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dizzytizzy

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Everything posted by dizzytizzy

  1. @Shannoncr: I'll PM you regarding the syrinx!
  2. Oh, forgot to add. Was allergic to milk as a child, seemed to grow out of it. Eliminated gluten and dairy back in 2009 due to significant digestive issues and noticed improvement, but was never officially tested for those allergies. Used to get very itchy mouth every time I ate watermelon, but haven't noticed that as bad lately. Have hay fever and animal hair allergies (short hair dogs okay, long hair anything isn't), but no other allergies diagnosed. My PCP recently suggested I get MRT LEAP testing done, but it's out of pocket from what I understand and not sure we can swing it right now.
  3. @Kalah: Thanks for weighing in. I was still having lots of throat clearing, congestion, and some itchy throat when I went to bed last night. This morning at 6:30am I got up to use the restroom. Laid back down and felt like I couldn't breathe. I broke out in a sweat and felt very dizzy/lightheaded. Laid back down and put an ice pack on my chest and just tried to focus on breathing in and out, but scared me and my husband tremendously. Subsided after about 10 minutes, though I'm still feeling some SOB today. I'll look up the stages of anaphylaxis.
  4. @Shannoncr: Thanks for the recommendation! Would the xray show anything different than MRI? I've had full spinal MRIs done in the past which showed significant DDD as well as herniations/sacral tears. I was only 32 at the time (now 36) and received many comments that there was a lot of damage considering my young age. I also have a thoracic syrinx (T4-T10) and have had a synovial cyst (in the cervical spine I think) that showed up a few years ago but wasn't noted on this most recent scan.
  5. @jill28: So sorry you are experiencing this. I don't necessarily feel the surge, but I do wake up out of a dead sleep with tachycardia in the 150s/160s. Extremely shaky and tired afterward often with diarrhea too. EP thinks these are adrenaline surges. For me, they always happen within one hour of falling asleep or between 4-6am. I've experienced them both when lying flat and when elevated, either on pillows, sleeping in a recliner, or with the head of my bed elevated.
  6. I know several people here have MCAD/MCAS and histamine issues. Wondering what your symptoms typically are and what foods or things in general you react to? A few weeks ago after eating homemade guacamole for dinner, my throat and ears got very itchy and my nose became congested/runny within about 15 minutes of eating it. It felt like my hay fever allergies initially, but the response came on so strong that I was actually afraid it was going to keep going and turn into a full-on anaphylactic issue. So I quit eating it and the symptoms mostly subsided within an hour or so. I did end up waking with tachycardia that night though. Tonight, I got intense lower abdominal stomach cramps within about 30 minutes of eating dinner (no guac though!). I ended up spending an hour in the bathroom, initially cramping and constipated and then cramping and diarrhea. During the time in the bathroom, my throat became incredibly itchy and sore (like strep throat sore level), my ears itched, and the congestion/runny nose and coughing started up. This reminded me that I've had similar experiences in the past, usually in the middle of the night with constipation/diarrhea and these similar allergy type symptoms. I had dismissed them as they only happened occasionally. Does this sound like a food reaction or possible MCAD issue?
  7. @zerohours000 I am scheduled to be seen in the autonomic clinic at Cleveland in November. Local EP has diagnosed auto dys, but doesn't have the capability to perform any of the testing like Cleveland does. I know there's some arguments that the extensive testing isn't helpful/worth it, but for me personally, it will help peace of mind...I think 😁 I'm someone who needs to know the whys behind things and want to do what's within my reach to find that out. I've been unwell since 2004 and largely gave up doing any further testing around 2008 or so. Switched to this PCP in 2014 and she's really went above and beyond trying to help me, but we've run our course as many of the labs - like antibodies - have come back normal. Mainly have the chronically elevated inflammatory markers and now elevated prolactin, DHEA, and cortisol. She's disappointed by the rheum visit and thinks a visit with an endo may be worth it. We'll see. Pretty burnt out with MDs at the moment. To better answer your question: As more symptoms have piled up and nothing definitive has shown in labs/radiology, the PCP has run out of ideas.
  8. @KiminOrlando: Titer was 1:40, no pattern. I'll PM you more details, so as not to hijack the thread. But in short, I heard the resident (who performed the history/physical and exam) tell the rheum that "doctors have convinced her that there is something wrong with her." So the 8-hour roundtrip to Cleveland was a waste this go-around.
  9. @zerohours000: I hope the rheumy will be helpful. Not to hijack, but I just saw a rheumy at Cleveland Clinic yesterday (had high hopes) because I have a positive ANA and chronically elevated ESR and CRP as well as joint pain and just generally diffuse symptoms for the last 15 years. My PCP has thought for years that I had something rheumatological going on. This rheumy didn't place much weight on any of it. Said that "a lot of people have high inflammatory markers." Ok, well that's probably not a great thing, right? 🙄 Left with a diagnosis of fibromyalgia and no further suggestions.
  10. @Jimbo: Not in Cleveland - live about 4 hours away in Indiana. Which neuro are you seeing - Wilson? Please keep us updated if you find out anything. I'm really pushing my local docs to identify the underlying cause. I absolutely despise the idea of only treating symptoms and not at least trying to find out the why. Unfortunately, seems the docs and I disagree on this point all too often and many others experience the same frustrating path. For example, just had a followup with the EP's NP the other day and she said "you're young and healthy, your heart is structurally sound so you shouldn't worry about the tachycardia." AKA, we don't need to keep digging. Ok, well great! Don't exactly feel young and healthy and what happens if down the road my heart is no longer structurally normal. It's like they don't listen to themselves. That was not a reassuring statement.
  11. @Jimbo Sorry you're having a tough time. We've all been/are there unfortunately. I think the IV fluids only help to temporarily boost the blood volume. I was in the ER last week and did receive an IV bolus which helped to bring my heart rate down and didn't actually do all that much to my blood pressure at the time. But I did notice a higher systolic pressure (still within "normal" ranges) for about 5 days, though it wasn't consistent and dropped back to my usual off and on. When is your CC appt? I go in November. @KiminOrlando I do think that this treatment can be tough to get, even in the ER sometimes. I've been there a handful of times and have only been hooked up to fluids a couple of those times. Otherwise, they just monitor me and then discharge me several hours later, adding the same annoying advice you receive. I know that some docs are hesitant to prescribe these for fear of blowing out veins from overuse. And in the case of putting in a port, then they worry about infection. It's tough, because the effects aren't lasting and just like a medicine, require ongoing replacement to be effective. I do think IVs are more helpful than drinking fluids. Why? I really don't know. Maybe it's because the IV can be administered so much faster and essentially fills up the tissues with fluid. During the day, I can somewhat hold onto fluids from drinking, but at night all bets are off. Last night, I peed 5 times within 90 minutes of laying down. So all the intake from the day gets washed out at night...or at least that's how I feel.
  12. Hi @Don. I'm glad that you've had a good experience! I'm currently scheduled to be seen in the CC autonomic clinic in November. They were booked our further, but I happened to call when they also had a cancellation come through. Maybe I'm expecting too much, I suppose. At this point, we'll have to make at least three separate trips to be seen by the different specialists and it's an 8-hour roundtrip for us.
  13. I'm looking into Mayo or Cleveland Clinic for autonomic testing/diagnosis as well consults with neurology, rheumatology, and possibly endocrinology...and maybe other disciplines depending on what shows up. We're closer to Cleveland so my PCP has referred me there. However, after talking to scheduling, I found out I'll need to schedule each appointment separately, as in separate visits. I was hoping to do it all in one go or at least see a few doctors at once but scheduling was not helpful in this regard. I've heard of instances where people have gone to see, let's say, a cardiologist and then the cardiologist sent them along to a neurology consult the same day. But I don't think that's always the case. Is one clinic better than the other about taking an interdisciplinary approach and doing essentially a head to toe evaluation with different specialties all in one visit? I have a complex health history and have been told many times that I just need to be hospitalized and fully evaluated to make headway and receive a proper diagnosis.
  14. Like @Don and @Anamaria, I have had episodes where my heart rate has gone from low to 150s/160s. If you search the forum, you can read a bit more about it. But mine only happens at night. So I'll be sleeping (guessing HR is in the 50s during this time or lower), I'll wake up and feel my heart beating faster. By the time I get up, it is 150+. I can usually get mine to abate by bearing down and placing an ice pack on my face while taking deep breaths, but none of this worked last week and I ended up in the ER. Those I've talked to (including my EP) think these are bursts of adrenaline. However, I only get them at night so that's kinda screwy. But what isn't about this illness 🙄 Please report back on what your doc says! I'll be interested to hear.
  15. I really pushed my EP to give me a better guideline than just "eat more salt." For me, I was advised to consume 4-6 grams per day. I don't do the salt tabs as I've heard too much negativity regarding stomach problems with those, so I drink a lot of V8 juice with added salt, vegetables with tamari or coconut aminos, broth, etc. I try to get at least 2.5 grams by lunchtime or else I have a tough time getting it all in. Between the salt and the water, many days I feel like I'm busting at the seams 🤢
  16. @Pistol - Yeah, I can see that my EP is probably trying to do the same thing with the lingo. I think more people became aware of POTS and that led to fewer people realizing it's actually a continuum. At the recent ER visit, I told the nurse that I had autonomic dysfunction and she was immediately like, "Oh, POTS?" So there you go. She seemed rather confused when I was trying to explain there are more types than just the "traditional" POTS.
  17. @StayAtHomeMom I can't recall what I've eaten the other times that this has happened, but the most recent time I had a BLT sandwich for dinner. I had some of that guacamole too, until I realized I may have been having some time of allergic reaction to it and stopped eating it. It wasn't necessarily a heavy meal, but was definitely eaten later at night than usual.
  18. Last midodrine dose is always taken at least 4 hours before laying down. I also sleep on a reclining sofa, so I don't lay flat either just in case to avoid supine hypertension. I take my nighttime BP when I lay down and it's always on the lower side around 90/60, sometimes a few points lower. These episodes happened well before I started taking midodrine too - they were the original symptom that launched the search into dysautonomia. And nighttime has been the only time I have actual tachycardia (aside from the obvious like exercise). When I've had to call the ambulance, BP has been 120s/60s and 130s/60s. This is after 20-30 minutes of the high heart rates and trying not to freak out further, so I don't feel like those numbers are excessive. Wondering if it's more of a drop in BP or blood sugar than actual POTS??? EP just says I have dysautonomia. He won't actually call it POTS, but my suspicion has been that hyperPOTS is the most likely cause if it is truly POTS. Hopefully, my visit to Cleveland in November will net me a more detailed diagnosis.
  19. Does anyone have tachycardia episodes only at night? I've been diagnosed with the general and vague term autonomic dysfunction. Before diagnosis and starting midodrine, increasing fluids/salt, and wearing compression socks, my BP and HR would increase quite a bit upon standing, though HR increase never exactly fit the requirements for POTS I don't think. EP has said he thinks I have low blood volume and peripheral pooling, though no tests to actually confirm that. My tachycardia episodes - with HR ranging from 150s to 160s - always occur at night and wake me up. They either occur during the hours of 4-6am or within one hour of me falling asleep. I usually wake flushed/warm and with a noticeable pounding in my chest/throat. HR is faster than usual for sleeping but not necessarily to the 150+ range yet. By the time I get up to get an ice pack or prepare to possible do a vagal maneuver, the HR is up to 150+. I had always been able to stop these fast rates by bearing down and placing an ice pack on my face with deep breathing - usually works quickly and breaks the cycle and then HR gradually slows back down. Three nights ago, none of these techniques worked. Took a 30mg diltiazem as EP told me this would work if other techniques didn't though I question the effectiveness of this because it didn't ward off a prior episode a few months ago. The EP had me trialing diltiazem at that time and taking it every 8 hours. I took it at 10pm one night (as usual) and woke a little after 11pm with tachycardia of 150+. Bearing down worked that time and that was also when he switched me to midodrine. Anyway, the other night I landed in the ER because of the intensity of the episode, lightheadedness, etc. They gave me a bolus of IV fluids and then another bag at a slower rate, which worked to bring HR rate below 100. EKG in ER showed sinus tachy. Only other oddity was lipase was slightly elevated (had eaten a late dinner) and TSH was triple what it had been just 10 days prior when PCP ran my thyroid panel (I have Hashimoto's). Interestingly, TSH has been high each time (though free T3 and T4 are normal) I've landed in the ER with these nighttime issues, which makes me wonder if this is playing a role or is an after effect of whatever is causing the tachycardia. As an aside, I had also eaten homemade guacamole that night. Within 20 minutes of eating it, my throat got very itchy and nose congested. I actually was a bit worried I was having some type of allergic reaction although I've eaten guacamole plenty of times. It made me wonder about histamine release/mast cells causing the tachycardia, particularly because I have rather high systemic inflammation based on labs. I frequently have lightheadedness, palps, and presyncope during the day, but no actual tachycardia when upright. I head to Cleveland in November for a second opinion with Dr. Mayuga at the autonomic clinic. Can't come soon enough! TL;DR - 1. Anyone have tachycardia episodes only at night? 2. Anyone have high TSH, but otherwise normal thyroid tests following these episodes?
  20. @ks42 Thanks for breaking down your thoughts on this and I'm sorry to hear you're in a flare. I agree about the fee schedule being very high. We have a doc turned direct primary care/holistic here locally and his fee schedule used to be somewhat reasonable, but has grown with his popularity. I mean, I somewhat get it - supply and demand and all - but there's also an ethical component that is missing (in general) from medicine today where it prices people out of the market, usually those most in need. Preaching to the choir here, I'm sure 😉 If my sister stilled lived in Tucson, then I'd probably at least try out an in-person visit with him since I wouldn't have to pay for lodging/food. But to pay for the visit, the flight, lodging, food, etc. after already paying thousands this year for medical needs, we just can't swing it. I have downloaded his book and am looking that over and may try the Skype option he offers just to gather more info. My PCP wants me to head to Cleveland to do the full autonomic testing as well as consult with neuro and rheum due to the wide range of issues/symptoms I've accumulated over the years. The EP here doesn't do any of the testing like that as he seems to follow Dr. Grubb's thoughts on that (who I've been told no longer does the extensive autonomic testing either). The EP doesn't call my issue POTS - he just says autonomic dysfunction and/or blood pressure dysregulation. As you all have often experienced, it's frustrating to not know what "caused" it all and that's where I'm at now. Because I've never been textbook medical, I'm afraid they're overlooking something as is my PCP, hence the referrals to Cleveland Clinic. @ks42 Do you mind sharing where I can find more info on the adrenal yoga program? I seem to have problems with excess adrenaline and sometimes get surges at night.
  21. Oh by the way, I've sent this info off to my PCP and EP. Curious to see what their takes are on it.
  22. Yeah, I'm not sure that this is the end-all, be-all for autonomic dysfunction treatment, but nothing that he advised seemed to be way "out there" or excessively expensive. It does seem to be a rather benign treatment plan with few if any potential side effects, especially considering the intense pharmaceuticals (with their own share of side effects) that many of us have taken or currently take. And as someone who has inflammation that needs to be addressed, this may provide some improvements. And if it does, I'll certainly take it. Living in a chronic state of inflammation can't be good. I'll update if I do a consult with him and/or attempt the protocol on my own. Here's a YouTube video about his research:
  23. NemHi all, I did a quick search and didn't see anything mentioned about this. Has anyone heard of/looked into/completed the Nemechek Protocol?It was created by an internist out in AZ. He also had a protocol for Autism/ADD/ADHD, which he believes is caused by brain inflammation and ANS dysfunction. My understanding is he believes much of ANS dysfunction is caused by inflammation and the resulting damage to the nerves (if I'm interpreting his site correctly). While he doesn't list the complete protocol online, he does offer his Autism/ADD/ADHD protocol for free. If the Nemechek Protocol is similar, then it sounds like it focuses on balancing the gut (i.e. eliminating SIBO) and increasing omega 3's through fish oil supplementation while also eliminating the use of omega 6 oils and using EVOO in its place. I've also read that he encourages high water/salt intake and the use of compression stockings. I find this interesting because I have had chronically elevated CRP and hs-CRP tests, indicating there is systemic inflammation at play, though no one can really tell me why. Anyone familiar with it or think it's just wishful thinking? I'm actually on the fence on this one, because it sounds like he doesn't promote the use of lots of supplements or have his own supplement line where he can make tons of money off of it. I always side eye the docs who are making money off of the appt and supplements.
  24. I get these episodes of dizziness/extreme lightheadedness from time to time. Just had one this morning and it felt like I was going to pass / black out. I'm too afraid to take BP during these times, but my guess is that I had a drop in BP. Could be what's going on with you too. My heart pounds/races during these episodes and sometimes feels palpy as well. Anxiety also goes through the roof because you're thinking, "What the h*** is going on?!" If you can try to take vitals when you're feeling unwell, it may uncover something for you.
  25. My husband works third shift and is gone for about 12 hours with drive time, so I am home alone at night with our young daughter for long stretches. We also live in a rural area about 10-15 minutes from town/nearest hospital. The first time I had to call the ambulance, they actually got stuck by a train and the same thing happened when they were trying to transport me to the hospital. So that's fun 😩 My parents live about the same distance away and are fine with us spending the night there, but I'm trying to stay home and stay on our schedule. I also kind of want to force myself to get over my fear of being home alone too - this illness has taken a lot and I don't want to give up my independence completely. I totally understand the anxiety that comes along with being alone and never knowing when symptoms might hit. I keep my cell phone on me at all times and do my best to stay distracted by watching TV, reading, crafting, etc. If I let my mind wander, up goes the anxiety and what ifs! Texting with friends/family also seems to help and keeps me preoccupied. Do you have friends who may be able to come visit during the day a few times per week to break up the long stretches?
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