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Mbritt724

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Everything posted by Mbritt724

  1. Thank you so much for all of your answers! I am ordering the same brand on amazon now 🤗
  2. Ah, interesting- that makes sense, the tricking cortisol idea. Thank you for your response! I was able to manage low BP swings with tons of hydration and increased salt/ vitassium pills, but am finding I need something more now. Do you know about how long it worked before you began tolerating it? Was it only a few weeks, or months? And did you take pill form or tea? Thank you 😊
  3. Did the licorice root help increase aldosterone levels? Which then increased overall blood volume?
  4. Any tips from the pros for convincing a doctor to write an RX for monthly or bi-monthly IV fluids? I've found that 2-3 days after my cycle every month my BP is low for me (averaging around 85/55) and that IV fluids seem to help tremendously. I've gone to an overpriced IV Hydration "Bar" the past few months and have asked my GP and Electrophys to write a letter to insurance to submit my receipts for reimbursement or an RX to receive hydration in office, but they will not do it. I guess, once again, it boils down to many doctors not understanding dysautonomia. Any suggestions on what you've done to convince your doctors it is needed, or should I just suck it up and pay $100+ for IV fluids on my own?
  5. Definitely! This is why I’m going to this specific endo, because I have a feeling the others are perfectly content skimming the surface 🙄 Thank you!!
  6. I actually have an appointment with an endo who specializes in thyroid in two weeks, so i'll be tested then. all other GPs have said "normal", but sometimes I feel like they don't look deep enough or consider patients as an individual who may be slightly different than their "normal" range. I will ask about hashi testing for sure! Thank you
  7. It has literally changed my life. Salt pills made me feel terrible and upset my stomach, this has not been an issue at all! I started with one pill at a time just to make sure I could handle it okay, and find that I really only need one at a time except on really bad low BP days (typically around my time of the month). I can’t recommend them enough
  8. Hypo, never hashis. Thyroid was the first thing I thought was going on when all of this started... but all is fine on that front as of now!
  9. Yes, I’ve had hypothyroidism for about ten years... started when I was 17.
  10. I’m so sorry to hear you’re going through all of this, the beginning stages of navigating all the changes can be so overwhelming! I know you mentioned salt and fluid increases already, but two things that I’ve found life changing for both of those things have been the Salt Stick Vitassium pills (got mine on amazon) and Drip Drop brand electrolyte packets (I drink 1-3 a day). Before these things I was already drinking tons of fluids and eating more salt, but both of these brands have a perfect combo of electrolytes & potassium/sodium. Compression stockings, as mentioned already, are helpful and even just forcing yourself to walk or move around (I know it’s hard when you feel so “yuck” ;-/)... I also found that sleeping propped up seems to help tremendously. I hope you’re able to get into your next appointments soon for continued testing - I know the waiting can be horrible!
  11. Thank you for responding so far, they’ve only diagnosed me with hypotension, but I think the hyper may be a possibility too (just not diagnosed yet) because I definitely have those symptoms too.
  12. Kind of along these lines with quick BPswings that are undetectable, does anyone else get clammy hands/feet and feel hot during low blood pressure drops or days the BP is running lower?
  13. Amen to what @WinterSown said about your friends - people try to write it off but only YOU Know your body & dysautonomia can be so unpredictable!
  14. So sorry you’re going through all of this! I know it can be scary and so unsettling. my dysautonomia symptoms actually started much like this, and they were all over the map and confusing in regards to times of day and such I think the falling asleep and night tachy is a very common symptom for many of us- it’s just that our autonomic nervous systems aren’t quite doing what they’re supposed to as our bodies settle down to go to sleep & it’s like they get stuck in a fight or flight mode. The same thing would happen to me in the beginning, but it would typically wake me up two hours after falling asleep... tight throat, racing heart... then I would be crazy anxious thinking “what in the world is happening!”. I ended up being prescribed a sleeping pill for the first few months of my journey and it helped significantly... almost like my body needed to be “retrained” on what it was supposed to do at bedtime. That said, they did a 7-day holter heart rate monitor before prescribing anything, just to rule out any arrhythmias. Might be something to ask for next? A cardiologist or electrophysiologist would do that for you. One of my doctors has said that many times dysautonomia symptoms are triggered by varying levels of cortisol and hormones, so I’m wondering if the feeling better at night after dinner has something to do with that? Our hormones and cortisol levels change throughout the day & could be triggering changes in overall blood pressure or other ANS regulated things. An endocrinologist would probably be a great one to look into that!
  15. Check out the dysautonomia-mvp center in Birmingham, Alabama. I have two friends who have gone there
  16. Very interesting. Did the heart rate monitor pick up anything? I wore two different types this summer, an event monitor (which I would have to push to activate when feeling weird... dumb in my opinion because i couldn’t predict when I would suddenly feel weird) & a second carnation ambulatory 24-7 one for 7 days. My Apple Watch will register having low heart rates but the electrophysiologist said the heart rate monitor never dropped lower than 58 bpm... so I’m just curious if yours picked anything up?
  17. That is SO good to know! That's what my electrophysiologist said too... have you ever worn a 24-hour BP monitor? I'd be interested to know more about what BP med you're on & how long you've been on it/if you've noticed any changes/improvement on it?
  18. I get the exact same thing and it’s one of the symptoms that drove me to push for so many tests and ultimately reach my diagnosis. Can definitely relate to the frustration of not knowing the root when doctors say BP and heart rate are fine! One doctor did tell me that he thinks it could be quick drops in BP that happen and then I feel the after effects a mknjtr or so later, so my BP monitor doesn’t catch it. I have found that the days I’m the most woozy and dizzy, my bp runs a little lower than my “good” days. I was just diagnosed in July, so am still learning, but I’ve found that days when I don’t get enough deep rest & coming off of a day or two with a lot of activity or stress I feel the dizziness the most. Increasing my blood volume with hydration & salt ( Salt Stick pills and Drip Drop drink packets) seems to help a lot. I also find that the days when I don’t get up and do something fairly active early on (at least on the days when I feel good), I seem to have more dizziness.
  19. I live in North Carolina, so the hurricane is definitely heading our way! These strange BP changes started before the threat though, so not sure if it's tied to it this time... that said, VERY interesting to note on the menstrual cycle. I had read some study a while ago about estrogen influencing BP, so that would make sense. I guess I should be aware/more sensitive to water & salt intake during that time of the month.
  20. Thank you, that's super helpful. I think I will ask to have my levels tested simply because I went from a normal diet to a high-salt diet in a very short amount of time. I just want to ensure i'm not completely out of balance. Thanks for tip on V8, I had actually randomly thought of that the other day and will definitely grab some. Thanks, also for tips on what your BP is here and there! Also helpful
  21. I had been managing my random drops in blood pressure well with salt stick pills, drip drop, nuun and tons of water... but today kicked off with a bang when I woke up to feeling like I was fainting in my sleep. Strange, but only way to describe & I could tell instantly it had something to do with my BP. Sure enough, blood pressure has been low (93/59-ish) most of today (this is low for me), with a few lower swings...despite all the water & sodium, I’m feeling super weak & dizzy. Questions: - should I have blood work to ensure this sudden onset of more sodium in my body isn’t causing an electrolyte imbalance (like causing potassium levels to be off)? Does that happen? - And does anyone have any tips for days when BP swings? - Any idea what could cause it to be lower today after so many good days? Maybe hormones? Or is this simply part of living with dysautonomia & never really knowing?
  22. Yes thank you! I've seen that list, but have noticed that most of the docs have specialties (e.g.: POTs, Ehlers Danos, etc.)... will doctors take on new patients who have yet to have an official, specific dys diagnosis? I called one at Duke and they said she was only taking POTs patients...
  23. I'm all for a holistic approach - I'm really not wanting to load an already upside-down ANS with a bunch of unnatural meds! I actually have an appointment with a functional medicine doctor who has helped a handful of people i know with Lymes and autoimmune things and I'm hopeful he will be able to help or at least recommend next steps for healing the whole issue rather than bandaid-ing the symptoms!
  24. Thank you, all! I would like to get to the root of it all and figure out the why behind it. While the salt/water is helping, it's not 100% and I'm still dizzy and lightheaded a lot of days.The blanket statement of "you have dysautonomia" is as vague as "you have an autoimmune disorder" & I feel like it could be 1,000 different things. @bomb3ll3: Paxil rationale is that many patients with dysautonomia go on an SSRI briefly to help calm their ANS ... I actually haven't started it yet because I'm weary of any new drugs, especially brain altering ones... ugh. @pistol: thank you so much, i appreciate you giving me the insight that dysautonomia itself can shift & change. i'm eager to find the root for this for sure! @stayathomemom: Thank you for your feedback, too. I'm just feeling at a loss as to who/what type of doctor I should go to next? Mostly because all of the specialists I've found listed online specialize in POTS, ED, NCS, etc... since I haven't "officially" been DX with anything specific, I don't even know who to go to 😕 Do I just try to find a general automatic specialist and go from there? Not that it's any different than anyone else's story, but I've already been to two cardiologists, an electrophys (the one who finally dx), an OBGYN, an endo, and two GPs (just because the first one completely dismissed me when it all started and tried to write me xanax for "anxiety").
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