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Everything posted by HoudiniCat

  1. I?ve been a patient of Dr. Bellew?s for 2+ years and he has treated and helped many, many POTS patients. I also was referred by Dr. Goodkin. At my first visit, although he knew I had POTS, during the initial exam/treatment, he was telling me what my most bothersome symptoms were before I was telling him. His cranial manipulation technique is a combination of exam and treatment where he identifies abnormalities/misalignments of the brain, spinal cord, tissues, bones, nerves, fluids etc. It?s a gentle relaxing head massage while you?re lying down in a dimly lit, quiet room with relaxing music playing. Once he identifies things that are ?out of whack?, he gently maneuvers your head/neck area to try and bring things back to normal. For me, it?s a totally relaxing experience and I feel his treatments have been an essential component in my POTS recovery. More on cranial osteopath - www.cranialacademy.org
  2. Me too. Same problem - no real solution. Docs tell me I have 20/20 vision yet after a bad day it's on with the readers to even be able to make out words on the page. Sometimes just closing my eyes for 10 minutes or so will help. Or eyedrops may buy me an hour or two. But usually when my vision starts fading, thats my cue to call it a day.
  3. I?ve had this often since I was dx?d with POTS and been on a high-salt diet. If it?s hot and humid and I?m standing a lot, I get swelling in my left ankle (sometimes both) on a daily basis. Trying to keep my feet up during the day helps me a little (not much, though). It resolves after I sleep at night and then the whole process starts all over again. My doc said not to worry ? not painful or dangerous ? just annoying.
  4. I used to get this all the time and I can sympathize with you. At its worst, I would first wake up and do the 4-count breathing technique that Carinara described while slowly sitting up and then getting out of bed. Then a big glass of water and trying to sit calmly for a few minutes all while doing that breathing/counting. Over the years, as my POTS symptoms have lessened, so has that one. I don?t believe I?ve had an AM tachy episode like that in over a year. Good luck.
  5. Yes, I used to get that all the time. A burning, tingling feeling down my spine, radiating over my shoulders or down my neck. Then the pins and needles-numbness feeling in my extremities. My POTS doc was almost 100% positive it was just another annoying POTS-symptom but did an MRI and other tests to rule out MS. Sure enough, it was just the POTS. Nothing really seems to help. I used to put cool cloths on my neck and back to stop the burning and just try to walk it off and/or do something with my hands to get the blood flowing. Sometimes it worked, sometimes not. Hang in there.
  6. Another vote for the kitty. I lost my beloved cat last year and was devastated. When I first got sick, cuddling with him was the highlight of my day. Feeding and tending to him was the only reason I got out of bed on some days. My friend got me a kitten shortly thereafter and at first I didn?t think I was ready. But after only an hour or two, I was in love with the new little one. There nothing like a good purrrrrrrr to make you feel better!
  7. Thanks for the tip Harry - that's a great idea to keep cool. My brother wears them all the time, especially when hiking or working outside when it's hot out. Years ago when he first started wearing them, he would get a few double-takes but they've become more and more popular in the US. Along with Utilikilts, another great company is Amerikilts.com - the kilts look like a pair of Carhartt shorts or cargos - so they don't really stand out, if you're nervous about wearing them. Keep cool everyone!
  8. I almost always felt bad in heat/humidity, during my period, whilst drinking alcohol, taking hot showers, etc. If I was experiencing one of those things I would feel ?different?, two of them pretty lousy and three of them . . . well, three strikes and I?m out . . . literally out ? passed out on the floor. My whole life I?ve made a conscious effort to avoid having those occurrences overlap each other. Always craved salty snacks and guzzled water. Always shifted weight from leg to leg when having to stand (in the heat) for any length of time, always sat knee to chest. Pretty much all of the well-known counter-maneuvers, I've always done. And Erik & Janey ? I can totally relate to the ?super-mellow? comment. My friends and family say I?m ?in the zone?. I always wondered why everyone doesn?t do this.
  9. Count me in. I can get the all-over body trembling/quivering or get it in specific places -abdominal spasms, twitching hands/fingers, jumpy muscles in my back or legs. Not much to do about this. It still happens but I barely notice it anymore.
  10. I love all the Winsor Pilates workouts - great beginner ones for those days when you just want to take it easy and lots in the advanced series for when you want to give yourself a challenge. They were very popoular a few years back but you can still get them on eBay and Amazon.
  11. I used to get that all the time. Tried to calm them down with meds and/or salt/water loading before bed but that didn't help. My POTS doc said that was not an uncommon complaint amongst his patients. Said sometimes are bodies are just very sensitive to any kind of position change at all. While most POTSies get it going from sitting to standing, etc., some can get symptoms like palpatations from even changing positions during sleep. For awhile I would kind of sleep with one eye open to be sure I wasn't rolling around in my sleep. That cut down on the palpatations but then I'd be exhausted from not getting the proper sleep. Sorry, I really didn't find anything to ease this symptom - just another that would come and go for me.
  12. No words of wisdom on how to relieve this symptom. I would alternate from sitting in front of a fan to wrapping myself up in a blanket. Some women at my office who suffered from menopausal hot flashes had me try putting an ice cube on my wrist for a few seconds to cool down but then that just made my cold sweats and shiverring even worse. For me, this was totally POTS-related and I found that over the years, as I've been getting better, this symptom has faded too.
  13. In addition to salt/water loading and lying down, I'll wrap my neck and shoulders with a buckwheat hull pillow (especially good when it's warmed up in cold weather) or use a little battery operated massager to provide some relief.
  14. 1. between 2 and 5 years 2. 0 3. approx. 180 mins/week 4. 10-20 grams
  15. Yes and they?re happening more and more often now, which is great. At first I would question myself at the end of the day ?What feels weird about today?? and the answer was ?nothing?. After two and half years or so it just felt really weird to have a symptom-free day. I?m not back to my pre-POTS self though yet and I definitely have a ?new normal? but any time at all without symptoms, be it days or hours, is fantastic.
  16. When I first got sick with POTS my hair started thinning out and I thought that it couldn't possibly be another crazy, seemingly unrelated symptom. Apparently it was though because since I've been feeling better my hair has come back and even better than it was before. Not sure why that happens - maybe the decreased blood flow to the head has something to do with it. While it was thin I treated it as gently as possible - no overbrushing/styling, tried to use as little product as possible and no ponytails.
  17. This was one of my first symptoms too. When I told my doc about it he said it wasn?t uncommon and ?that?s what puts the P in POTS? ? rolling over/changing positions during sleep would easily trigger the fast HR, numbness in limbs, etc. As my symptoms have improved over the years, I never get that anymore so I?m pretty sure it was POTS-related.
  18. 1. No 2. Yes 3. Yes 4. Anxiety was one of my worst symptoms; thankfully it (and most other of my symptoms) are under control now 5. No 6. Wax and wane throughout the day, if that makes sense 7. Abrupt
  19. I believe he can do blood work right there in the hospital but I always had mine done in a local lab closer to home. His office is in a hospital complex, in case you didn?t know. I started with Florinef and Toprol XL. They worked good for me (but not great). Over the course of two years, he had tweaked the dosages of those, we tried Klonopin (benzo) for awhile, and he suggested several other drugs for me to try (Procrit, Propanolol, Midodrine) that didn?t really do it for me. We also discussed some alternative treatments (licorice root, d-Ribose (which he gave me a bottle of), CoQ10, B5, niacin, etc.). He wasn?t really a fan of the alternative treatments but listened and let me know what he thought I should try/shouldn?t try. I kept going back to the Florinef/Toprol combo. I?m on no meds now and able to function very well (not 100% yet but still hoping.)
  20. Dr. Goodkin saved my life! I cannot say enough good things about him. He is definitely genuine and caring and is very well-versed on the subject of dysautonomia. His daughter has/had it and that is how he first became interesetd. In addition to his ?regular? cardio patients, he sees a vast number of dys. patients ranging from mild to severe. Appointments are usually long (an hour) as he really listens to you and tries to find out what works/what doesn?t work for your individual treatment. He uses traditional meds and also refers patients for further treatment to a cranial osteopath (in Claymont, DE). You can chose to add the osteopathic treatments or stick solely with Dr. Goodkin?s plan (I did both). Bring all your questions ? he?s a wealth of information. Best of luck!
  21. A nutritionist at the health food store had actually suggested this to me. My POTS doc was really hesitant about letting me take it but since I wasn?t taking any other meds he agreed to let me try the kava kava tea. I want to say that it helped my symptoms (definitely not the same effect as popping a Klonopin) but I felt there was much less risk/side effects in sipping the tea than using the benzos. I have used this on and off for years to help manage my symptoms.
  22. Count me in on this too. I used to get these episodes all the time and thankfully, it only happens occasionally now and I can pretty much pinpoint it to the times I?m overdoing it. Ah, the ?drunk days?. Walking around in a dream state, slurring my words, can?t remember a thing. Days when making breakfast is just surreal. Step #1-Pour cereal in bowl (can?t find cupboard with bowl; can?t remember why I am holding a box of cereal). Step #2-Pour some of that cold, white liquid from the fridge on top of cereal (you know, that stuff in the carton that comes from cows that people drink ? apparently the word ?milk? has been temporarily erased from my memory banks.) I used to fear that this would be the precursor to a faint but now I know I can stay this way indefinitely and not faint. And I used to think it was from the meds but I?m off them now and this still happens. It?s very strange. Nothing to do but call it a day and lay down for me. Somehow my brain gets rebooted overnight and I wake up fine ? ready for some cereal with milk!
  23. I was dx?d with POTS at age 45 (I can tell you the day and hour I got it). Didn?t have a virus or wasn?t sick at all before. Not the ?typical? patient that my doc has seen during his many years of treating POTS. However, his comment that the illness was ?short-lived in most? always gave me hope. Two and a half years later and I?m much, much better. I went from bedridden to working full-time, able to socialize with friends, no more meds, most symptoms being resolved, etc. At my last visit in January, he gave me a big hug and sent me on my way. Told me to call him ?in the rare event of a relapse?. But said I was like the majority of his patients who get sick ? that they are dramatically better in several years. I?ve still got some annoying symptoms and won?t be running any 5K?s any time soon but all in all, much, much better. I agree that most of the people who get better no longer frenquent the site. I've seen many come and go in just the past two years.
  24. So sorry to hear about the loss of your loving companion. I had a similar situation last summer with my cat and I don?t believe there is anything you can do in situations like these when you?re body is just not listening to you. I was so sad (and mad) that I got cheated out of handling the situation the way I wanted to/the way I would have before POTS. But the main thing is to not beat yourself up and take care of yourself now. I?m sure you and your family have many wonderful memories of your furry friend and I hope they bring you some peace and POTS-free days.
  25. When I first got sick (Dec. ?06) I was out of work for about 4 mos. and thankfully was able to work from home. Following that I came back doing a 4-hour per day schedule and slowly (over the course of months) worked my way back up to a full day (plus 2.5 hour round trip commute) schedule. Most days I?m at my desk and able to get thru the day just fine. Other times, if I?m running around to meetings or just overdoing it, it?s difficult. I?ve not had to leave my office early due to a POTS episode since Feb. ?08. I definitely feel like I?m getting better ? not 100% yet but keeping my fingers crossed.
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