. I had one neurologist tell me to my face the only thing I needed was a good anti-depressant. GRRRRRR!!!!! But Dr. Stillman at the Cleveland Clinic called it on my very first visit to him. He noticed my elevated heart rate and low blood pressure and suggested a tilt table test on my very first consultation with him. Which I stupidly put off for several more months because my local neurologist insisted that there was no way I could have POTS. (He didn't really have any reason for thinking this, just said the test would be a huge waste of my time. I now kick myself for ever having listened as I bombed my tilt with flying colors!) I have had a lot of testing at the Cleveland Clinic, and they have been unable to ever come up with a clear cause for my POTS. Just lucky, I guess! Sandy

I had syncopal episodes as a teenager, almost twenty years ago. We did a quarter of aerobics in gym and I would drop like a stone five minutes into the routine. But no one could explain it at the time, and by the time i would be transported to the ER my symptoms had always abated. So mine doc at the time just wrote a note excusing me from gym that quarter and that was the last problem I had for years. However, 8/12/07 (I remember the exact date because it was my birthday, lucky me!) I woke with a migraine that lasted nearly 9 months and after much fruitless searching and near endless doctor visits I was finally dx'ed with POTS at the Cleveland Clinic. My health has slowly deteriorated ever since.... Sandy

My appetite isn't too bad, but it is not great either. But the combination of the weight loss and my low BP has my doc really concerned. I have called Dr. Grubb's office a couple of times now and have yet to get a response. Which is kind of par for the course. I ADORE Dr. Grubb, but his office his not always great about answering questions in a timely fashion when my primary care doc is trying to figure out what the heck to do with me. I am seeing my primary for the fifth time in two weeks tomorrow, am getting kind of desperate, afraid I am going to land in the hospital again. And Marni, divorce is really tough to get through, but I promise it is much easier than trying to battle your husband and your illness. At least now the only person's needs you have to concern yourself with are your own. Hang in there! Sandy

I have been battling some kind of viral thing for the last couple of weeks. I have had sore throat, coughing, runny nose. My BP has been really low throughout, and my HR has been unusually low (for me anyway) too. BP has been 90/60 or so, and my hr has been in the 70-80 range. (My usual ranges are 110/80 for bp and 100 or so for hr.) I have also dropped about 14 pounds. I have been very thin most of my life, but shortly after my POTS dx i started gaining weight, eventually adding 35 pounds. So while my vanity is delighted to be dropping these pounds, my doc is very concerned. Any thoughts? Sandy

Mine is always low, my usual is 110/80 or so. But when I am having bad flares, it can drop to as low as 60/30. (Which is awful! And scary!) Have been really sick with some kind of viral thing the last couple of weeks and my bp has been consistently low, typically 90/60. Yesterday at my doc's office it got down to 80/50, and I am still trying to recover. Sandy

My main POTS doc is Dr. Grubb, who is an electrophysiologist. My primary care doc is awesome at keeping all my docs, and all my meds, straight. I also have a couple of neurologists, a gastroenterologist, an OB/GYN, and home health care nurses. So definitely a team, nearly an army! Sandy

I have borderline Chiari malformation/Low-lying Cerebellar Tonsils. I have also been diagnosed with arthritis in my neck. Not sure if this impacted the POTS or not, I think it is a chicken/egg kind of question! Sandy

I feel for you so much Michelle! I seem to be right there with you. I have not posted in ages, have had two week-plus hospital stays in less than a month. It makes one feel so defeated when one's own body can not even be relied on. I have just been so exhausted it has simply been too much for me to get online and write anything. But I am fighting for my health and pursuing every avenue towards wellness, if only to have some thing to do! You, and all of my fellow POTSy people who are struggling right now are in my thoughts and prayers. I hope that the holidays do not overwhelm with stress and that we all find what comfort we may in our families and friends. May the new year bring far better tidings for all of us! Sandy

My symptoms have had a major turn for the worse since May, and I totally relate to feeling frustrated and helpless. I too, would love a simple, recognizable diagnoses of something easily treated. Thank God for the refuge of these message boards, so we have at least one place where we are understood! Sandy

I soooo relate to you there. Someone sneeezes in Venezuala and I catch pneumonia. I become very anti=social during cold/flu season, and take mega doses of vitamin C daily. Good luck! Sandy

I have been diagnosed with chronic gastritis, and have almost daily bloating issues. As I am only 34, and single, looking like I am 4 months pregnant is a huge blow to my self-esteem! I haven't had a ton of success with anything as far as the nausea of GI motily issues, although I have seen some improvement since I am getting IV fluids 3 times a week. I see the GI doc next week,and Dr, Grubb on the 19th, so I am hoping for some better ideas then! Sandy

Maisie, I think we all go through ups and downs with our symptoms. I think the scariest part is not knowing where the "floor" is, or just how bad it is going to get. Make sure that your doctor is aware of all of your symptoms, and the severity. And definitely don't rule out alternative therapies such as accupuncture, or herbal/nutritional supplements. Hang in there! Sandy