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Everything posted by NMPotsie

  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.
  16. I haven't been on the forum in awhile because I've been a mess, but I remember when I was on here there were a lot of questions people had about having surgery with pots. Since I just had major surgery April 9th, I thought I'd share my experience for those of you who are interested. It's long, so quit while you're ahead if you're not interested. I herniated a disc in my lumbar spine in December doing yoga and the hernia ended up right on top of the root where the spinal nerves exit for the right leg. I was in excruciating, agonizing pain. I was on crutches and, near the end, a wheelchair, on massive doses of narcotics to survive the day, and basically curled up in the fetal position for three months on and off. Doctors kept delaying surgery because of my POTS; they thought it was too risky. In March I went to see my neurologist, Goodman, at Mayo Scottsdale and I was in with a neurosurgeon on Thursday, scheduled for pre-op on Monday, and in surgery on Tuesday. They decided the pots risks were outweighed by the damage being done by the nerve compression, so off I went. There is a lot more to the story, but I'll try and be brief. The highlights, for those interested: 1) My doctors decided it was safest to do the surgery at Mayo where they understood my pots. This was following a scare during an epidural steroid injection I had in my hometown . The anesthesiologist who did the shots was wonderful; he listened carefully as I explained pots, wasn't dismissive, and did the best he could. However, he didn't administer a sedative because my bp was very low (as it usually is) when I went in and he was afraid it would make it worse. Mid procedure, my bp jumped from 78/50 to 117/100, where it stayed. Rather than administering a sedative, he continued with the procedure, while my pulse pressure remained far too narrow for my neurologist's comfort. Later he said he just didn't know what to do. That didn't help Dr. Goodman's perception at all. Nor, for the record, did it help mine. For the second round of shots, I opted not to get the sedative but, per my doc's suggestion, I took extra bbs and monitored my own bp throughout the procedure so I would know when to make adjustments if necessary (I just had them turn the machine toward me). It stayed reasonable (I have very hyper hyper pots and those shots are very painful, so I know that was what put me into that territory the first time). 2) I underwent general anesthesia. It went fine except that my pulse dropped in the 20s during surgery. It was 30 when I woke up. The recovery room staff gave me lots of fluids, monitored me closely, and left me alone. As soon as I was able they got me upright. I jokingly said "wait and see...when I stand it will be 125." It wasn't; they sent me home when it got to 47. Again, a pots thing I often suffer from and I long ago quit worrying about brady bc I'm either tachy or brady, never normal. 3) My doctor said because I have pots and mast cell issues, there's a greater than 50% chance that I will have a severe relapse of POTS, for which I would be put on prednisone to try and stop it in its tracks. So far, that hasn't happened. I'm not great, but I'm about where I was before I was exercising like a madwoman, so I know I'll get back as long as my immune system doesn't have any nasty surprises in store for me. 4) Oxycodone causes tachycardia (like I've NEVER experienced--resting hr was 100+, with standing at 165 constantly) and severe withdrawals, which really really suck when you have pots. I lost 12 pounds in 5 days and I still can't eat most of what's offered. Between the antibiotics and the narcotics, plus my already potsie GI tract, I'll be surprised if I can ever eat again without nausea. I was on a mostly plant-based diet for 6 months prior to surgery, having meat only once a week, at the insistence of my nutritionist; when I see a veggie burger now I have to leave the room. Just...NO. Overall, it was absolutely worth it to get the surgery because I'm off meds, out of pain, and much happier. However, I would do serious shopping for a surgeon because if something goes wrong I know firsthand that they may just flail. If I had to go under again i would, but I have spent a lot of time explaining to my husband and my GP exactly how to manage my care, as best I can, so that if an emergency arises I will have the best chance of not getting treated in a dangerous manner. If it wasn't an emergency, I would certainly go back to mayo because they have helped manage my disorder better than anyone. Dr. Lyons, the chief of neurosurgery there, did my back surgery. He was a NICE surgeon! I didn't know they existed. Sorry if this was too long and/or completely useless, but I did warn you.
  17. Like Alex I'm on 10 mg (3xday in my case). If I take 5 it doesn't usually do anything for me either. When I'm under stress I will take 20 if bp is very high. 10mg is a very low dose of propranolol. I have a friend who takes it for hypertension and he takes 240 mg/day so 10 is very low.
  18. Steph I had several urinary tests and many did not show anything other than normal results. A couple of times they tested my urinary cats and they were normal; the only time they showed high was immediately after an actual surge. When I did the plasma cat test where they take levels laying down and then standing up I wasn't symptomatic at all and they were still pretty high. I wouldn't entirely trust those urinary tests. The same is true for the urinary methlyhistamine--it is supposed to be collected in a 2 hour session immediately following a flushing episode; 24 hr collection random collection results often show normal but don't really mean anything. Those chemicals clear your system pretty quickly. Ask for the plasma catecholamine test--you can even get the directions from the Mayo clinic catalog and get a local lab to work with you; someone I know got one done at the hospital and they sent it to Mayo. For the urinary methyl, most labs don't do it correctly; even mayo does it in a 24 hr span. I'm not sure who does it right, but if you did some research you could probably find out. I wouldn't give up yet on your search. If you have to spend a bunch of money on this alternative doc, why not use that to take a trip to a clinic or pots specialist? I can say from my own experience that it is well worth the money.
  19. kitt I was dxd at Mayo Scottsdale after a harrowing 2 years of thinking I was dying at least once a month. Everytime I have gone I have come back feeling better and doing better. My doctor, Dr. Goodman, is like Superman. I would give him my firstborn if he asked. LOL
  20. I wish I knew how to do the quote thing! I need dinet training. I will try to get it right. Kitt: The beta blockers help to control the dumps of norepinephrine so I don't get surges. I would randomly get these horrible episodes in which my bp would go incredibly high (ER got 180/160 once), my heart rhythm would go completely wackadoo, and I would be sick like death for a week; so nauseous I couldn't stand up without vomiting, cold chills, sweats, and extreme dizziness. Since I've been on the propanolol I haven't had a single severe surge (worse bp was 150/110 but I wasn't incapacitated for a week after). These things were so terrifying that I cannot imagine having to endure them again. I take 10 mg TID. If I don't take it every 6 hrs. in the day my tachy is terrible. I have been put on h1, h2 blockers, gastrocrom, aspirin, dymista and ketotofin eye drops to control the mcas (lots of mast cells in your eyelids I was told; didn't know that, and if you rub them they release loads of histamine). I haven't been able to start the gastro because I'm fighting a MRSA infection, but hope to at the end ot his week. Now that I've been on the blockers I've noticed a significant drop in my bp. It's running low, and the neuro said when I go back in December he will put me on midodrine to augment the bp. He wants me to stay on the bb. They didn't really explain why it worked for me, just that my particular kind of hyper needs something to control the adrenaline issue, and clonidine gave me severe rebound hypertension. They even added xanax at night because my sympathetic nervous system is so overactive that I lay and twitch and you can see the twitching of my muscles. I had to videotape it because it was so weird. Kelly: thanks for that information. It helps to know I'm not the only one who seems to have an odd profile. It's bad enough to have pots, which no one has heard of; worse to hear you're not even a typical potsy. The variety of chemicals make sense for why I'm not responding exactly like everyone else. The important thing is I have more good days than bad now, and for that I am soooo gratefull.
  21. My doctor insists on it. He says the flu is the last thing I need with POTS, even though I believe that the H1N1 vaccine may have contributed to my dysautonomia.
  22. You may have already seen this, but I thought it was interesting. I know a lot of people suffer from ic on here. The authors saw significant mc activation in ic patients. http://cat.inist.fr/?aModele=afficheN&cpsidt=3407203
  23. I have severe chest/facial flushing, probable MCAD with elevated tryptase, methylhistamines, prostaglandins and IgE. Also dxd hyperpots with significantly elevated plasma cats. I am on the Mayo mast cell protocol AND beta blockers, which work well for me, so I guess I'm uber-weird. Doc says the bbs are fine as long as I'm tolerating them. My hyper episodes were so severe, especially when I was ill, that propranolol is a med I won't give up unless I really, really must. I'm terrified of that. I also have a completely wacky immune system that overresponds to friendly stuff and allows bad stuff to just waltz right in and make itself comfortable. I have an infection somewhere random about once a month and spike very high fevers that exacerbate my pots symptoms. The more I read on here the more I think there is something else going on as I'm not fitting any "model."
  24. Prior to my tilt I was told not to take a variety of meds, including antihistamines. This link might help, though I would still talk to your doctor. http://www.neurology.upmc.edu/neuromuscular/patient_info/testing.html
  25. Flying wiped me out for a week last time. It was awful. Nausea, dizziness, tachy, etc. I got saline before but it didn't help me (usually doesn't). It was a long flight, though. I have to fly for work in February and asked doc specifically. He recommended everything people already mentioned except he also insisted I wear waist-high compression hose even though they irritate me. Also, this one is only 1.5 hrs rather than 4+, so I'm hoping it will be better. I wouldn't be shy about asking for a wheelchair for lines, but do try to move around as much as possible.
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