Looking_for_light Posted November 26, 2022 Report Share Posted November 26, 2022 How cool. Must mean such a lot to your wife to have you by her side when facing it all! She's so young and with treatment will regain QOL. Medicine sorely needs people like you! Link to comment Share on other sites More sharing options...
Pistol Posted November 26, 2022 Report Share Posted November 26, 2022 5 hours ago, Looking_for_light said: As well as feeling horrendous for sufferers, does the increased circulation of stress hormones in H P and lots of adrenaline dumps etc do permanent damage the body (with no treatment)?! Not that I am aware of. I used to take seizures from not enough circulation due to excessive vasoconstriction, and they suspected that these could cause some permanent damage, but that was ruled out after MRIs and neurological evaluations. But I do think that the constant level of high stress that the increased adrenaline causes may result in negative effects. Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 It's been difficult. The hardest part is just keeping her spirits high to try new treatments. When something doesn't work, the air of discouragement is so thick you can cut it with a knife. I'm prone to depressive episodes as well, so it's been "keep myself afloat so I can keep her afloat". There have been times when I broke. In fact, the first post in this thread was from a sleepless night, desperate for help. We're trying a regimen of water and electrolytes (Gatorade Zero, because it's the one that she likes), iron-heavy foods, vitamin C and as much sodium as I can get in to her diet. If there's symptom and vital improvement, we'll re-trial Midodrine. The main thing I'm looking for is a lower diastolic pressure and lower average heart rate. By the by, if anybody's looking for recommendations, FitBit + Cardiogram apps are lifesavers. Cardiogram enables you to view historic heart rate data on a minute-by-minute basis and give it to your healthcare provider for analysis. She has a FitBit Sense and between that, a blood pressure cuff and a continuous glucose monitor, we have her vitals on lock. I wish they made a continuous BP monitor that wasn't awkward or expensive. Link to comment Share on other sites More sharing options...
MTRJ75 Posted November 27, 2022 Report Share Posted November 27, 2022 58 minutes ago, rtoth256 said: It's been difficult. The hardest part is just keeping her spirits high to try new treatments. When something doesn't work, the air of discouragement is so thick you can cut it with a knife. I'm prone to depressive episodes as well, so it's been "keep myself afloat so I can keep her afloat". There have been times when I broke. In fact, the first post in this thread was from a sleepless night, desperate for help. Consider looking into one of the various brain retraining programs too. Stress, frustration and impatience are only going to make things much worse. Accept that you're in for the long run, but improvement is possible if not even likely. Try not to get discouraged and appreciate even small improvements. The comprehensive timeline in the original post looks very much like what I often bring doctors. Keep doing it. Finding the right doctor(s) is a lot like finding the right medications. It's been a lot of trial and error. If you can't find the most knowledgeable ones, the second best thing you can do is find ones who listen and are willing to get you where and what you need. Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 Her endocrinologist has been incredibly helpful and is willing/ready to do, essentially, whatever we ask. She's a diamond in the rough, but primary care centers are very limited in terms of expertise, and secondary/tertiary care is occupied by high-risk patients. Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 1 hour ago, DysautonmiaMatt said: Has she been tested by a lyme literate doctor? No, but she's also not been anywhere that ticks are present. Presence of a bite was also ruled out as I examined her myself. Link to comment Share on other sites More sharing options...
KiminOrlando Posted November 27, 2022 Report Share Posted November 27, 2022 I just remembered, Midodrine caused headaches in me. Any chance the headaches coincide with midodrine usage? Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 25 minutes ago, KiminOrlando said: Any chance the headaches coincide with midodrine usage? Nope, headache started and kept going independent of midodrine usage. In fact, I think it worsened it at some points. Findings from tonight... Fluid intake started. 1L of water taken in, with her drinking as much as she's comfortable with every 30 minutes. Went until we started to see somewhat clear urine, swapped to Gatorade Zero to replenish some electrolytes. Slowly spaced out to 45 minute intervals, then hour intervals, now up to 2 hour intervals to let fluids settle. She had a moderate to high carb breakfast, watermelon cubes, several pieces of dark chocolate, a steak seasoned with ~2tsp or more of salt. ~30 minutes after a meal, assessed vitals: Standing BP is elevated. So is supine BP. Diastolic within normal ranges when supine (78-80), systolic in the high 110s (117-120). Heart rate fluctuates when standing. High 60s to mid 90s. Standing BP was nearly normal... elevated diastolic BP (92 to 101), but normal systolic (117 to 123). Heart rate when supine lowered from borderline tachycardic to mid-70s and low 80s. Re-measuring vitals in approximately two hours to rule out postprandial effects. Blood sugar is phenomenal. Within controlled ranges without bolus insulin for a full 12+ hours. Will be monitoring through the night (she isn't normally at risk of hyperglycemia, will bolus if needed). Vitals are starting to indicate that, yeah, she needs an increase in blood volume. Sodium and potassium tablets arrive Monday, iron supplements on December 1st. We'll continue the fluid intake at 1hr intervals with electrolytes. She reported feeling "more energetic" than yesterday... Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 Repeated supine and standing BP measurements. Supine BP is 107/76 to 110/73, showing a slight drop. Standing BP is 116/90 to 119/92, showing a slight drop. Standing is incredibly difficult now, but we'll continue fluids at comfortable intervals. I've read that some hypovolemic patience take weeks to recover just using regular fluids and electrolytes. Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 Sadly, so much really resonates. Hypovol chart - wow! As suspected - fits picture too! My relative's stuck in nightmare with all this, which came on insidiously on top of other totally debilitating, life-limiting chron conditions (suffering myriad dreadful symptoms inc severe pain which seems to enhance the hpa axis aspect) and needs someone to simply acknowledge - "you've been seriously going through it", so doing that for your wife and you right this second. Hang on in there. There's light at the end of the tunnel for you both. Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 Can't even access such electrolytes here! Sound so helpful. Anyone make their own up? Any recipe(s)? Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 For sodium and potassium supplements, we ordered some 500mg/100mg sodium and potassium capsules from Amazon. Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 Heard wrist cuff monitors not as accurate as arm. Can anyone here confirm this? Could you get arm version to compare? Link to comment Share on other sites More sharing options...
rtoth256 Posted November 27, 2022 Author Report Share Posted November 27, 2022 1 minute ago, Looking_for_light said: Could you get arm version to compare? We've got an arm cuff. It's nice, but tempermental: movement disturbs the readings frequently. Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 Great she can tolerate caffeine. Sadly, dark choc high histamine too. Total no-no in our case (devastating)! Link to comment Share on other sites More sharing options...
Pistol Posted November 27, 2022 Report Share Posted November 27, 2022 1 hour ago, Looking_for_light said: Heard wrist cuff monitors not as accurate as arm. Can anyone here confirm this? Yes, my doctors say that wrist cuff monitors are inaccurate in general because they measure the pressure furthest from the heart. They recommend arm cuff devices. In my experience even they are not as accurate as good old fashioned manual cuffs. Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 27, 2022 Report Share Posted November 27, 2022 1 hour ago, Pistol said: Yes, my doctors say that wrist cuff monitors are inaccurate in general because they measure the pressure furthest from the heart. They recommend arm cuff devices. In my experience even they are not as accurate as good old fashioned manual cuffs. My experience too. My IV nurses used to try their good automated arm cuff machine on me, until I invited them to compare it to manual readings. They are usually about 20 points off for me! The wrist cuff readings are even more random. It’s all manual arm cuff for me. Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 @DysautonmiaMatt Wasn't aware K came in supplements. What are the reasons to be wary of them? Thanks! Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 @DysautonmiaMatt Oh dear - SR won't be accessible here. Medics would probably laugh! Honestly, it's heartbreaking. Anyone tried half a 99mg normal release tablet a day? With lots of fluid, would this be too much strain on kidneys? Sadly, avos no go - unmanaged suspected mcas! H1 blockers v limited and inadequate otc here, and H2 not even available otc!! That said, ? if stomach acid already low, and if lowered further would create extra vulnerability to infection in poor immunity situation! Also, now concerned about H1 vasoconstriction effect. @Pistol can you elaborate on this? You have enough to contend with - must be such a relief to not have that extra complicating burden! Gosh, it's all super complex!! Thanks! Link to comment Share on other sites More sharing options...
rtoth256 Posted November 28, 2022 Author Report Share Posted November 28, 2022 Fluid Therapy Day 2. Supine BP and heart rate were.. surprisingly normal? BP 120/81, HR 78. Standing BP was improved. 112/93 to 114/98. Excessive heart rates keep her down: 99 to 108 and above. The improvements we're noting don't seem to affect her acrocyanosis, but... 300mg of Metoprolol Succinate was administered... her feet and legs turned from solid red to splotchy red. May indicate slight improvement on venous return? BP drop not ideal. Ivabradine would be ideal to control heart rate, with fluids to keep BP up. Increased iron as well as vitamin C intake. Dark circles under eyes seem to have dampened ever so slightly. So far, we're cycling around 1.5L of fluid and electrolytes through her per day. Small improvements in some areas, though I'm starting to think she's both hypovolemic and hyperadrenergic: we were able to raise her BP just through mild hydration and sodium intake, but her heart rate is still out of control. The acrocyanosis response took me by surprise. I know it doesn't exactly correlate with blood pooling but capillary refill delay suggests that it's somehow related. How, I'm not sure. We have a prescription for Ivabradine that's still being "approved" by insurance.. Irritating. Link to comment Share on other sites More sharing options...
Pistol Posted November 28, 2022 Report Share Posted November 28, 2022 @rtoth256 what is recommended - and I find extremely helpful when bedridden - are supine exercises that strengthen leg muscles and abdominal muscles. These muscles are essential in returning blood to the heart and prevent pooling. Examples are scissor exercises, bike riding in bed, crunches. The more we lay in bed the more we get deconditioned, which in turn makes symptoms worse. I do these exercises every hour or so when bedridden and then slowly graduate to sitting exercises, but these I do carefully. Eventually standing up - supported - for brief moments is possible. Compression hose ( waist high if tolerated ) is also recommended. Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 28, 2022 Report Share Posted November 28, 2022 @DysautonmiaMatt No, nothing - it's a desert with no oasis! Things are so challenging we can't do Christmas gifts, but if Santa was taking requests it would be a sack of pepcid, xyzal, vitassiums etc, Sadly, on screen miracles don't happen in real life. Thyroid needs checking - accessing full panel also known to be an absolute nightmare though!! Thanks! Link to comment Share on other sites More sharing options...
rtoth256 Posted November 29, 2022 Author Report Share Posted November 29, 2022 Small update, we have the sodium and potassium supplements. Individual capsules are 500mg sodium and 100mg potassium, I'm starting her off at her doctor's recommended 5-8g dosage, but spreading the dosage over several hours and measuring BP/HR in between. 3, 2, 2, 3 over the course of 8 hours roughly corresponds to waking up, meal times, then enough of a dose to get her through the night to the morning. I'm curious how others dose this, as I'm wary of overloading her with sodium all at once. 1.5g of sodium now, 1g of sodium in about 2 hours, drinking every 30 minutes. Hopefully this will help.. her BP is significantly low when standing again, but that's also due to a drop in her sodium intake. Link to comment Share on other sites More sharing options...
rtoth256 Posted November 29, 2022 Author Report Share Posted November 29, 2022 So far, not working. She's got 2.5g of sodium, 500mg of potassium and nearly 1L of fluid, and her supine blood pressure is significantly lower: 98/60. Her standing blood pressure is also lower: 104/87, 107/87 and 103/85... We still have about 2.5g of sodium and 500mg of potassium to go, as well as another .5L or more. I'm starting to think this might not be working... but I'm giving it time. I can feel her discouragement. EDIT: Done for tonight. No more dosing.. will take pulse manually when she wakes up, BP cuff reported a weak pulse/double beats. I worry she may be falling into arrhythmia, or this cuff is garbage. Did not expect a BP drop. Link to comment Share on other sites More sharing options...
rtoth256 Posted November 29, 2022 Author Report Share Posted November 29, 2022 Small note, she's prone to myoclonus when trying to sleep.. adding that to the list of symptoms. Link to comment Share on other sites More sharing options...
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