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sandymbme

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Everything posted by sandymbme

  1. Wow, Arizona Girl, kudos for being so open, and extra kudos for making very complex subjects as clear as possible. Given the number of days I don't make sense, even to myself, I am doubly impressed at your description of your history and your dx'es. I have heard subq is tolerated better by many people. In any case I wish you all the best in your journey, and applaud your courage in refusing to allow a disgusting and unethical doctor deter you from finding answers. I hope that you have an enormous amount of positive support in your world. I know I would never cope nearly as well without my support network. I have had enough trouble myself at times continuing to pursue my journey for knowledge after run-ins with judgmental and dismissive healthcare workers. To continue to press on after so horrific and traumatic experience is unparalleled courage. Sandy
  2. I remember you mentioning corn allergy in the past, maybe the slow FE has corn as an inactive ingredient? Ask your pharmacist. The trouble with supplements is they are not required to list the inactive ingredients. Such a rough time you have had you poor thing! I too, find myself being oddly relieved when they do find something, so that I don't look like the great Hypochondriac once again! Fortunately that is not an attitude I get a lot of anymore, now that I have official dx'es. But the scars never really heal, I am still, to this day, nervous every time I go to the ER that they will just think I want attention and dismiss my issues. Sandy
  3. Thanks! Polly the Wonder cat was my comfort and laughter and love, until Marty showed up! Now she suffers sharing me, and Marty suffers sniffling due to his cat allergy, and I soak up all the love! :)

  4. I don't know that I would function at all without IV saline. I get a liter 3-7 days a week. My orthostatic hypotension is completely out of control, even with taking 10mg of midodrine 3x a day. I really don't think I could function at all without it. I have a port/cath, which makes things really easy. But when you have IV therapy, you have increased risk of infection, so keep that in mind. Sandy
  5. Mine looked awful for the first week or so, but compared to my previous port has healed really beautifully! Hopefully one all the swelling goes down it won't be so prominent. A real down side of having EDS as well as POTS is that I heal badly, so I bruised terribly and had horrible swelling. As far as the port showing goes, I decided long ago that anyone who was put off by my port wasn't worth my time. I am happy to report that my attitude means I will be proudly displaying my scars on my wedding day next year, as I did indeed find someone who could care less about the scars. Anyone who is bothered by something so vital to stabilizing your health really isn't worth knowing! Hope you mend well! Sandy
  6. Having done some recent flying as well, I would echo the compression and hydration being really important. The fact that you have extra leg room is great. We ended up having a weather delay that stuck us 2 hours on the plane at the airport, so by the time we reached our hotel I collapsed getting out of the car. But that was my hip giving out from EDS, not blood pressure or tachycardia. As for your placard, I know the paperwork I got with mine said it was legal to use in any car I was in, so we took it with us on our trip. I really could not have managed without it. Also, any medications or supplies you may need do not count towards your carry-on allotment. So if you have a lot (as I do, I have an IV pole, liters of saline, and various supplies for hydration via port/cath) pack it in a separate bag without worrying that you will have to check it. What helped me most was having them get me a wheelchair when I checked in and got my boarding passes. I could have probably walked to the gate, but standing in line to go through security would have been a disaster. Bad enough when I had to stand in place for my pat down. Plus if you are in a wheelchair they wheel you right up to the front of the security line. Just have some cash ($3-5) to tip you "driver". Sandy
  7. When I got sick, I actually gained quite a bit of weight, for the first time in my life. I went from 125ish, (I'm tall, about 5'8) the same as I have weighed since high school (and I am 36 now) and went up to 160 over the course of a couple years. I couldn't get anyone to understand that no matter what their charts said, my weight wasn't normal for me. Then, out of the blue, just this year, my weight plummeted. I was losing 3-5 pounds a week, scaring the crap out of my boyfriend, and my parents were utterly terrified. That got people's attention. I was also having a whole host of GI complaints by that time. In March I was finally dx'ed with Celiac Disease. I have had a **** of a time stabilizing my weight since. I gained some weight back, was up to 140, but I am apparently super sensitive, and the slightest cross-contamination can make me sick as a dog. Which is actually the reason I am awake right now! (Curse you Benihana!) So bottom line, I don't know how much of my weight issues are POTS, and how much are Celiac. Sandy
  8. I started off with fainting with postural changes (during aerobics, horrible choice in hindsight!) 20 years ago, but that seemed to self resolve by simply not doing aerobics. Would have occasional dizzy spells, but nothing to write home about. About 4 years ago, woke up with massive migraine that lasted for months, eventually led to the Cleveland Clinic, a tilt table test, and a dx. Fatigue, migraines, and dizzy spells were major issues. Had GI stuff develop as time went on, but hindsight can now ascribe most of that to the Celiac dx I got in March. Back then I never really fainted, just got dizzy, perfected what I jokingly referred to as my "rapid sit". (Which was just falling on my bum.) Now, I also have an EDS dx, am incapable of probably 70-80% of the activity I had just two years ago. But I think that is more because EDS is progressive, and Celiac Disease interacts REALLY, REALLY badly with POTS. If I didn't have EDS or Celiac Disease I think I would have a much easier time managing my health. (I recognize this may be wishful thinking, though.) Sandy
  9. My "quickie" explanation has become: POTS/dysautonomia is a syndrome that affects the autonomic system (part of your central nervous system). Kind of like an automatic transmission on a car, the autonomic system is supposed to regulate all the stuff that should be on 'automatic' like heart rate, blood pressure, digestion, etc. So when most people stand up, a whole bunch of things automatically happen in there body to compensate for gravity, that DON'T happen in my body. My transmission stalls, and the results can either slow me up for just a couple minutes, or can short out my whole circuit board and fry my computer and require major repairs to get me up and running again. My "car" analogy has worked fairly well for people of all ages. If only it were as simply as replacing my transmission to fix me! Sandy
  10. With my Celiac Disease, I have a really, really hard time absorbing hydration orally. So I have been doing IV hydration via a port/cath for over a year now. But it takes up a lot of my "free" time. I spend 3-4 hours a day just trying to get (and stay) hydrated. Sandy
  11. Oh my goodness! Glad to hear you are mending so well! I had my new power port placed about three weeks ago (my last port ended up developing too much keloid scar tissue and just could not get accessed any more. And as purple is one of my wedding colors, I had to go with a lovely purple port myself!) and I have to say I am very, very happy with it. Recovering from surgery is less fun, and I have another one coming up October 5. But having the ability to hook up for extra fluids any time I am not doing well: priceless! We just swap out the needle once a week. Getting my port accessed is also less painful than peripheral IV, once it heals fully, which was why I was adamant about a power port. No more IV sticks for CT scans or MRI's with contrast! Hope you mend very soon, and get some really good info back from all this testing you went through! Sandy
  12. I count my lucky stars every day that I stumbled upon a great primary care doc, who really treats me as aggressively as possible, and demands that specialists do something for me. That being said, though, it really took two more diagnoses of things doctors had at least a little more familiarity with before I could get anyone aside from her and my home health nurse (who sees me twice a week, so knows better than most how sick I really am!) to take me seriously. I just kept getting sicker and sicker, with all these ER interns telling me I was exaggerating my pain, and there was no reason for my recurrent, incurable diarrhea. I can't tell you how relieved I was to be diagnosed with two more incurable chronic illnesses, how sad is that! But I was finally, finally "legitimately" ill, and no one could argue that I was inventing things for attention, or exaggerating symptoms for the sake of getting pain meds. I know how hard it is, but you really can't stop going to doctors, sadly. It was truly annoying to me that one of the rudest, most disagreeable docs I have ever dealt with finally dx'd my Celiac Disease. But if I hadn't sucked it up and followed up with her, who knows if I would still be here at all, I was losing so much weight towards the end. And my pain management docs were absolutely astounded that my EDS didn't get dx'd until I was 35, they had no idea how I managed to live with the pain all these years. The validation was so sweet, it made the suffering just a bit more bearable. With better dx's, I truly hope that my health can finally stabilize. So hang in there! Sandy
  13. I hate to point out the fact that most of the folks I have talked to in this forum are too old to have been eligible for Gardisil. The simple fact of the matter is with all of the political press picking on this issue, people have become very confused as to what this vaccine does. It will not turn your children into raving nymphomaniacs. There is a small percentage of people who have adverse reactions to the vaccine, much like ANY vaccine. The most common side effect is discomfort at the injection site. What the vaccine does is ensure that whether your child has unprotected sex at an age to horrifying for a parent to consider (which is pretty much ever, right? lol!) or on their wedding night, they will not get a sexually transmitted disease that currently 4out of every 5 sexually active people have. This is also an STD which not only can rob your daughters (or yourself, for the young ladies and gents out there) of their fertility, but can threaten their lives. If I were not too old for it, despite being in a monogamous relationship and getting married next year, I would be beating down my gynecologists door to get it. Since when is it a bad idea to prevent your children from getting an STD that can have such long ranging effects, and that is so asymptomatic they may not ever realize they have it until it is far too late. The bottom line is, this vaccine does not cause POTS, or I, and any number of other people, would not have POTS. I respect those parents that feel they are putting their children at risk vaccinating them. I respect their decision not to. But I do think that this issue has gotten politicized all out of proportion, and that it is not some evil thing the government is trying to subject your children to. Sandy
  14. Any change in weather is havoc for my health. Sigh. My best friend from high school suggested moving to San Diego. I pointed out I would be happy to as soon as he buys me and my Mr. a place. Sandy
  15. Joe- I don't know about reversing fatigue, although there are certainly things that can help. As far as any supplements go, make sure you advise your doctor BEFORE trying any. Supplements and herbals are still drugs, and can cause side effects and interactions with medications you are currently taking. At the very least, talk to your pharmacist. Most of them have had at least some training with supplements and herbals, and can warn you of possible problems. I personally have yet to find anything, from prescribed medications like Adderall, to various vitamins, herbal blends, etc. that has had any real impact on my fatigue. Just a final thought on herbals/supplements. Make sure you purchase from well respected companies that contain standardized amounts of the main, or active ingredients. While I don't know that regulating all supplements and herbals under the guise of the FDA is really a great idea (seeing as how they already make such a mess of prescription drugs!) it should always be remembered that as the supplement industry is completely unregulated, they can claim whatever they want on the bottles, and have no obligation to include in the pills the promised amounts of the medicine. They have no requirement to accurately list all ingredients. There are great companies out there, long-established, that put out wonderful products. But there are also plenty of unscrupulous companies out there that take cruel advantage of people's desperation, and charge outrageous amounts of money for "medicines" that not only don't work as promised, but could potentially hurt you. When in doubt, talk to a competent DO, they can usually recommend companies well known for their efficacy. Sandy
  16. My response has certainly changed. I used to only ever have a lot of GI issues, that would become worse with incidents of near-fainting. Having been diagnosed with Celiac Disease in March, which has improved some of my GI issues, I don't get as much of the nausea/vomiting with OH. However, in the 4 years since I got my POTS/OH dx, I have seen a big change in my frequency/severity of dizziness, and am now having frequent fainting spells. I had six or so today. Will be going to see my specialists at the Cleveland Clinic and Dr. Grubb in Toledo to see if we could get this under any better control. Fingers crossed! Sandy
  17. Like Angelika_23, my testing was done at the Cleveland Clinic, and confirmed by Dr. Grubb. The TTT test is extremely valuable, despite it's unpleasantness, and relatively non-invasive. It has a value not only in diagnosing POTS, (for which it really is the best method of diagnosis) but in establishing a baseline from which to compare the effectiveness of any given treatment. Were I you, I wouldn't refuse a test that can give a great deal of information, at relatively no risk. It is unpleasant, I will grant that, but they don't strap you down until you faint. I made it through my whole test without fainting. They have a set amount of time you stay in each position, and the only real difference made by fainting is that it ends the test more quickly. The straps are necessary so that if you do faint during the upward tilt, you won't fall and injure yourself. But in my experience, the staff did everything they could to make me as comfortable as possible, clearly explaining each stage of the test. I would do a TTT over a abdominal CT w/contrast (why, oh why, must they torture an already miserable gut with a contrast "cocktail" that tastes like garbage? too cruel!) any day! Hope this helps, and good luck! Sandy
  18. I am Scottish, Irish, Dane, English, Austrian. (Also white female.) I don't know about POTS, but my GI doc told me my Irish heritage put me at higher risk for Celiac Disease. My POTS is caused by EDS, which came by way of my Mom's side of the family (the Irish, Scottish, English, and Dane are all her side, what can I say? We got around! )
  19. My swings also depend on how I am doing overall. A good day will see me with about a 70 or so sitting HR, and standing of around 100. Have been really ill this week, had bad celiac attack, which always causes my POTS and EDS to go nuts as well. My HR at 3:30pm (which was the soonest I could entertain the idea of getting out of bed) was 126 sitting, but I had taken it right after I had just passed out. Bad day today/yesterday, lots of syncope and near syncope episodes. I didn't dare standing, was home alone. Usually when it is that bad it is about 70 beats per minute higher standing. Sandy
  20. I have very deep ridges in my toenails, and more slight ones in my thumbs. As for anemia, I have frequent anemia, but thus far it has never been so low that I have needed a transfusion. Came close once, but managed to survive without it. I am also almost continually dehydrated, between POTS and Celiac Disease. (Figures I would have a disease that prevents absorption of bile salts and hydration, and a syndrome that requires enormous amounts of fluids and salt!) So I do a liter of IV saline via my port/cath, just to keep things running at all. Would be interesting to know if there was a correlation though? Sandy
  21. I can't begin to express how much I empathize! For two years after my initial dx, the POTS was the only thing they could conclusively find wrong with me, but I kept getting sicker and sicker. I was so (initially anyway) happy when I finally got my dx's for EDS type III and Celiac Disease. There are some doctors I would STILL love to hunt down and shove my results in front of their face(s) and shout, "who's a drug-seeking, hysterical, hypochondriac now?!?!" Unfortunately, I would probably immediately pass out from all the jumping, so it just isn't practical. Just remember that numbers don't equal the truth of what your body is telling you. Perhaps it has only been through your careful management that you have not seen any bigger decline? In any case, as other posters have said, the point of all the treatment we undergo is to keep our worst symptoms (HOPEFULLY!) in check, they can't cure us. So I would look at your results as confirmation that you are doing everything you can to take care of yourself as well as possible, and I will be hoping that continues to work out relatively well for you! Sandy
  22. Not to argue the previous poster who said hot flashes only last a moment or two, but that was NOT my experience at all! I had to have an emergency hysterectomy in January, and woke up in full-blown menopause because they had to take my ovaries as well. I had always pictured hot flashes as a moment or two of discomfort and fanning, but that was just not the case for me at all! I would be broiling, flushing in my cheeks, sweat pouring off my body, in absolute misery. Only to be thrown to the other extreme of shivering and desperately grabbing for blankets when they finally passed. I was very reluctant to do HRT, I have so many health problems as it is and I was terrified of adding to them. But I have been told by several doctors that the transdermal (patches or gels that you apply to your skin, rather than pills taken by mouth.) estrogen methods of HRT are really very safe. I use the Vivelle dot patches, and they worked almost on contact. Were I in your shoes, I would make an appointment with my gynecologist and get their thoughts, and perhaps a free trial of HRT. The results were almost instant in my case, so a trial should be plenty to help you figure out if it is POTS or menopause. Good luck! Sandy
  23. I am unable to work, and almost entirely housebound. My social life is mainly either internet based, or those friends who are willing to come play at my house. I was forced to give up my car at the end of last year, and I will not be renewing my driver's license when it expires. (I think losing the independence that comes with driving was in many ways the hardest loss.) I have three different chronic illnesses, though, and they do NOT play well together. So I wouldn't want someone to look at my abilities and think they are doomed because they have POTS. Ironically, my home health care nurse has vaso-vagal syncope, and while she can't work in a hospital environment, she does fine in home health. So it is possible to have a wide variance in abilities. Even among those of us who have only the POTS dx to deal with, have a great variance in day to day well-being. That being said, I feel blessed beyond reason. I have an amazing man who is foolish enough to want to marry me next year, knowing full well what he is signing on for. I have incredible friends who have stood by me for years. I have a wonderful and supportive church. I have a feline "boss" who gives so much comfort and laughter I really can't imagine coping without her. I also recently discovered that I might be a very good candidate for a service dog, thereby providing me with a really easy way to get around my fiance's insistence that I don't get to have a dog until the cat dies! (Seeing as how she is only 2 and a 1/2, this would have been a long wait!) Every day I find more things to celebrate, which I do my very best to focus on, as it makes life so very much easier to cope with! Sandy
  24. I have had several surgeries, and honestly, I think the situation that requires the surgery usually makes things harder for me than the anesthesia. I have several dx's though, so everything tends to cause a domino effect on me. Ultimately, I think if you can avoid surgery that is always preferable, but if not, just make sure your whole medical team (nurses, md's, etc.) are aware of your POTS. That way everyone can be on the lookout for problems. Sandy
  25. I had a variety of headaches when I was diagnosed with "Chronic daily headache", the vast majority being migraines. It was absolutely crippling. I "lived with it" for almost 9 months, by which point I was absolutely contemplating suicide, I simply could not bear the pain anymore. Dr. Stillman was (and still is!) a Godsend! He diagnosed the Chronic Daily Headache, which was news to me, as I have been a migraine sufferer all my life and never heard of such a thing. But I can certainly vouch for it's existence! We introduced some new meds, made some lifestyle changes, but while I had decent improvement, it seemed impossible to get rid of them entirely. It turns out my undiagnosed (at that time, was confirmed in March) Celiac disease was making things much harder. Adopting a gluten free diet along with the med changes helped an enormous amount, although I still get them occasionally. If so, I usually try DHE (dihydroergotamine) injections first, and failing that a triptan. Triptans are a last resort, though. They rarely work well enough for me to be worth the side effects. I do get occiptal migraines, as well as in other locations. Sometimes it feels at though my entire head is throbbing to each beat of my heart. Sometimes I get icepick headaches in my eyes and elsewhere. Sometimes the pain is one-sided, sometimes it hurts on the top of my head, and is so blinding I can't see. Unfortunately, my sundry conditions tend to aggravate each other, so I feel like I am forever walking on the edge of a knife in terms of trying to treat everything at once. Sometimes it works, and when it doesn't, I visit the hospital for a couple weeks. Which I HATE! Sigh. That said, I would highly recommend ANY of the doctors at the Headache and Facial Pain Clinic at the Cleveland Clinic. They are totally prepared to care for complicated cases, and aren't thrown by rare diseases. WELL worth the trip! Hope this helps! Sandy
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