sandymbme

Just had the worst case of the shakes a few minutes ago! I get shakes a lot, and a lot of abdominal tremors and twitches along with severe pain. I have no idea how to make it better, although based on some of the tips I see here I am downing gatorade as fast as I can!

Thanks for all the feed back, I think that I will do a straight shot. And of course thank you so very much for all the concern. I feel so often lately that everything is slipping away from me, it helps so much to have people who know EXACTLY what it is like!

Thanks for all the feed back, I think that I will do a straight shot. And of course thank you so very much for all the concern. I feel so often lately that everything is slipping away from me, it helps so much to have people who know EXACTLY what it is like!

My situation has deteriorated to where I need more care than I can come up with on my own. So my family (aunt and parents) are shuttling me down to where they live in Charlotte. So should I: A) drive 4 hours one day and four hours the next, or drive 8 hours and collapse in Charlotte. My aunt will be the one actually driving, and her car's seat recline just about paralell to the ground. I lean more towards doing it in one shot, just because I often can't get out of bed the day after seeing Dr. Grubb, which is a five hour drive round trip, and I am afraid of getting stranded half way. What are your thoughts?

Wouldn't it be great if our heads could have veto power over our hearts. It is so easy for people who understand little or nothing about our situations to cause insult to injury with their thoughtless words. So many people in my life fail to consider how horribly defeating it is for me to be forced to admit I can not do something, hurtful words on top of that is almost more than one can bear! I would be willing to bet there is not a single member of this forum who can't relate! Hang in there, and bravo to you for recognizing and following what is best for your health!

So it has rained on and off all week and it is just killing me. Today I have only been awake a few hours because I would rather sleep than take the amount of narcotics required to make my pain manageable. I have arthritis in my neck, which accounts for some of it. But I also feel pain in every bone of my body, and it does literally feel like the pain is in my bones. Anyone else?

I can't think of the last day I was symptom free. I am lately dealing with crippling pain on a nearly daily basis. My GI problems are making the whole concept of eating and digestion unbearably difficult. But I am hopeful that a new treatment regimen my doctor just started could at least bring improvement!

Thanks so much for all the input! I am going to talk to my doc about whether she thinks testing for addison's would be reccomended at this point. She felt the flourinef compensated to a degree for the cortisol results, but the fall throughout the day definitely suggested adrenal fatigue. She was quite concerned about the hormonal results, just because they were so far out of range. I pick up the scrip for the progesterone tomorrow, we'll see what happens....

I had the test where they took 4 samples throughout the day. My cortisol was fine all day until the last sample when it fell out of normal range. What my PCP found VERY interesting was that my progesterone was "freakishly low" and my testosterone was very low. She said the hormone results were adrenal precursors and that my results indicated adrenal fatigue. So she is going to start me on natural progesterone and DHEA. I will keep everyone updated on how it goes!

I am being seen in my PCP's office on monday to evaluate my adrenal function. We did salivary cortisol tests and apparently the findings were signifigant. She won't discuss them over the phone. So I have seen some mentions of adrenal surges, etc., and wanted to know if anyone had ant insight to share? I am a little nervous about the results, but also kind of excited. If they could find something dramatically wrong that is treatable, I could potentially regain some health. And as much as my condition has disintegrated, I would give anything for some improvement!

I had the Reveal monitor implanted in March. I was kind of an unusual case because I have family history of a very rare and very deadly heart rythym disfunction called Brugada syndrome. (As if the pots wasn't enough!) I had no desire to wear a monitor for extended periods, and have been very happy with my implant. The info downloads over phone line so even though Dr. Grubb is 2 and a 1/2 hours away I can send info to keep him updated on a daily basis as to how I am doing. Once the swelling went down it really is no terribly noticeable. I had a little trouble with pain management during my recovery, but am doing just dandy now. I would definitely be happy to answer any questions, just pm me!

I had the essure procedure in march along with an endometrial ablation. No hormones, and even better for me, no periods! The recovery was not worse than some of my worst periods, and as having children is something that is just not going to be possible for me, it was the obvious choice. I too, was having issues with the hormones, I had been on tri-cyclen for about 15-16 years. As my health does not seem to be likely to stabilize any time soon, and some of my meds carry HUGE risks, I made my peace with the fact that if I do become a parent, it will be by adoption. But hey, DNA does not a family make! So I would say I definitely reccomend the procedure, especially with the ablation to minimize periods, or if you are lucky like me, do away with them entirely!

You poor thing! I had at least one doctor insist I just needed the right anti-depressent. While I do take cymbalta to help deal with my chronic pain and the depression it can cause, as many have said, you can not fake the TT! I am so very bleesed to have found a PCP that is so very willing to consult with Dr. Grubb to come up with a treatment plan, but it took a lot of work to get there. I interviewed several docs before picking mine, and would suggest you do the same. You pay them, they should work FOR you and WITH you!

Hilarious! But oh so true.....

I used to use feverfew years ago and had some success with it, but it was years before my pots diagnosis. You have pricked my curiosity, though. I am definitely going to discuss it with my PCP, as I no longer respond to any of the triptan meds for my migraines. The only thing that seems to work for me is megadoses of caffeine, interestingly enough. Like 600-800 mg. I will have a caffeinated bev along with 2-3 tabs of no-doz, or a caffeine drip in the hospital. But it can do awful things to my tummy. So I have to pick my poison!

I can totally relate to this thread. For one, my pots is slowly taking over my whole life. I am on extended leave from work and all anyone can say is "You'll be better soon." Well what if I won't? There is just as much chance that I will continue to spiral out of control! I had to go get a handicapped parking pass and I am only 34! Everyone jokes about the primo parking without understanding how humiliating it is to need it. Empty platitudes are maddening! As for life threatening, my pots nearly cost me my life just a month and a half ago. A really uninformed doc thought that since I could tolerate fluids orally it was fine to take me off the IV fluids. My BP tanked bigtime and my mom (who thank the dear lord is a nurse!) could not get a nurse to respond. When she decided to **** with the consequences and to intervene herself my BP had FLATLINED. (She got 60/0) She said had she not intervened I would have died. And when the nurse finally appeared, she yelled at my mom for touching hospital equipment. My dehydration from GI issues plus my pots symptoms nearly killed me. So complications from pots can absolutely be leathal. I take it waaaaay more seriously than I used to! And I also read "Just Fine" and found it extremely insightful and helpful! I highly reccomend it!

So about a year and a half ago, five weeks after I got married, a migraine started that would haunt me every single day for nine awful months. In the process of trying to make it stop, I lucked out and saw a doctor at the Cleveland Clinic who thought I very well could have pots. Dr. Stillman sent me for a tilt table test and I failed with flying colors. Like most of you, I had never heard of pots until I was diagnosed with it. I was referred to this web site, and it quickly became a source of information and support during a very scary time. What I did not forsee, was the fact that my fledgling marriage was going to quickly collapse under the strain. So I was forced to drop off the face of the earth. My ex-husband was less than generous in our seperation and divorce, and I found myself going from upper middle class to poverty level in what seemed a heartbeat. (And mine go pretty fast! LOL) I no longer had a computer, or internet access at a time when I could have desperately used this resource. My health has gone into a tailspin I can not seem to shake out of, despite various test, hospitalizations, med changes, lifestyle changes, etc. Ironically, I feel more blessed than I ever have in my life. I write this post due to the generosity of my aunt who felt being able to communicate with fellow potsy people was so necessary she gave me an incredibly generous birthday present of a laptop. My aunt and my mother have both dropped everything at a moments notice to help care for me when needed. My friends, who had been allowed only very limited access while I was married, have been amazing in their support and care for me. I spent more days in the hospital alone than I care to think about while I was married, but now that I am "alone" it seems that I am always surrounded by love. So my health does suck in a big way right now, no two ways about it. I am terrified of being disabled by my condition. I will be 34 in just a few weeks, but I frequetly rely on a cane for balance, as mine has become unreliable. I have a host of GI problems that seem impossible to diagnose, let alone effectively treat. My migraines are once again causing me a host of difficulties. I am having more near syncope episodes than I have had in years, and don't even necessarily need to stand for the world to start spinning away from me. But again I must count my blessings. I am being treated by one of the world's foremost authorities on pots (who also happens to be one of the kindest and most compassionate human beings I have ever had the priveledge of meeting), I seem to have finally assembled a team of local docs who are willing to be part of a cohesive treatment team, and found a really great GP who is great at playing grand central station for all of my mess. So my divorce was final in april, and I now live in peaceful companionship with my 13 year old cat. (I have no idea how I would cope without her, she is a greater comfort than I could ever adequetly describe. We live in this really great urban historic neighborhood where all my neighbors actually talk to one another. And while my apartment may be the size of a matchbox, I can usually stay on top of keeping it clean even on my worst days. I thought I would be claustraphobic here, going from a great big house to a 500 square foot apartment, but I have come to really appreciate its' size as I have grown more ill. And some of those same great neighbors happily come in and feed and water the kitty when I end up in the hospital. So I intend to be a regular voice on this message board, but I thought it might be good/helpful/interesting to hear where I have been this last year or so. I missed it!

I currently have an implanted "Reveal" heart monitor Dr. Grubb implanted in my chest to track my tachycardia symptoms over an extended period of time. I do have a very rare heart condition that runs in my family that we are also trying to definitively rule out. I have been repeatedly assured by Dr. Grubb that high heart rate, especially upon standing or activity is "normal" for potsy people. In the year and a half since my diagnosis, I have learned that an autonomic systems disorder like pots can cause all sorts of problems you would never expect to have. Just make sure you are sharing with your doctor(s) any time you get new symptoms, or if any aspect of your symptoms change. (IE increase in frequency, severity, etc) Hope that helps!

I don't know about how much "improvement" I get from IV fluids, but every time I have been hospitalized for pots flare-ups the IV fluids are VITAL in order to keep my BP from crashing. I just had a doctor who thought since I could tolerate clear liquids by mouth that I could be taken off IV fluids. Thank god my mom was there to intervene, because my bp went to 70 over undetectable before she threw the mother of all screaming fits to get the fluids restored before they killed me in ignorance!

I think the doc (who is a headache and facial pain specialist at the Clinic) meant is that it would change everything as far as treating my headaches.( I think ) I already had the qsart and I think your description of being stung by bees is quite accurate! I wasn't taken off any meds because they decided to do the test while I was already there for other treatment, hope that doesn't wreck my results.... I was kind of hoping this would give me some insight into my biggest question, which is, am I going to keep getting sicker? I have now been dealing with the pots-related stuff for a year and more and more and more keeps going wrong with my body. I just want to know if this is going to continue because we keep putting things off "until I feel better". If that is not going to happen I'd like to know so we can try to do some things (trips, etc.) while I am still somewhat, kind of mobile. I have had only positive experiences with this doc, but I didn't actually have an office visit with him. Just saw him briefly in passing. My appt. this trip was actually with his nurse practitioner, who is also very kind. But she generally doesn't do a whole lot without consulting with the doctor first. I am supposed to go back and see the doc after I get all my results. Thank you for your insight!

So I have just returned from a three day trip to Cleveland for some infusion therapy to try to get the migraine (that I have had for the last two weeks this time around) under control. While there, my doc postulated that I may have "small fiber neuropathy" and ordered a QSART and a skin biopsy. Doc said if he's right it could change the whole ballgame. Was just wondering if any one could shed any light on the tests, or on the possible dx.....Thanks!

My soon-to-be-former PCP is/was wonderful. She did her absolute best at trying to keep me in one piece for the ten years I was uninsured. She even returned a call once on Christmas day to her messaging service at about 10:00pm. She did her best to manage me on a shoestring budget, and was wise enough to recognize when she was out of her depth. Unfortunately her caseload (she sees primarily medicare/caid patients) is so heavy that she does not have the ability to co-ordinate care. But at least she had the honesty to tell me this, and gave me questions I should ask in my PCP search. I am just keeping my fingers crossed that I can find a new PCP with half as much integrity!

I'm so sorry you're principal made things difficult! Balancing pots with work is an enormous challenge and I wish you the best of luck! Hang in there and know many of us are right there with you in spirit!

I haven't posted in a while, I've just been too sick. But a trip to get my records from my local hospital to take to Cleveland has shaken me at least enough to post. I spent almost a week in the hospital here locally in June, and was fairly unclear why they kept me so long but was so sick and exhausted I didn't ask all that many questions. My husband swore that the doctors purposefully waited until he left the room to tell an incoherent me results or info. I was so out of it that apparently entire tests and procedures occurred that I didn't even remember until I got the records yesterday. So...it turns out that I have an abnormality with my liver, paired with abnormal liver enzyme results and was considered a possible surgical candidate the whole time I was there. I also had abnormal EEG results, as well as abnormal EKG results. (And I do clearly remember being told that the EKG was normal and I had nothing to worry about.) Apparently each part of my body, (excluding my heart- no one seemed to think it was important to bother a cardiologist) was assigned a specialist, none of which talked to each other. The "floor doc" who was supposed to be overseeing my case was actually 5 different doctors in 5 different days. It seemed to be a priority to no one to have some sort of a pow-wow to see why the heck I was having issues with so many systems at once. I was also diagnosed with "moderate chronic gastritis" as a result of the endoscopy they did on this trip, and discharged because I insisted on going home if they couldn't give me any answers. It seems like every system in my body is degenerating and it is scaring me to death. I am about a year out from the onset of potsy symptoms and have never experienced any real improvement, only decline. My pots doc doesn't seem to have much interest in my case and the nurses tell me that I am not having pots-related symptoms. My neurological uber-specialist is interested in my EEG results, my migraines, and my neuropathic symptoms, but can't shed any light on digestive or cardiac issues. I'm still waiting for my appointment with the gastroenterologist (September 30th for a follow up, UGH!) to shed some light on what is going on with my digestive issues. My PCP is just at a loss for the whole thing and my case file at her office has expanded to several folders. I live two and a half hours from Cleveland, where all my specialists are, but when I have to go to the ER the doctors here have never even heard of pots. I just keep getting sicker and sicker and no one seems to have the ability to step back and look at my whole body. I faxed my medical records to Dr. Grubb to be able to talk to them about an appointment next year, but have never heard anything back and when I tried to call and follow up the number I had was disconnected. (So if anyone has a current # please let me know!) I'm sorry this is such a long post but I just feel like I am chasing my tail here. I got married just over a year ago and feel like I have missed out on so much because of an illness no one can make heads or tails of. (and my mother-in-law seems to think is in my head! ) I am in near constant pain, either muscular or the migraines, and am fighting to keep my job. Like so many here, I have to keep my job because I NEED my benefits, but am at a loss as to how to manage that when there are so many days I can't get out of bed. I manage to keep a pretty optimistic attitude most of the time, but lately I'm having a rough way to go. How do you keep it together when your body is inexplicably falling apart?

I had my TTT at the Cleveland Clinic, and while it was the most miserable hour of my life the staff was wonderful. I too, have had real-life syncopes but failed to faint on the tilt. Just plain stubborn I guess. However my results were a clear case of pots, so I got my diagnoses that day. The staff was very kind and brought me gatorade, saltines, and cool cloths while I recovered. I had to lay still for about an hour sipping on gatorade before I could move, but it was no worse than my symptoms on an average day. They also made it clear if the test was unbearable they would stop it immediately. So don't worry, you're in good hands!