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morgan617

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Everything posted by morgan617

  1. I haven't been able to turn my head to the right for at least 15 years, so get a lot of stuff from that. It gets much worse at times for no apparent reason, but then settles down. I have moderate degenerative disease with impingement and spurs and impingement of the vertebral artery. or something like that. i just know it can sure make me feel crummy. I never take pain meds, but hope upping yours helps. Good luck. morgan
  2. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No 2. Have you ever been diagnosed with EDS or suspect that you may have it? No, stiff as a board most days 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? yes 5. Have you ever been informed by a doctor that you have low blood volume? yes, but the booger wouldn't document it because he said his peers would think he was crazy...grrrr 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? oh yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? all the time 8. Did your POTS arrive suddenly? no, don't ever remember not having it 9. Is your skin pale? except for rashy face 10. Please the top 6 worst symptoms that you experience with POTS: surges, fatigue, lightheadedness, visual disturbances, stomach problems, arrythmias
  3. I would like to say there are some people who have gotten better and left the site, because their lives are back on track. Unfortunately, they are not the majority, and I'm not sure any of them could ever really tell you the why's or how's of what did actually make them better. If I got rid of this stuff, I'd miss you all, but I wouldn't be here, I'd be out living. When I got the ablation on my heart, it about killed me off, because that was the only thing helping me too, but I have changed or evolved or something. I have to have betas, because my BP goes sky high, it doesn't drop. I am tachy all the time without betas, but the betas also exacerbate huge drops in my heart rate, so now I'm stuck with a pacer too. My problem has never been a fast heart rate that helps keep my pressure up, but a really high bp and heart rate together. As far as recovery, it's been thrown around for a long time that teenage girls that develop this at puberty have the highest success rate for recovery, so it would have been sort of a no brainer for anyone versed in pots. This is NOT to say all young women get better, so no misinterpretations, eh? We all get tired of this I think, the cure is always right around the next corner...if only. morgan
  4. Lots of people don't use these things. More don't than do. Some of us just reach a point where there's no other choice. So don't worry yet! morgan
  5. I am so cold intolerant my house is set at 78 all winter, well into the spring. However, direct sunlight makes me sick as a dog...go figure...morgan
  6. This is quite the interesting thread! I was looking to see where drguest started the ssri thing and couldn't find it. I think some signals have been getting crossed, but can't quite figure out why. I have never been to Cleveland, vandy, mayo, NIH, or any big place with lots of specialists telling me all kinds of stuff. I do go to a great pcp that says he's certain I have baro reflex problems. You don't give meds that raise the BP to people with really high BP's, period. Whether it's constant or they spike all the time. Mine started out sporadic and then just got stuck up there, with the surges and flushes and all that swell stuff. So, I have never taken midrodine or florinef. Seems simple to me. I do not tolerate antidepressants, they always affect my heart, no matter what the reason is I'm taking them. So I don't take them. I do take a relatively small dose of atenolol, which helps control the surges and BP and heart rate, although I ended up with a pacer (they feel may well be due to damage from the ablation I shouldn't have had) which causes fatigue, but no apparent mast cell problems on my end. I do think I get the gist of what you were saying dr guest, but I'm just not not up on the big word explanations, and maybe others might have the same problem. I frankly don't really care which kind I have, I just know my doctor's going to make choices based on symptoms and not the "type." It hasn't killed me yet, so I'm good with my treatments so far. What I can and can't take really shouldn't apply to anyone else, as we all know this crap can be as different for people as it can be the same. I appreciate everyone's input, but in the end , it comes down to what works for YOU and what doesn't. if you feel better or even the same, it's either working or not making any difference. if you end up in the ICU, it was obviously not the best choice and should be avoided. Simple and complex as hello...simplemorgan
  7. Jake can't get his fingers within 38 inches of the floor, no hypermobility there! As far as "burning itself out" haven't heard of that one. it does happen with Rheumatoid, but that is a completely different type of arthritis. Many people assume jake has rheumatoid, but actually it's the explanation for the sero negative part of sero negative spondyyloarthropathy. No rheumatoid factor. I've had a dx of Fibro since about 25 or so. I never ever bring it up, even though I believe it does exist and they are now finding some tests that actually do show some abnormalities. I believe some day it will be as legit as MS and other illnesses that are blown off as neurosis. For now, it is definitely used as a garbage can diagnosis for many befuddled docs, when you don't fit your round symptoms into that square box of illnesses. Jake just went to the doctor, he's having so many problems with floaters. My personal theory and lets face it, we all have one, is that the autonomic system is actually very fragile and so many things can upset it, and throw it off, that for as many illnesses as there are, there are reasons for autonomic dysfunction. It's such a control freak system, that anything that bumps it, sets it off. I think of it as a by product of the real thing that's going on. I know there are people on here that only have POTS and no other diagnosis, so I guess that means it sometimes has OCD and goes out of whack for no reason. Not trying to be funny, unless that makes you laugh, but it makes perfect sense to me. When the bowel is messed with in surgery, it just flat out stops working for awhile, whether you were actually working on it specifically or just moving it out of the way. It will eventually get itself going again, but the autonomic system seems to be a bit more stubborn. There are very few people on here that don't have other problems besides POTS, so I just think of it as a secondary illness. NO less awful, just caused by something else that sets it off. Or the vice versa, Why? who knows, why do some people get exposed to HIV and not get it and others that are careful do? Sometimes we just don't have the answers. morgan
  8. Here's some info: http://my.clevelandclinic.org/disorders/sp...y_overview.aspx It should shed some light, I hope. I'm pretty sure mine is hyper too, as is my doc. You can actually watch my jugulars get extremely engorged and my neck turn scarlet as my BP doubles over a few minutes. I hate it. I sometimes feel like someone has there hands around my throat squeezing. Gross. Jake gets tons of floaters, he just saw the doctor for them and was diagnosed with ocular migraines, besides the regular ones he gets. His AS never goes into remission, but it may be because it started at such a young age. It generally occurs from the late 20's to early to mid 40's. The rheumy probably didn't know what to do for you, because there is really no treatment, but he does sound a bit weird. You can also get it in other joints. jake's started in his feet. Every single joint in both feet. Now, his feet get sore, but his back gives him the most trouble. If that site doesn't work, just google spondyoarthropathy and you'll get a ton of hits. morgan
  9. My weight gain protocal isn't anything like yours. Mine consists of falling off a chair, breaking a shoulder and 3 ribs on my dominant side of course, then being pretty helpless for several weeks, and pretty completely inactive. I gained over 20 pounds from that and have never gotten back to my baseline activity level, which was not much to begin with. I could manage one squat and then hubs would be lifting me off the floor and I don't think that counts. Keep it up as long as you can! It's great that you can exercise as much as you do. morgan
  10. I am glad you are ok, even though suffering the after effects. Although a lot of people actually feel better in the water, I have never had any stamina for it. I don't think I've ever been able to swim a lap in my life. The really crappy thing about POTS is that what works one day can just about take you out the next. I hope if you try it again, you have someone with you, that's pretty scary! morgan
  11. Thanks flop! My transport chair is the traditional, except all the wheels are very tiny. It folds up into very small places. My power chair comes apart, but it's a pain. I wish I could propel myself. Sometimes when out I will use my feet to push muself, but that about causes a faint too..what a weenie. They have so much neat stuff now to help, it's too bad it costs so much, though! morgan
  12. I always thought Jake's POTS got worse because of dehydration from vomiting with his migraines. He doesn't eat or drink anything and throws up a lot, which of course will exacerbate tachy and BP problems. Guess there's more to it. morgan
  13. I've tried every BB known to doctors. Finally settled on atenolol, but started at a peds dose, and still take a low dose, relatively speaking. I still get fatigue on it and have been on it for about 10 years now. But there's just nothing else that gets my heart rate down. I had a cardiac ablation in 2003 and now they think scar tissue has affected my rate, so I take the atenolol to keep it lower than 100, but had to get a pace maker to keep it above 25, which it started dropping to on a regular basis. Not compatible with remaining upright. Anyway, inderal was a real killer, as was just about everything. I figured I would just deal with the fatigue of atenolol and so I have. good luck on whatever you do...morgan
  14. Aussie guy...LOL, I just read the other post. Does this say anything about the fog I'm surrounded by...LOL. Sorry about that. The gene is HLA-B27. It doesn't guarantee people are going to get the arthritis, but about 100% of people that get this type of arthritis have the gene. You want info, sweetie, I've got it all, my kid's been sick forever and I've been fighting the system for him forever. I wasn't excited about the TNF's either, but 70% of juvenile onsets end up with joint replacements by age 30. He's got one hip that's pretty bad. I refuse to let him go the remicade route, it's way too intense, but there really is virtually no specific treatment for AS besides TNF's. It sounds like you may have gotten the infectious type with such a quick onset. There are 5 different types, but just about any of the symptoms can overlap. Jake has had iritis just once, but it wasn't any fun and I do worry about his aortic valve, which is sometimes affected. What I really wanted to mention is that although other symptoms occur besides the arthritis, they don't always correlate, or happen at the same time. Sometimes jake's gut will flare but his arthritis will be a bit quieter, so they don't seem connected, but most definitely are. Another instance with the psoriatic kind. You can have horrible fusion, and barely any skin problems, or the other way around, or both years apart. Just another weird disease. nantynnnie, for a very long time no one believed women got AS, just like they one day realized more women die of heart disease than men, but only men could get it. They are discovering more and more cases of AS in women. it is genetic and familial, so why they would think that is beyond me. I always thought Jake got his POTS symproms from me, but I guess it's a coincidence, or he just had no chance between his dad's gene's and mine. We have a cesspool, not a gene pool..good grief. morgan
  15. Ramakentesh, My son Jake developed seronegative spondyloarthropathy at age 11. He's 27 now. His SI joints are already fused and he has fusion in his sacral and lumbar regions, with a lot of squaring of the vertebrae. He has crohn's that goes along with it and endocrine problems. he's been on steroids, NSAIDS, and is now on Humira with no real improvement. he is at the age you typically start having symptoms and it's already been almost 17 years. he has no memory of ever not having pain. He is very prone to tachycardia, lightheadedness, and has very low BP. I am very sure he has POTS, as do I, although he got the HLA-B27 gene from his dad. That was a very interesting read! Will bring it up with his rheumy next visit. He's had one for a very long time! Humira is supposed to be good for slowing progression, but he's having no luck. If you have AS, you probably should be seeing a rheumy. Good luck! morgan
  16. Julie, I am so sorry for your loss. As major dog lovers who have lost many of them, my heart goes out to you. As you can see I still have Chloe as my avatar and it's been 2 years. You are in my thoughts. hugs morgan
  17. Hi you, tried to send pm, your box is full girlfriend! No other way to contact you. I will pm when you let me know it will go through. You are a social butterfly!!!!
  18. I could never do the salt thing. I have meneire's and hyperandernergic, so my BP is typically sky high. Lot's of meds to keep it below stroke level. There are just a million theories out there and I don't begrudge anyone trying anything they think might help. Been there, done that. We just have to realize that what helps some could well be lethal to someone else. It's never a bad idea to throw theories out there, as long as people are in tune enough with their bodies to know if whatever someone is talking about will cause even more damage, or might help. Gary, you are very careful to say that things should not be under taken without discussing it with your doctor, and that is appreciated, however I worry about newbies, who may see things as the miracle cure they have been looking for, and being very frustrated by doctors, do something that may be harmful, because their doctors don't listen, everyone thinks they're crazy, whatever the reason.. There are just going to be people who are not going to heed advice about getting advice. I have tried about a zillion different treatments and have discussed my responses, but am also very careful about telling people that they are MY responses and they don't mean a hill of beans about how anyone else will respond. What may help one person can really hurt someone else, and vice versa. I have been amazed at the amounts of sodium people can put in their bodies on this site (does Addison's ever enter your mind when you see how much sodium people can use and in fact, crave?) If I take in more than 800 mg of sodium a day, I am in huge trouble because of a different illness I have. But I take 160-180 meq of K+ a day just to keep my K+ level at 3.5 or 3.6. Being a nurse, you know that for an ordinary person, that is potentially a very lethal dose. So, it's very different for all of us. Even those of us who just try to get through the day to day trials of living hope there will soon be break throughs, but we have been down a lot of roads, thinking it's "the one." I don't know a lot about lyme, have never been tested and don't know how much many on here know about it. But for those who have been taking oodles of sodium for the 6 years or so I've been here, the best I've heard them say is it helps keeps them upright a little longer. Lyme well may be your trigger, but I believe there are about as many triggers as theories, and as many theories as treatments...etc and etc. and some days I believe it's just one big cosmic joke someone is playing on me. I do hope this is YOUR answer though. I watched your You Tube views, nice to put a face and voice to people, and found them interesting. I would, however, like to know where that gorgeous shiner came from????? Sometimes the topics that start out quietly enough can become "hot topics" but we are all adults here and must respect everyone's input. Whether we believe it or not. I'm an old cynic, who long ago gave up the notion that there is a "cure" for me, but I would like to think there is one for everyone else! evertherespectfulmorgan
  19. Hi Maggie, I am 54, and diagnosed in 2001. There are more oldie moldie golden gassers here than you'd think...lol, I hope I am not the only one that remembers that term of endearment! morgan
  20. Tea, well said! I'm an oldie like you, I can not ever remember a time of not being sick, and have wasted too much time trying to figure out the why's and not enough just learning what works the best with me. There was a time I felt like you, gary. I wanted to study everything and figure it all out. But in the end, all I figured out was that I was wasting time. Figuring it out is what the researchers get the big bucks and grants for. And much of the time they don't agree with each other. Which is fine. it's like this discussion, we all have our opinions and thoughts and no one is right or wrong, it's just our opinions according to what we have studied, read about, who we like , what symptoms we have, what tests we've had, who we trust and who we don't, and where our priorities are at the moment. I have gotten too sick to wonder about the causes anymore. My time is better spent on what improves my quality of life day to day. I now spend my time figuring out what makes me feel better and function as well as I can, for as long as I can. I have had a pretty fast progression of this in the last few years and do not feel there will be any big answers in my life time. My son has had AS for 17 years and his is NOT mild, but so far his POTS symptoms are minimal and hopefully will stay that way. (I am speaking to the Aussie here, sorry I can't remember your name, red faced) This is too complicated for me to try and figure out what works best for me, let alone what caused it. I have changed a lot over the years along with tea on this. My priorities are far different than they were 5 or 6 years ago. But the discussions are interesting. morgan
  21. Hi Emily, I have a very light transport chair for when I go out and about. I don't have the strength to push myself anymore, so it has 4 tiny wheels and fits in our Yaris. Which is a very tiny car! I use my power chair around the house, which is much larger and far more complicated. It used to fit in our Neon and Dave says it will fit in the smaller car with some effort, but since I can't move myself, it's pretty much a moot point. If I have to be pushed, and therefore never go anywhere alone, there's no need for the power chair outside of the house. Since I paralyze, not faint, Dave is way too concerned I will do it in the middle of an intersection and just be stuck there, so the big chair doesn't go outside anymore. The tiny one is 15 pounds. It is a life saver. I really don't understand the rigid part and stuff that you guys are talking about. My chairs are both pediatric size. My little one only cost about 200 bucks and we've had it 4-5 years, but the power chair is another story altogether! Hope you find the perfect one and of course the right colors! Mine is red hot cherry...zooooom. morgan
  22. Son, 27 might like to have guys to chat with. morgan
  23. My son gets a med for his gut from Canada through his doctor from a reputable pharmacy. You have to pay in advance of course, but your doctor can fax a script and meds not available in the USA are not illegal to get. If a drug is available here, it is illegal to get it from any other country, doctor or not. If your doctor is familiar with the drug, they should know how to get it for you. Of course it would also depend on whether Canada has it. Good luck! morgan
  24. We have to be very careful when weaning off stuff. But even not weaning off stuff, I used to get those rushes. My BP would double over a period of just a few minutes and my pulse go up, I would feel flushed and my neck would feel like it was engorged, and I'd have neck vein distension. I didn't feel panicked, but I couldn't sit still, like the heebie jeebies sort of. I had to just wait it out and it sucked. Since I've been on betas, I still have them, but not nearly as bad. They just come out of no where and last about an hour. Oy, I hate them, but I just keep telling myself the body can only be that jacked up for so long, it can't sustain it. I actually have no idea what MCAD is, I'm not sure it was discussed much when I was here all the time. I am assuming it's some kind of mastocytosis? Gary, I have a friend who's hubby has had Lyme twice. He took six weeks of antibiotics each time and fully recovered. I know that lyme can cause irreversible neuro damage if left unchecked, so was wondering if you knew how long you had it before you got treatment. I guess some doctors give meds for much longer than six weeks, but is that still controversial? We do not have much of a problem with it where I live. I've had problems my entire life, so can't blame it on lyme. Just curious. Thanks. Anyway, without Lyme, I have the same surges. morgan
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