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Everything posted by CharmedLinz

  1. I might of missed a post since this book was just released this spring. Has anyone heard of this Theory or read this book??? Unfortunately I don't have $1,000 to spend a book, ridiculous, makes no sense to me!!! Still curious about it though. http://www.amazon.com/Driscoll-Theory-Ehlers-Danlos-Communicating-Hydrocephalus/dp/0984847235/ref=sr_1_2?s=books&ie=UTF8&qid=1341378901&sr=1-2&keywords=mast+cell+disease
  2. Thanks for posting this christy. Question... For those that have had heparin tested.... Has your seratonin been tested??? I ask because I looked up the heparin test which will have to be a send out from my lab, and another available test is the the serotonin release assay along with the heparin unfrac as a panel. It has a link to information about heparin auto antibody. So I wonder what the relation is as I've had a high serotonin level. Also on the pgd2 is that really different than the pgf2?? My doc ordered the pgd2 couple years ago and the lab switched it to pgf2 which showed nothing?? Which lab runs the pgd2?? Thanks!!!
  3. Yes Jen it's a roller coaster isn't it. I bet the fact you had been approved by your company for Long Term Dis helped a bunch. I've heard that is looked at. The company I had been working for was small and fairly new so they had no such plan, and I had to quit working immediately after struggling for 6 months. My Boss was nice enough to write a supporting letter for me when I filed a 18 months later for Disability, stating that I had been unable to continue to work. She stated in it too that they had no means to offer long term dis but had kept my spot open for me for 6 months and then couldn't continue without filling it. So that letter probably helped as much as the fact I couldn't drive and all the medical records. I was at that time unable to perform all the easy day to day living tasks. Now however, like I said my Mother takes care of me mostly. No walking, showering, or anything like that without her around. I even have to brush my teeth sitting down, so I know what you are talking about. Though I can't imagine having that many concussions from fainting, good for you for keeping your chin up, I know it's probably very hard on most days. This constant fight just seems so silly to me. I think anybody that is bed bound or wheel chair bound and has documentation of the necessity of living that way from a Doctor should have the right to receive disability without all this fuss. Not to say that "all" bed bound people or "all" wheel chair bound people, "can't" work.... I know many people for many reasons who could and would be able to work. However if you are unable to perform your daily living tasks and can't work, it just shoudn't be this hard to keep our heads above water, we have enough to deal with. The roller coaster is a bit hard on certain days. There are times I feel guilty after reading someone elses horror story. My Mother reminds me on those days that what employer would put up with someone who smelled from not taking a shower, or barfed after eating and standing too quickly, or turned around to get up and fall over slumped in a chair from vertigo. My favorite is feeling like I could write a book....except I go through weeks where I can't see the screen straight and my fingers are now about 98% numb and I'm down to typing with one finger instead of my past 92 words per minute. There are hours where I think I could help on the phone, so I make a few phone calls for my Mom, and get reminded that I often sound like I'm drunk and slurring my words and I don't even notice. Oooh goodness I've let this go on too long and I'm blabbering. I just sooo wish that someday we could all be treated equally. I'm constantly reminding myself as I'm sure we all do, that I didn't get sick on purpose, it wasn't in the plan, it is what it is and all I can do is deal with it and realize that it's not my fault, nobody would want to feel this way or live this way. We all do the best we can!!! Hugs to all, goodnight.
  4. SHOCK is an under-statement!!! I had absolutely NO words when my approval letter came through on my first try. Mine started in August 2010 and I'm still SHOCKED daily. Mostly because of the horror stories I read and I feel so bad for those that aren't immediatey approved that are even worse off than I am. I am just now starting to rely on a wheelchair and I know people bound to wheel chairs that have been denied. So yes very Bittersweet indeed for countless reasons. My health has taken a drastic nose-dive south since then and my Mom is now basically taking care of me, but I still dread the review I know will happen at some point. I was told mine was probably approved first time because my occupation was a Driver, and I had been told by my PCP that I should NOT be driving. Plus I have zero financial resources nor do I own anything, so I think that comes into play. I'm thankful and grateful and I wish to win the lottery so I can help all those people who deserve to be on disability and are still fighting for that small bit of help and dignity.
  5. Hello All, Sorry to have ignored my own post for a couple of days, just needed to be away and not type. I did read your posts. Will answer them now...... Sue--- My GI Doc was able to order the Ocreotide scan off the result of a high Whole Blood Serotonin Level. He backed it up with a High Histamine Whole Blood, and the 3 hour GTT Insulin Levels. The 5HIAA urine is only accurate 50% of the time. Here are my levels from my GTT test.. So here goes..... Fasting Insulin 9 uIU/Ml range is 3-25, my insulin fasting has been as high as 19 Fasting Glucose 85 mg/ml Fasting Growth Hormone .68 ng/ml range is 0-10 30 minute Insulin 205 range 20-112 Glucose 66 GH 1.17 1 Hour Insulin 176 range 29-88 Glucose 143 GH 0.53 90 Minute Insulin 195 range 26-84 GH 0.21 2 Hour Insulin 126 range 22-79 Glucose 126 GH 0.14 150 Minute Insulin 29 range 3-25 GH 0.14 3 HOUR Insulin 19 range 3-25 Glucose 61 GH 1.53 Christy-- We are trying to get into see Dr. Afrin in December on our trip or possibly another high up MCAS Doctor in Boston that may be more feasible for the trip and with some of the weirder markers I've had lately. My Mast Cells won't show up in Bone Marrow unless I have systemic. Which is still possible as I have never been able to get a Tryptase drawn at the right time. This Hematologist though said he doesn't even think I have Mast Cell problems, which has been proven that I do. So I don't even know that he would look for Mast Cells if we do this Biopsy. Claire-- You are BRILLIANT. Mito is on the short list for what is the root of my problems. A Mito Specialist is on the list for the December trip and I have Docs here supporting that theory. Rich-- I will try and do that, I haven't figured out how you guys get it all in the signature without it being too many characters. I will try again in a few minutes.
  6. I have to keep this short because I'm plumb worn out, but I've had a tough week that was bearable until an appointment topped off Friday afternoon with pure confusion. Tuesday I had a follow up with my Cardio to let him know about my ER episode....outcome.... the ER did Nothing right....... bigger shocker. The Cardio is blowing things off and pushing things on other docs. Though he was shocked that I was passing out while laying flat during the episode. So he asked me to try Midodrine again as PRN since he thinks I might tolerate it better now that I'm on Cortef. He is agreeing with my other Docs to send me East to see Grubb and a bunch of docs at Cleveland Clinic. Rheumy appt on Wednesday that was 2 hours, much more productive, and surprising considering we had almost dumped this Doctor. Hmm the power of him thinking we were switching care. He had lots of ideas and wants to get me tried on IVIG. He was going to call a Mast Cell expert to make sure I will be ok with the IVIG. Fast Forward to Friday....... Hematology appointment..... let the confusion begin. Oh and I should say, last Friday was Thyroid Biopsy day.... test results today..... Benign...YAY but what happens to watch it??? The first time I saw this hematologist was in February before I saw a specialty Neurologist who did skin biopsies for Small Fiber Neuropathy, which was Positive at both sites. The opinion of the Hematologist before that, I'm going to call him Dr. B for ease, had the opinion that I fit the criteria for Polymyositis or some of other type of muscle disease and was sure the Neuro would do a Muscle biopsy. At that time he had ruled out Carcinoid because of the negative ocreotide scan. We were also awaiting a thyroid biopsy that he felt could cause some skewed results if I had thyroid cancer which was beleived because of family history and the type of nodule. Fast forward to now. The Neuro did not do a muscle biopsy he was waiting to do that maybe in the future. I had my thyroid biopsy which came back negative. I've had an AIRE gene test that is pending to look for MEN or APECED because my PCP and Thyroid Surgeon feel I have some form of Polyglandular Failure. I know this can kind of fall under the umbrella with Carcinoid. My Immunologist ordered the AIRE gene test. He is the one who initially tested my methylhistamine and prostaglandins and did the Chronic Urticaria Index. Based on the CU Index he said I had some type of mast cell thing going on but he wasn't sure how to classify it. This was in December of 2010. Fast forward again to a month ago. My immunologist had spoken with Dr. Afrin after I had emailed him about sending some colonoscopy tissue. Dr. Afrin felt by my labs and symtpoms he didn't need my tissue I had MCAS. He sent info to my Immune doc who called me in and said the CU Index showed the autoimmune form of MCAS where I am attacking and causing my Mast Cells to degranulate. We then ordered my Complement Levels and Further Eosinophil evaluation because my Eosinophils have always been high. My Eosinophilic Cationic Protein came back HIGH showing that something is causing my Eosinophils to degranulate into their toxic form. My Complement C5A came back HIGH, it's the most potent Analphatoxin and causes Basophils and Mast Cells to degranulate. Back to the Hematologist, Dr. B. He briefly looks at all the weird labs, and I mean briefly. Hears my story of my recent ER visit that easily could have been a Mast Cell Attack and anaphalaxis, or an Adrenal Crisis, or a Carcinoid crisis, or a POTS related episode. He skimmed the Primer from Dr. Afrin but wouldn't even look at my emails from Dr. Afrin. He looked at my Chromagranin A level of 47 which had not been done before. He said that level was normal. He then said to him this all seems Autoimmune and everything has to be tied together somewhere. This can't be 10 diseases that are seperate. I agree. He doesn't feel I have Mast Cell Issues or Carcinoid or MEN. He realizes my Platelets have always been a bit high that can happen with auto immune or inflammatory. During the ER however the platelets and WBC were high which concerns him more. So what's the answer........ he orders a Bone Marrow Biopsy!!! Fine, great, at this point I'll take anything, and at least if he doesn't beleive the mast cell thing he will have to look for it. I asked if he would look for mast cells in the marrow and he says in Bone Marrow they look for everything not just specific tests. So I feel he's ordering it for the wrong reasons, but at least my Marrow will finally be looked at for not only mast cell but for Mito issues that have needed addressing as well. His best bet after that is to send me to NIH. We've already figured this won't work for so many reasons and are planning the trip to Cleveland Clinic and to hopefully Dr. Grubb. How exactly does Carcinoid get ruled out over Mast Cell stuff?? Would my CU Index be high in Carcinoid? I know the Seratonin really points to Carcinoid. I will ask to have it redrawn this week along with Tryptophan as suggested. My Histamine has been high in whole blood but normal in serum and normal in urine. My insulin is strange in that the fasting level is always normal but during a 3 hour GTT it was always triple the high range. Over the past 2 years I've had Gastrin, VIP, Glucagon, Ceruloplasm, Calcitonin, and they've been normal. But I know things can change and they've only been tested once. I have had my Catecholamines and Metanephrines tested numerous times and they have always been normal. Though I haven't had the sitting and standing, lab here in not capable of that. My 5IHAA (I always get that wrong) has been tested 3 times I think and has tested normal. Prostaglandins and Methylhistamine just once at the same time as CU Index in December 2010. Tryptase 3 times I think, levels were 4, 6, and 7. As for imaging I've had the Ocreotide, a CT enterography, gastric emptying, Hida Scan, MRCP, abdominal MRI. The only thing that showed up was some weird fatty liver, and my gallbladder doesn't work. During a surgery last year they found multiple adhesions and fibrotic tissue throughout my abdomen of unknown cause. This was a hysterectomy and my pathology report was clean. So what rules what in or out??? I'm confused more than anything, and scared only of what they don't find at this point. I'm soooo sick and rapidly declining that I've reached the stage where I just want answers, I don't even care what they are. I'm more scared that they are over looking things because I'm so complex and they don't have enough time and they aren't expert enough to know what they are looking for. Boy I hope some of that made sense, I'm exhausted. I've cross posted a bit of this on a mast cell forum as well. I know some of this is off topic for POTS, but I know a lot of people here have Mast Cell issues and some have Carcinoid. I also found it very interesting that the Complement levels, especially the C5A cause Basophil and Mast Cell Degranulation and can negative impact on smooth muscle like heart function. Soooo any input????????
  7. Oh yeah all over the place. Careful on the BB's, I tried to take a 1/4 dose of atenolol when I was first diagnosed and after 2 weeks my bp was also low low low and HR was lower than ever. Now I take Toprol, only as needed when very tachy, a 1/4 pill. Only do this a couple times a month. I wore a month long continuous records monitor and my heart rate was from 42-137. Just recently did an overnight oxygen test. Wore the monitor for 10.5 hours. My oxygen dropped to 90 a few times, when my HR dropped. While sleeping my heart rate was 42-98. I don't have apnea so I know it's not that. That seems to go with how my TTT went. Rest HR of 63, after being tilted for 13 minutes my BP was 40/17 and HR was 117. They immediately dropped me, as I was just on the verge of pass out, and my HR shot back down to 50. My PCP has recorded me as low as 32 and as high as 176.
  8. I use 337.9 for everything. There is also no specific code for Small Fiber Neuopathy, Mast Cell Disorder, Chiari 1 Malformation, or a lot of specific Connective Tissue Disorders. hhhmmmm everything I have doesn't seem to exist in medical land.... LOL Can I join the Island??? You should see the list of dx codes my docs put on my work-ups they cover everything since specifically nothing has a code, there is usually around a dozen codes listed.
  9. Didn't think this should go on the main forum, but if it should be moved by all means to the moderators go for it. I posted here since I figured all the great minds might know the immediate answer. I was sifting through a quick envelope of very old letters belonging to one of my Great Aunts. Was actually looking for a picture. What I found was something very interesting..... Quick background.... My Maternal Grandmother was 1 of 5 kids, all girls. All had endocrine health problems. One passed away at an early age in 1945 of "unknown" causes. My Great Grandmother, who I could be her identical twin, passed away young too at the age of 52. Supposedly of Bright's Diseases, but now this note I found I am questioning. I've been trying to find out all I can about family history since we see a Geneticist this fall. So this little note was written by on of my Great Aunts, not sure which one yet. It states that in 1933 my Great Grandmother was taken to the hospital because her leg and foot were getting gangrene. She tested positive for, quoted "the horrible disease" and "all 5 children had to be immediately tested".... "two of us tested positive including me" this sister was 18 at the time. It then goes on to say that the 2 that tested positive for the "infectious disease" had to start treatment immediately. The treatment continued every 3 months for 3 years, after which they were tested every 6 months and this sister that wrote this letter said after her 3 year treatment her check every 6 months was clean. So...... any ideas on this mystery disease???
  10. Glad you are home and recovering. Have your hormones been tested?? On day 3 of your menstrual cycle.... Estrogen, LH, FSH, Progesterone?? If not I would ask them to check especially your Estrogen. It may all just be coincidence but it seems like so many of us here have/had horrible periods. Then some horrible reactions to Estrogen as well. Mine were horrible, pass out type pain even on high dose advil. They were never regular, some light, some heavy, I skipped a whole year when I was 16 for no reason anyone could figure. They tried me on BC when i was 17 and it made things worse. So they tried me on Prozac for PMDD, didn't help either and after a year it made me a zombie so they took me off it. I dealt with it until last year, my cycles kept getting worse as my POTS and other health issues got worse. So they started testing my hormones only to find that my Estrogen was always way under even menopausal levels. My Cardio and an OBGYN surgeon decided to do a complete hysterectomy last year thinking it might level out my POTS symptoms, since I was always way worse around my cycle. This was a big decision and kind of last resort, so I'm not advocating for the extreme, it was just the right decision for me. My surgeon was shocked to find my ovaries all shriveled up and I had cysts in my tubes, cysts in my ovaries, and a couple of small fibroids. They diagnosed premature ovarian failure. THey immediately started Vivelle. They wanted me to get my estrogen up to around 40-50 which is a good menopause level and get some of my bone back as I already have osteopenia. I did NOT have good reactions to the vivelle patch and it's supposed to be the most easily absorbed and tolerated. After 5 months even on a double patch they could only get my level of Estrogen up to 26 and it should have been over 100 for what I was on patch wise. A really good Bio Pharmacist had them check my SHBG which was very high and said I just don't absorb Estrogen for whatever reason..... very long explanation. I was told to try Nuvaring because it's so mild but it just wasn't worth it to me. I think my body had been used to low levels of Estrogen for so long that it didn't know what to do with more. I've been off now since November and I feel better than I did on the Estrogen. Not in any other way, in fact my POTS and everything else has gotten worse. But on the Estrogen I had rashes and itched constantly, horrible migraines, and was moody moody moody, I also had bad acne which I have never had a problem with even as a teen. So maybe I was allergic, or my Mast Cells hated it, I don't know. Even though my health overall is 10 times worse I don't think it really has anything to do with the surgery or hormones. I think all of my problems are just getting worse. The one thing that is better is at least now I always feel equal in how bad I feel instead of having 2 weeks a month where I may as well be dead. The swings from my cycle were just terrible. So I think you might benefit from the BC just be aware that there are A LOT of different ones to try and everyone reacts to each differently....which is why there are so many kinds. My only advice is to ask for your hormone levels to be checked first.
  11. No answers for the what or why......more weird stuff we have to deal with. I know this will sounds strange but if you can handle this with the nausea..... try swallowing a spoon full of plain yellow mustard.
  12. Well I guess I relate to most of this pretty well. I don't drink any more, except for one glass of Ice Wine on my Birthday, and I did have a celebratory Mojito after getting my SFN skin biopsy. It does seem to calm the nerves and relax everything..........but it's a horrible ending, the next 3 days are pure misery of dehydration, GI issues, and Mast Type feelings of itching from the inside out. So other than my favorite glass of Ice Wine on my Birthday it's just not worth it. I've never been a healthy person, issues since birth. I was never a drinker, even during those 18-21 years when most people get drunk at least once, I have NEVER been drunk!!! Something about losing control I don't like the thought of, plus I had a friend get alcohol poisoning at 16 and almost die. However I was a one cocktail on the weekend or during a special occasion person, usually a Blue Hawaiian or Mojito. About a year before I became too sick to work I got out of a very bad relationship with an alcoholic.....lets just say really really bad experiences all around. Because of that and watching him I immediately stopped drinking all together. After that about a year later when I got so sick I couldn't work I hadn't had a drink in about a year, and didn't have another drink until my 30th Birthday last year. So 3 years total with not 1 drink, not even a sip. So it probably means nothing just some big coincidence, and I was working a night shift and on call 24 hours during that year before I had to quit work but my symptoms actually got worse after I quit drinking all together. Probably more from the hectic work schedule than the no drinking, but I don't remember ever feeling really dehydrated or worse after my one weekly cocktail. Now my once yearly glass of Ice Wine practically kills me!!!
  13. Mine never makes sense. On TTT is dropped to 40/17 Normally at home it's around 90/60 when I feel horrible it's usually around 80/50 Recently as I've gotten worse the pressure has narrowed, so this past weekend when i felt really bad my pulse was 106 sitting and my BP was 84/69. And every time I go to the Doctor, I have white coat syndrome and it's 115/75 usually, pretty perfect, guess I should stay at the Doctors. Though then I would die of perpetual stress and panic.
  14. I saw the same Doc as Chaos.... and was deemed NON EDS, but only the hypermobile type. I know I have some type of Connective Tissue Disorder, but no I'm not hypermobile. Rather my joints slip in and out of place easily. Knee Caps are the worst, along with Rotator Cuffs, Fingers, and TMJ joints. My TMJ Dentist did just tell me that he thinks I'm hypermobile. I also am wondering about the vascular type because my skin is paper thin and you can see every vein in my body. I do have history in the family of aortic aneurisms. My Grandfather had AS and we believe Marfans or something like it. They found a congenital heart defect when they did a surgery, we don't know now what it was, so wish we could find out but it was too long ago. His Mother dropped dead from an Aneurism. Then there is my Mom who had SIDS, then Rheumatic Fever, then at 13 they thought she had appendicitis, opened her and found that her fallopian tube had burst and severed an artery, she was bleeding internally. She left that surgery with only one ovary. I bruise very easily, but I clot and heal fine. So I don't know.... maybe the geneticist I'm planning on seeing in Cleveland can figure it out. I do have Cousins with known Collagen malfunctions, but not DX of EDS.
  15. Yup immediate Migraines. Tried it for a week and determined no use feeling better if my head hurts so bad all I can do is lay down with my head buried a pillow. I've only been on Florinef since. I do have headaches but always had, so not sure the Florinef aggravates them or not.
  16. Hi All, Strange question I know......... Back in February my PCP ordered a Lumbar MRI because I lost feeling of bladder and bowel and my back and hip pain increased a ton. This was before my positive SFN biopsy that kind of explained all that. However the MRI came back and they say I have "Facet's Disease", early active degeneration of my facet's. So I'm wondering if anyone else has this, if it could be in the family of Connective Tissue Disease or EDS, or maybe even whatever AutoImmune component some of this has on us. They referred me to pain specialist for injections.....but I requested the Doc I saw after my Lumbar Puncture because he knows I have a Chiari Malformation and I know won't do injections. Don't see what good injections would do if they gave me a spinal headache for 3 weeks. So kind of off topic, but wanted to see if anyone had this as well. I am positive for HLA-B27 and my Grandfather had a very bad case of Ankylosing Spondylitis.
  17. I know the following thread is titled "High cortisol" but read it anyhow, there is low informtion there too. http://forums.dinet.org/index.php?/topic/20593-anyone-with-elevated-cortisol/ I have Low Cortisol but not Addison's. Addison's is caused by the failure of your adrenals. Adrenal Insufficiency is caused by your Pituitary or Hypothalamus not telling your adrenals to make Cortisol. The adrenal stimulation your Doc is talking about will tell the difference. The test is called an ACTH Stim Test. Ask for the low dose if you can, the following is a great article about all of it. The tests, the results, the diseases. http://en.wikipedia.org/wiki/ACTH_stimulation_test Hope this helps. Feel free to PM me if you want, I know entirely too much about this topic.
  18. My really bad episodes usually feel like food poisoning or stomach flue, but then they don't follow that pattern. Plus I'm usually not the only one that ate the food, so not Poisoning and usually nobody else gets sick either, so not the stomach flue. I went to the ER about 10 days ago for the first time with one it was the worst ever. I will try to write the whole thing up tomorrow and post when I have a bit more energy. I will say for now though that when mine start if my Mother is here or I have my wits about me and check my blood sugar it's usually low as is my temperature. Katybug-- Can you explain about the Abdominal Migraines??? How did they figure that?? And were you told why the Depakote might help the GI stuff???
  19. Katie here is my take...... If you can, have your PCP schedule an ACTH Stim Test..... LOW DOSE if possible. This might be hard to get covered by your insurace unless you have a reason and Doctors behind it. Otherwise......... Make sure the lab drawing knows what they are doing. Cortisol has to be drawn between 7 and 8 AM. Get an ACTH draw at the same time.......... but the only way it's accurate is if the tube is on ice prior to draw and immediately after, make sure the lab knows exactly how to run it. I had an infusion center screw mine up. Sue--- I would be in heaven if my ACTH was 50. 50 is good, means your pituitary is firing to make cortisol. My ACTH runs between 7 and 18. The range for our lab starts at 0........ problem........ you'd be dead. From all the reading I've done over 35 is optimal. Now back to Cortisol, mine is typically on the low side......... 4-18 and the 18 was during a full on panic attack after a 12 hour water fast....... not a smart move. I've had 2 Stim tests, one high dose, one low dose. They were both fairly in the gray area leaning towards a problem. It took my surgery and my cortisol dropping to 1 for everyone to realize there is a problem...., but it's not with my adrenals. My Pituitary is not stimulating, this goes along with what we are presuming is Polyendocrine Failure though. However I did a Saliva cortisol 4 times in a day test and it showed different. This was a couple years ago though. That test showed I was right at the top of the level at 8AM then at Noon I was LOW, then the other 2 readings were right above the low. My Urine cortisol is always extremely LOW, so who knows........my body switches things around on an hourly basis I think just for fun, I'm like the weather, if I don't like how i feel just wait awhile and it will change.... usually to something else I don't like.... LOL Here is my opinion on what else you should have run........ Ferritin Thyroid AB's Free T3 and T4 and TSH Growth Hormone and IGF-1 SHBG if you are still menstruating get Estrogen, Progesterone, and Testosterone.... LH and FSH.... run on day 3. Insulin and Glucose (fasting) and if you aren't on florinef..... Aldosterone and Renin (special instructions for testing though) oh and just for kicks, since I did and it got me a big answer.... Intact PTH with Calcium All of these will look at Endocrine function and especially Pituitary/Hypothalamus and how it reacts with the ANS Hope this helps some.
  20. My reply will be short, I'll add more when I'm able. Denial for me is sort of the wrong word...... to me it's more like is this an illusion or reality. I often ask my Mother that after a particularly bad day or appointment. She reminds me that not only does she watch me be ill on a daily basis but I've also had a Psych Eval and they would have found something if this was all a hallucination ) Really it's the worst when a Doctor says they are going to do something and they don't, or they write me off to another doctor. It's the worst right now after last Thursday my Mom had to call 911 from my worst episode yet. Told 2 EMT's, 2 Paramedics, 2 Triage Nurses, 3 Techs, 4 Nurses, and 3 Doctors what POTS/Dysautonomia was and that the episode started with my blood sugar dropping to 39, and then afterward I started passing out, 3 times in about 5 minutes. Unless I was lying flat on my side my vision was going completely black and my hands and feet were totally gone. I was disoriented and my Mom couldn't get me up so she called. In the ER my oxygen was low, a first for me. After 12 hours and 3 bags of saline, labs and xrays........after going through all those people I was deemed as having a Virus and dehydration and discharged home. Never heard a virus starting with low blood sugar followed by passing out...... but ok whatever, could have educated a lot of people but they all chose not to listen. I missed a biopsy and CT that were scheduled too and now I'm having the flare of all flares I think from the meds they gave with the saline..... Zofran, Phenergan, and Morphine. That puts me squarely back in my zone of "denial" or "illusion" or "this can't be real".
  21. LindaJoy-- I'm pretty sure actually that my little dog does know when my Cortisol is having troubles. She doesn't react the same exact way as she does for glucose but she becomes very clingy and annoying and won't leave me alone. This is during episodes where I'm loopy and disoriented and have back pain and I'm usually so cranky that I want her out of my space. This is usually when my BP and HR are really doing crazy things and the nausea is the worst. So I think she does know. Wish there was a home Cortisol test like blood sugar so I could check and see if she for sure does know. As for her size, I'm lucky she's that small because her cue for low blood sugar to wake me up is that she stats by sitting on my chest and when that doesn't work she literally lays down on my face......so I can't breath and I wake up. Not the ideal cue from a service dog, but she chose it. She was never trained just started clueing into me, we are very bonded. Took her awhile to get really good an consistent, and me awhile to realize what she was doing.
  22. I have a 9 pounder who detects my glucose levels being too low. She trained herself and has gotten so good over the past year that my Vet certified her. Laws very state to state and here we don't need a Doc to sign off, it's either a vet or a Doc. But I'm also on Disability so for the Americans with Disability Act I don't need to be certified myself to have one. I don't abuse the privilege at all though. Except for sleeping I deal with my glucose pretty well, it's just sleep time that I really need her. I wouldn't take her to say a Zoo, she's too easy to think of as "Prey". LOL I'll have to watch that video you posted sounds interesting.
  23. I'll chime in here. Those of you taking Tagamet, please do some googling and be careful, Cimetidine reacts with a lot of drugs. We beleive my Grandmother got acute pancreatitis from chronic cross use of xanax and tagamet. I use Zantac, don't have a problem with the dye......... but my Dog takes it too and can't have the pills (allergies), Ranitidine is available in Syrup form and it's pretty darn pure stuff. As for Claritin, I can't tolerate it.........causes major vertigo. I do ok with Zyrtec took awhile to get used to it. I take Hydroxyzine at night. I don't tolerate the tablets, I think I don't absorb them well or something. The capsules I do fine with. Now onto an MCAS realization, don't want to start a new thread, this one is sooooo good. My Doc here spoke with Afrin through email after I had and got some things clarified. My Immunologist was soooo excited he called me in for an appointment, plus he got another test approved (multi purpose appointments I like) Anywho........ A test he ran last year for MCAD at the time was a Chronic Urticaria Panel. Contained lots of stuff. Came back really high but all I saw was the over view not the components and didn't make sense since I rarely get actual hives. But my Doc said it but me in the gray zone for Mast Cell probs. Happy enough. Well yesterday he told me that one of those components in the panel that he had suspected got confirmed for him by Afrin. I DON'T have actual MCAS.......... My body is actually making auto-antibodies that are attacking my Mast Cells and causing them to degranulate which in turn in causing my high Eosinophils to degranulate into too much ECP as well which is both good and bad because it's a cytotoxin and destroys tissue cells but on the other hand i should never have a problem with malaria or west nile or things like that becuse ECP destroys them. Hmmmmm So my body is allergic to itself and is attacking what it's allergic too........speechless. He wants to try cyclosporine or something but will all my other stuff wants to wait and see if we can find anything else auto-immune. Treatment still the same........ H1 and H2 just a little different than actual MCAS.
  24. Huh....interesting, thanks Issie. Have any links to the stuff about too much Seratonin??
  25. TTT's are the Pits. I've had 1 and they will have to pay me big bucks to get on another. However it did cost me the POTS diagnosis for a year and a half. My Local cardio doesn't really believe in POTS unless you always have a heart rate over 80 or 90 and always an increase of over 30 bpm instantly. Literally his poor man's tilt at every appointment is a joke. Sit, take it stand and instantly take it then sit and do it again. never lie down. my bp is always normal or high at the doctors......... gee i wonder why, because they make me a nervous wreck. His staff put an EKG on me at every appt for 10 seconds after 5 minutes of attachig all the wires. 10 seconds will show what exactly?? My TTT lying down for 15 mintues my HR was 66 At 13 minutes in I started having major symptoms, they started at 7 minutes. At 15 minutes they had to lay me down just as I started to black totally out. My HR was only 115 from 66 but my BP had dropped to 40/17 as soon as they dropped me my HR plumeted to 50 That got me a dx of NCS and some type of autonomic dysfuction. Traveled out of state to a specialist who agreed. A year later I did a month long halter monitor, got results saying things were normal. Before going back out of state for a follow up I requested all the readings from the company that recorded the monitor. HR was anywhere from 40-135 with brady and tachy and arrythmias. My local cardio said this was normal. My Specialist took one look said he didn't care what my local beleives, I had POTS, not typical POTS but pots. I go Brady almost every night and sometimes during the day and 135 for nothing more than a stroll here and there is NOT normal. My PCP does great orthostatics at every appt and has recorded my HR as low as 32 and at home its been as high as 167 I finally have a small fiber neuropathy diagnosis which seems to have gotten my local cardio off my back for the time being. now he's on the bandwagon of, well that's whats causing all the problems. Honestly I like him and he's the best one here, though he could be better. But I zip it because if I ever have a heart attack I would trust him more than some others around here. Hang in there. sorry for the bad grammar and typos i'm beat.
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