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Everything posted by sugartwin

  1. Well, if you had pains that were called 'growing pains' as a kid and felt much worse to you, you might have EDS or some other connective tissue disorder. Lots of guys with EDS have long, thin lanky frames and trouble putting on weight. They also tend to have low testosterone; the two might be connected. As far as I know, low body weight (in and of itself) doesn't cause dysautonomia. I suspect half of Hollywood would be bed-ridden by now if it did.
  2. There is definitely a kind of seizure that is associated with dysautonomia. I think maybe the man on MD had a problem with his heart that interrupted blood flow to his brain, causing the 'seizure.' Due to damage to nerves or an otherwise dysfunction autonomic nervous system the same interruption of blood flow is possible, only this time due to dysfunctional blood vessels rather than an electrical problem in the heart. Last year I was hospitalized many times for 'seizures.' Since they weren't epileptic, I had more psych consults than I could count. I kept trying to explain that it was clear that it was a neurogenic problem, and they kept sending me social workers and doctors who asked if my parents had beaten me. And they refused to do anything about the seizures; I'd be having one and there'd be some guy sitting next to me stroking my hair (or trying to) and telling me it was okay, the bad things was over now and couldn't hurt me anymore. I was conscious during these episodes and if I would have had control of my body I would have slapped him. To get to the point of the issue, I finally had a doctor who ordered a Tilt-EEG. They tilted me and wired me for an EEG at the same time. Around the 40 minute mark I had one of my 'seizures.' That's when it was ruled a version of convulsive syncope and no one doubted me again.
  3. I've had them before. They are seldom if ever useful in diagnosing dysautonomia because the smaller fibers that are responsible for the function of the autonomic nervous system are not tested by nerve conduction tests. Only the larger fibers that are responsible for voluntary movement can be tested this way. A related condition maybe, but only if that condition involves damage to the larger fibers. At the moment I can only think of diabetes, Guillain-Barre Syndrome and maybe its longer-lasting cousin CIDP that would damage both kinds of nerves, thus causing dysautonomia AND showing up on a nerve conduction test.
  4. Hi, Jodie and welcome. I think you'll find quite a few of us on the forum who have both Hypermobility Syndrome (or Ehlers-Danlos Syndrome, prevailing attitude is they are the same disorder) and POTS. It's a fun combination of disorders, never a dull moment. But yes, there is a MASSIVE correlation between the two. One study found that 78% of people with hypermobility syndrome displayed some form of autonomic disruption. As to why, there is no consensus yet. The three major theories seem to be: 1. Abnormal connective tissue in the veins causes them to stretch when people assume the upright position, thus allowing blood to pool and causing a reflex tachycardia. 2. Patients have unstable spinal columns which allows the brainstem, which is the 'control center' of the autonomic nervous system, to be compressed when in the standing or sitting position. This is effectively a kind of Chiari Malformation, which even has its own name, the syndrome of occipitoatlantoaxial hypermobility. 3. Patients have abnormal connective tissue in the small un-myelinated nerves that control the autonomic nervous system. This abnormal tissue is either attacked by the body as foreign or weakened by nature of its flawed design. Over time, autonomic dysfunction occurs. Personally, I tend to lean towards theory three because patients with other connective tissue diseases such as osteogenesis imperfecta (brittle bone disease) and Marfan Syndrome also are prone to dysautonomia, although not as prone as we are! I have a HUGE file of medical journal articles which discuss the relationship between EDS and POTS and other forms of autonomic dysfunction. I can e-mail them to you if you like. Most of them were free, some of them were accessed using my grad school's (admittedly crappy) permissions on medical databases. Some of them I just bit the bullet and paid for. You can use PubMed or Google Scholar to pull up all sorts of abstracts from various studies.
  5. Hi McBlonde, I had labile blood pressure: low at times (as low as 40/30) and high at times (as high as 160/131) I think it was contributing to a lot of my symptoms, especially my headaches and my exhaustion (yet complete inability to sleep.)
  6. Lyrica has been a dream drug for me. At first I was given it for 'severe fibromyalgia' but it didn't help the pain one bit. What it did do was stabilize my blood pressure, get rid of my excruciating headaches, give me a large chunk of my energy back and help me to fall asleep at night all at the same time. After I learned that it is taken for small fiber neuropathy and I had EDS along with that I thought it explained a lot (though maybe not everything.) Moreso even than Florinef, it has been a "normalizing" drug for me. Whatever the very heart of the problem behind my autonomic disruption is, Lyrica hits at it. If it is going to help you, I think you'll know within a work or so. Either your body will adjust to it and you'll begin to feel better, or you'll stay in the 'drunk/drugged/zombie stage' in which case something else would be better.
  7. I have Classical-Type EDS and I'm fairly sure my pain is unrelated to my POTS. I had little pains all my life; because I was told I was normal, I assumed it was normal. Then certain joints (my hips, namely) started having pain attacks. Then little aches began elsewhere at the same time that my hip pains grew worse and more frequent. There is no norm, as far as I know for EDS pain, except that almost all people have at least some, and as time wears on, some always become more. I wasn't sure from your post...have you already been diagnosed with EDS? Or have you just had someone observe that you're hypermobile? Either way, finding an EDS specialist is worth it. I think the percentage is something like 96% for people with EDS having pain. I really don't buy the anti-narcotics hoopla, possibly because it was so long before anyone took medicated the severe pain that I had that not only did I not turn down the narcotics I was offered, I literally cried in thanks. Addiction is bad, but I can also say with authority that human beings were not made to be in pain day in and day out, without ceasing, except for whatever moments of sleep can be snatched.
  8. GARLIC. Stay far away from garlic, especially fresh garlic. It's a godsend to people with hypertension (maybe it would help people with hyperadrenergic POTS?) but just a sauce with two cloves of garlic added to it lowered my blood pressure enough to send me to bed for the rest of the day.
  9. I'll commiserate with you, persephone. I'm angry that my body hurts all the time. That I can't get my Ph.D. That I can't teach, which was my dream. I feel I've lost all sense of purpose and direction in life. I was an adult, not yet married, but out of my parents' household. My illness intimidates my friends and I often feel that there is no one 'there' for me. I'm very, very lonely. And bankrupt. Can't forget those medical bills.... Before I got sick, I thought that I could accomplish anything I wanted with will and intellect. Nothing seemed off-limits or too difficult for me. But now I know that all the will and intellect in the world can't make a doctor give a **** about me. I can't even pay them to care. The answer to the question. what has POTS stopped me from doing, seems to be 'everything.' Or at least, everything I really enjoyed or wanted to do. This sounds awful and depressing, but it's nice to be able to rant it all out.
  10. I'll be frank. This sounds like Ehlers-Danlos Syndrome (EDS) to me. Especially, the feeling like joints aren't in their proper position (they probably aren't.)
  11. Ah, that's funny because platelet dense granule deficiency is rumored to be what causes easy bleeding in Ehlers-Danlos Syndrome (EDS) it really makes sense if you consider then how prone people with EDS are to dysautonomia. So low serotonin is behind both inadequate vasoconstriction and inadequate blood clotting. Fascinating stuff.
  12. Read a little more about each condition and see if anything pops out at you. Narrow it down. Look for something that doesn't seem to relate to your POTS exactly. For me, I had excruciating joint pain that my doctors couldn't explain except to tell me I was drug-seeking or that I needed a psychiatrist. Because I was told this by a doctor who specialized in POTS, I knew it wasn't a typical POTS symptom or she would have seen it before. I knew there had to be something else. Of course, the best thing to do is find a doctor who is interested in discovering POTS causes in their patients. But these are few and far between. People are born with EDS, so think back to your childhood. Lots of weird injuries? Clumsiness? Growing pains that were really painful? Stuff that seemed just plain weird? It would be a rare doctor who agrees to rule out EDS, MCAD and mito. You probably have to narrow it down yourself some.
  13. Well, the short answer is no. There are forms that don't require much flexibility like nmorgen said. And then, you can be hyperflexible without knowing it. I didn't think that I was all that flexible until I was formally and thoroughly tested, and found to be a 7/9 on the Beighton Scale (which measures hypermobility.) You can also lose hypermobility as time goes on but still have EDS, if you were hypermobile when you were younger. I don't think I'm explaining this very well. If you have other symptoms suggestive of EDS, it's worth getting evaluated by a geneticist even if you don't think of yourself of hyperflexible. Let a doctor decide.
  14. A lot of different autoimmune diseases can lead to POTS. I think the most likely suspects are Diabetes (type I) Guillian-Barre, Coeliac, Multiple Sclerosis and Lupus. It's difficult to know whether progression of symptoms indicates an distinct underlying cause. Since treatment for POTS is haphazard at best, it might just mean that an ideal medication or mix of medications hasn't been found yet. A prevailing theory is that POTS kicked off by a virus is autoimmune in nature, so if you haven't been checked for the AChR (acetylecholine receptor) auto-antibody, I would start there, especially since you've been getting worse. I know what you mean about being your own doctor. I've been faced with profound disinterest all around. Doctors want something to treat, and they want that something to respond to their treatment. It's so frustrating to deal with a doctor who just isn't 'into it.' Should you end up going to Cleveland, I'd recommend Dr. Chelimsky. On the first visit, he runs a panel of tests to look for common (and uncommon!) causes of POTS, right down to things like mitochondrial disease. He looks for the cause of POTS symptoms as a matter of course, which is the way I feel it should be.
  15. As was said, there is no real consensus on subtypes of POTS and it doesn't really guide treatment all that much. However, I do think it's worthwhile to try to find out what's causing POTS. It's not common but for people with some disorders, treating the underlying cause can greatly ameliorate or even reverse POTS. For instance, autoimmune causes can be treated with medications like IVIG and steroids, mechanical causes like Chiari can be surgically corrected, etc. I know I was very happy to be diagnosed with EDS, because before I was I would have awful attacks of pain and my doctors kept saying, well POTS wouldn't make your hip hurt...POTS wouldn't cause your hands to hurt... and so on. I was always being accused of drug-seeking and/or addiction. Even though EDS has no treatment, it was necessary to get diagnosed in order to have the rest of my symptoms treated. But as far as my POTS symptoms, treatment didn't change.
  16. If you really feel like you're only a few millimeters off or what have you, I really would leave it up to the doctor. People with hypermobility type tend to lose flexibility as time goes on, such that it becomes more important that you have the history of being able to perform a certain manuever, even if you can't do it presently.
  17. That can be the difficult part, depending on how receptive your PCP is. If he's receptive I would recommend you print out and show your doctor the GeneReviews article here: http://www.ncbi.nlm.nih.gov/bookshelf/br.f...e∂=eds3 It talks about the Hypermobility type (no stretchy skin necessary), and discusses the relationship between it and autonomic disruptions like POTS and NMH. It also clearly outlines the major and minor diagnostic criteria. Classical and Hypermobility-type EDS are clinical diagnoses, arrived at by observing the patient and taking their family history. There's no complicated or expensive testing involved unless it's to rule out vascular type, which is life threatening, but also a lot rarer.
  18. See a geneticist, preferably one with a specialty in connective tissue disorders. I really wouldn't bother with a rheumatologist unless they specifically treat EDS.
  19. Forgive my frankness, but I wouldn't entertain or pay any doctor who said something as condescending as 'you're not really sick.' And even if he does speak English, he's not making very much sense. He thinks you're genetically programmed for intense exercise...based on what? He thinks you're oversensitive to norepinephrine...based on what? POTS has many, many different causes. How many times did he see you before coming to this grand conclusion? Where's the backup for all these statements he's making? And which is it? You have POTS because you're oversensitive to norepinephrine, or you have POTS because of abdominal pooling? Or both? Where does the diet come into it? To me it sounds like this guy has a pet theory (a couple pet theories maybe) and would like you to do some free-of-charge vetting of it. If you don't get better, he can always say you're not exercising hard enough. 45 minutes of daily intensive cardio is a LOT.
  20. I didn't know people usually gained weight after eating a lot of sodium. Water weight, maybe, from retaining extra fluid? In any case, I never gained any weight from increasing my salt intake. I weigh within five pounds of what I did when I started increasing my salt last year.
  21. I can relate. I have endometriosis too, but the diagnostic laparascopy (much less invasive than a laparatomy) and the subsequent continuous birth control I went on really weren't a huge deal. There were some complications during the surgery related to my POTS. I had to get multiple shots of ephedrine to keep my blood pressure from crashing and I lost oxygen saturation at one point. And the BC caused a flare up in my EDS symptoms by making my joints more painful than they already were. I have to say your symptoms sound like endometriosis to me too. I had a huge problem with bladder pain and constipation before I got the implants removed. I also have low ferritin and have been trying to get an iron infusion for quite a while. The first hematologist I saw had bizarre hours and then when I finally got in to see him, he wanted money up front. Now I'm looking for a different hematologist. I'm really eager to have it, because I can't take iron pills due to stomach issues and I think my low ferritin might be why I have such low energy levels. I know how it is to have doctor fatigue too. Good luck!
  22. I'll be there as well! I think we should all meet up. I'll be staying at the same hotel too. I know the ring splint people will be there, and I'm looking forward to being sized. I can't wait to hear all the information that will be presented. Maxine, I've heard lots of good things about Dr Henderson.
  23. issie, you're a better person than I am. I don't mind if doctors don't understand my conditions, as long as they admit this upfront. More often, I run into doctors who don't know anything about EDS, know they don't know anything about EDS and then try to act as if they do to save face. They invariably get the facts wrong, then get insulted when I correct them. I'm usually told to "get a job" before the end of the appointment, and then the bill comes in the mail Overwork and even ignorance are understandable in a doctor. It's the outright cruelty I can't stand. My doctors have insulted me to my face, called me names and accused me of faking. My grandmother had EDS as well, and when doctors couldn't find the reason for her symptoms, they committed her to a mental institution. Fifty years later, in the same circumstances, my doctors threatened me with the same thing. Well, actually they gave me a choice. Leave the hospital of my own volition, or be committed. Normally people being discharged are given a cab voucher, but since I was a suspected malingerer, I got to walk the mile and half home. I spent the next two weeks bedbound. My father had to travel 300 miles from Cleveland and do everything for me from cooking my meals to combing my hair. That trip to the hospital cost $31,000, and that was the pathetic outcome. I don't forgive as easily as some do. I am angry. I am angry every single day. I don't mind being angry though, it keeps my blood pressure up.
  24. Chaos, I think it would. In fact, I think that any of the contributors to POTS, if severe enough would lead to circulatory collapse and ultimately death. I have a friend with autoimmune autonomic neuropathy who sadly, is losing her life because of the extent of the destruction of her autonomic nervous system. I've also read an account of a man with severe hypololemia secondary to CFS/ME who went into circulatory collapse.
  25. The only reason I speculated that such a combination might be life-threatening is that I have both EDS and small fiber neuropathy and the combination of the two has threatened my life a couple times: once while I was in the process of being admitted to the hospital and again on the operating table. I was always told multiple times that POTS itself wasn't life threatening, so I wondered if having two factors contributing to my dysautonomia might be why the things that happen to me happened. Or then again, I wonder if might have even been some other factor. Long story short, I had two near-death situations that no one was ever able to explain to me and it bothers me a lot. It seemed to be that someone who had both a substantially low blood volume and an additional problem with vasoconstriction would be at risk of circulatory collapse, which is what happened to me twice.
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