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NMPotsie

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About NMPotsie

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  • Birthday November 14

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    Female
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    Las Cruces, NM

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  1. A friend of mine was recently (finally) diagnosed with obstructive sleep apnea. Prior to his dx, doctors suggested he had a pheo (he was dxd with pseudopheo) due to high levels of urinary cats. His doctor later explained that the oxygen deprivation from sleep apnea causes increase cats and even "surges" similar to what some of us hypers experience. I'm no doctor and I don't understand some of this. For those of you who are medically more skilled than I, my question is: could oxygen deprivation play a role in the hyper episodes that some of us experience? could some hypers have obstructive sleep apnea? the symptoms look similar to me. For the record, I was monitored for this and didn't have it, but I wonder if cerebrohypoperfusion could lead to these surges. Perhaps this has been asked and answered. If so...my apologies. Here is a link to the article his doctor showed him: http://www.nejm.org/doi/full/10.1056/NEJM199003293221314
  2. I was dxd hyperpots at Mayo and also hypovolemic via sodium and eventually blood volume testing. I don't know a lot about it, but my doctor explained that the hypovolemia causes a drop in bp so my body dumps a bunch of NE to raise it, which causes a kind of rebound hypertension and the high bp and high NE levels. Thus, I have to first salt and fluid load to build blood volume so I'm less likely to get the hyper episodes; the beta blocker then lowers the heartrate (and sometimes the bp too much). I will go from 90/60 flat to 140/90 within a couple of minutes, so I experience both ends of the bp spectrum. I also had abnormal QSART results and neuropathic issues. I have hyper pots but clonidine causes rebound hypertension in me because my bp gets too low. Perhaps this distinction is not useful, as I think Rama has suggested (sorry...I don't always understand everything you say ); I'm thinking one day we may find they have subgroups based on cause, rather than manifestations of the syndrome (as "hyper" pots sometimes seems to be). I don't really find this classification helpful; in fact, sometimes I resent it because they want to apply a one-size fits all treatment to hyper patients (ie you shouldn't salt load because you've got high NE...yet many of us do).
  3. Kitt just as an FYI I was on 1800 mg/day of gaba (neurontin) for my back pain and the doc said the dosage could go much higher, so 2400 probably isn't excessive. It did help me sleep but caused horrible emotional side effects--random bouts of crying, depression, apathy, etc. (I am not, nor have I ever been, an emotional person...this was totally out of character for me). These are commonly known side effects of the drug by doctors, but they aren't ever up front about it. It also lowers your seizure threshold, so you can't dabble in it...you have to get on and off slowly and over time or you risk seizures. Lyrica is very similar to gaba chemically, but works better for some people as far as the side effects go. I was prescribed this but never took it (along with Zoloft, to counter the emotional side effects of the drugs...I just decided no more drugs and opted for surgery). Not saying it doesn't work perfectly fine for some people...just giving you my experience so that you can watch for those side effects if you choose to try it.
  4. I regularly use both nicotine gum and, more recently, the e-vapor "cigarette", to help bring up bp when it drops. I have one or the other at the ready after any blood draw because I faint if they take more than three vials or so. Both work for me, but the gum tends to make me nauseous, while the vaporizer doesn't have any GI side effects. While I agree that they're not harmless, my doctor has no issue with my using one or the other to stabilize bp on occasion, so long as they don't become habit. When bp is high for me, nicotine makes it increase markedly.
  5. I like the vampire one, robert elrod. My friends actually tell people "oh no we can't go out until after dark. Shana's a vampire." I live in New Mexico...it's hot...gimme a break. I even glow in the dark now I'm so pale.
  6. You can get the documentary "Forks Over Knives" as well just about anywhere; it really lays out the case this guy makes. It's pretty compelling except for the fact that the larger, longitudinal studies focus on China, and there are some significant genetic differences between myself and someone from China, not to mention environmental factors. Recently, the diet idea has come under fire with isolated genetic communities showing shared genetic mutations that play a role in longer lifespan, resistance to disease, etc. In Ecuador, for example, there is a group of people who share a mutation that causes dwarfism but also leaves them almost completely resistant to both heart disease and cancer. Still, I'm a convert...I feel better since I've eliminated meat; I was trying to eat just fish for the health benefits, but it made me sick. Turns out there's so much garbage in fish that it provokes my body in bad ways. So that's enough for me.
  7. Chaos I need you to come down here and do my PT. They tried to put me on a treadmill the other day in a room that was like 90 degrees. I would have been face down on that treadmill.
  8. Not a great answer but I often don't sleep enough and I have a bit of decaf coffee. Regular coffee, even a bit, will jack up my hr and bp but decaf has just the tiniest bit of caffeine and that helps without sending my system into overdrive. I also lay down and close my eyes a lot, whenever possible; it's not sleep, but it does seem to help pick me up.
  9. I was not able to get the plasma catecholamine test in my area when I first became ill. I had several urinary cat tests and they showed nothing. My doctor gave me a standing order for a urinary cat test, and when I had a hyper episode (very high bp, chills, and that shaky "I'm gonna die" feeling) I ran to the lab and got the containers for the test. My cats were sky high. Later, when I went to Mayo, I was given the plasma test and they were high then but not nearly as high as the urinary test. So, at least in my experience, urinary cats can be indicative of a hyper state. My doctor emphasized to the lab the proper collection procedure (he looked at Mayo's online lab catalog) and measured the first 6 hours after the "surge" in a seperate container than the next 18. Why that is I'm not sure, but I definitely had evidence of out of control cats in my urinary sample. While the cats are supportive of the diagnosis, the doctors I've talked to are pretty comfortable labeling a person as "likely hyperadrenergic" when there is the increase in bp on standing and, often, a valsalva with an exaggerated bp response. My own serum cat test had to be "cheated" because it's hard to get blood out of me and they used a bp cuff to force it out, which could have skewed the results, but my neuro didn't seem overly concerned as I had the other indicators of hyper.
  10. I'm just recovering from a severe back injury that had me on crutches for two months on and off (before I progressed to a wheelchair). It was horrible to be on crutches. They force you into a position that is almost completely upright so you can't do any of the little adjustments you do with pots to keep from getting so dizzy/tachy. You're right...they take tons of strength to use and wore me out completely. I would be exhausted just walking to the car. I don't know how long you should use them for a sprain. I broke my ankle once and it was 6 weeks, but that probably doesn't help much. Sorry about your ankle. I wish had more info but know that I empathize with you; they really are uncomfortable.
  11. Like Issie, I'm also recently a vegan convert. Cutting out meat, eggs and dairy have made a huge difference in the daily fluctuations of my pots. I still have pots, but it's more stable now. I don't get the crazy ups and downs in bp, pulse and my CNS is less active at night ( I still twitch, but a lot less). My doctor is a big proponent of Dr. Andrew Weil's anti-inflammatory food pyramid. I have one on my refrigerator door. Mushrooms are encouraged. I'm even taking mushroom supplements. They have calmed things down a lot. Lots of Asian mushrooms (not portobellos or the button/white mushrooms that are so common). I eat dried shitakes. They taste like dirt but seem to keep me steady. Carbs kill me. I'm so dizzy after eating even whole-grain pasta that I can't sit in a chair and keep my head straight. It just rolls all around. Seeing a plate of pasta is, to me, like watching someone ride the teacups at Disneyland; I get dizzy just looking.
  12. I have improved a lot with the addition of beta blockers to control the horrible hyper surges that left me miserable for days; it took awhile to find the right one and balance the salt/fluids/etc. but I've gotten to a good place. Controlling my very sticky immune system has also helped a lot. Mostly I've eliminated all dairy, most meat (including fish, which triggers my issues), and artificial anything. My diet is boring but I've lost weight, have more energy, and am not in the ER once a month for random infections and fevers that worsen my POTS. Exercise has made my daily life a lot better, specifically the dizziness, which was my worst symptom. I can stand longer (with the help of a binder). Mentally, two things have helped me the most: 1) I don't fuss over my symptoms anymore. I check my bp once a week unless I think I'm having a surge. Otherwise, I ignore my randomly unevenly dilated pupils, the suddenly jerking leg, or the shivering when it's 90 degrees. I just say "well, I have pots" and move on. Unless i have a fever or it doesn't go away in a day or so, I just ignore it. Anxiety was making it much worse. 2) I allow myself to be a potsie. If I'm forgetful or just too tired to do something, I don't. I'm sick. Period. I'm not gonna feel bad about it, and I don't let anyone else make me feel bad. If they try, I bombard them with pots info until they shut up (links, blogs, you name it). No one messes with me anymore.
  13. Thanks for that info janet. The sedative they were going to give me for the shots was Versed, but they didn't because of those concerns over bp. It may have been good that I didn't get it even though I had the narrow pulse pressure scare. I am so sorry to those of you having to consider surgery. It is a scary proposition both with pots and with the possibility that it could cause a severe relapse. I'm glad I did it now but I was terrified. So far my pots is staying pretty stable and I'm very thankful for that. I also have a history of mrsa acquired from the hospital and my incision has healed well and without infection. I think this is solely due o my nutritionist Dr. Berkson who has worked to get my immune system on track. My neuro is even interested in some of his recommendations because my immune system was such a disaster and is recovering so nicely and quickly.
  14. All my doctor said is that they both are pretty much the same but 150 mg ranitidine is cheaper than 40 mg famotidine (comparable doses) so they recommend you try the cheaper option first unless you're on a med that might cause an issue. Same advice was given regarding zyrtec and allegra, but for whatever reason allegra works much better for me than zyrtec with the mast cell issue. I've never actually compared prices on the drugs you asked about, since zantac works pretty well for me, so I'm not going to attest to it, but that was the conversation we had.
  15. Thanks so much for all of the well-wishes! Angela--it's difficult for the docs to really say what causes a herniation when the onset is slow, but in my case they are pretty sure it was yoga because of the nature of the herniation (up and out, rather than just down). Doc said that's hard to do in the course of normal activity, and asked immediately if I do yoga because he's seen similar herniations in those who do. I'm not sure why some herniated and others don't. I don't have an eds diagnosis, but I did have lunch with chaos who seemed to think I had some hypermobility, and this is the second issue I've had (lost sensation in my right thumb last year bc of a tendon issue). Corina I wish you much luck. Pain is the worst. I hope they resolve your issues safely. I asked about an epidural but they said they couldn't do it bc of the location of the injury. I didn't pursue what exactly that meant. My physical therapist doesn't know what to do with me. Just about everything that "should" correlate with my injury as far as flexibility etc. doesn't. I am dropping my foot when I walk, typical of this, but stuff that should cause me pain doesn't and stuff that shouldn't does. I don't know if that's the pots or possible eds or what, but she says I'm just wired differently than anyone else she's had before. Lucky me.
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