RecipeForDisaster
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Posts posted by RecipeForDisaster
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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.
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3 hours ago, Sarah Tee said:
Thanks @MikeOand @Pistolfor your replies.
I was quite surprised today to hear from my specialist that he has arranged for me to try one session of albumin plus saline. There's so little documentation on it out there that I expected him to refuse.
It will be on Monday week.
It is a long shot. I will report back.
Even if it doesn't work for me, at least my specialist and the registrar at the hospital now know about it as a possible treatment. Who knows, they may use it in future on someone with really bad refractory OI/POTS.
If it does work for me, I will ask my specialist to write me up as a case study!
Here's a story about a young woman in Canada being treated by Dr Siddiqi with albumin:
https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019
I wonder how she is doing now.
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My auto-immune panel came back normal, but it was a basic one. Thank you for the study link, @Pistol. I will need to read up a bit more. I have heard of the innate immune system but my knowledge in that area is sadly lacking.
It's hard trying to learn about all this without much background in biology or medicine. I noticed that the video lectures from this year's Dysautonomia International conference are trickling out. I should have signed up, it wasn't expensive. (Maybe I still can.) There might be some more on the immune aspect.
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Hope everyone has a decent weekend. I am going to help my dad with a small DIY job. I sit nearby and pass him things 🙂
That’s amazing! I am inspired by your doctor doing that. I would have expected anyone to refuse. It’s hard enough to get saline or LR in many cases! Good luck - I hope it is really helpful.
That sounds great about helping your dad. I would love to do that. It’s my speed these days!
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21 minutes ago, TorturedSoul said:
@Sarah Teeyes! I've looked at his research and his research on hyperventilation as a cause of POTS symptoms intrigued me. I also didn't want to a standard tilt table test. At Brigham they also monitor cerebral blood flow in all positions and that's one of my biggest issues. I chronically feel like the blood flow to my brain is disrupted )chronic lightheadedness, brain fog, etc) It feels so severe yet I never faint.
This test was very helpful for me. I think he is great if you have something unusual.
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8 hours ago, JennKay said:
@MikeO and @RecipeForDisaster -- thanks for sharing your experiences! I think I might give a CCB a try. I saw my EP today, which is why I asked about the CCB here, and he said he had no problem letting me test it out. If it doesnt work then I can just stick with my current routine...or maybe consider flecainide if I get super desperate...
@RecipeForDisaster -- what dose of diltiazem did you try? My EP prescribed the same one. Not sure the dose yet. Will pick up the prescription tomorrow.
I started with 30mg and went up to 120mg. I just had a weird "helium" or floating sensation in my chest when I took it. It has a short half life (unless you have the ER/CD version), so probably fine to try. Acebutolol has been good for palpitations in general, PVCs, and it hasn’t dropped my BP. I don’t see it used much, though.
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I was also offered flecainide, but ended up using acebutolol during the day - it’s a beta blocker but with anti-arrhythmic properties. I take metoprolol at night, but that’s more for the pounding. I did try diltiazem, but it didn’t make me feel any better and it lowered my already low BP. The other meds I still take have not done that.
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I get this when my BP is dropping, I change positions, or am about to pass out. It’ll go all the way to black if I don’t sit/lay back down.
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11 hours ago, Sarah Tee said:
Oh, I really hope it does help eventually. Do you have have it at Dr Novak’s clinic, or can you have it at your local hospital if you are not near Brigham? I hope it’s not too gruelling to access.
I am still puddling away in Australia trying to get my basic saline infusions, which were ordered in February.
I’m about 2 hours from Brigham. I get IVIG at home, though. It’s much better that way. It was a lot of work to set up and took months. Plus, it’s extremely expensive.
It took me forever to get my IV fluids set up, but I am good now, and have lots of them on hand. I’m so grateful for that safety net.
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2 hours ago, Sarah Tee said:
@RecipeForDisaster, just wanted to say that I have heard of HYCH 🙂
Were you diagnosed by Dr Novak? I try to read everything he publishes, even though some of goes over my head. He seems to be the only person researching undifferentiated chronic OI. I suspect I have OCHOS, one of his discoveries.
Yes. I don’t see a lot about it other than what he writes. It’s too bad it isn’t known by most anyone…
I definitely have an autoimmune component, so I am now getting IVIG, which I qualified for because of the autoimmune small fiber neuropathy. So far, I don't think 3 treatments has helped my dysautonomia, but Dr. Novak said it might take a year.
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I would ask your insurance for recommendations - I use OptionCare, but I have Blue Cross and am not near you.
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13 hours ago, MikeO said:
Well at one time i was ok with doing a short stint with steroids. At one point i would have boasted i could go the extra mile (more energy). Wind up later with more health issues and more powerful drugs being taken may want to think about taking these. I did recently a bad go with them just to find out that these interact with meds more than one would think.
I was even on one of the lesser evil (prednisone) and it did raise my bp and even after taking a nitro tab it did not fall. From what i have read Hydrocortisone (Cortef) has higher number of side effects and some serious drug interactions. May want to weigh the risk vs rewards. Just my 2 cents.
Yeah, I had to take prednisone for years for my asthma. It was not too great. It’s tough, because a lot of the stuff I am using is not that benign, and having such low BP all the time isn’t good for your organs. I suspect the doctors would agree, though - bone density, infection risk, eye problems are reasons to avoid steroids if you can. The methylprednisolone does a great job of keeping me up all night, even though I don’t get an increased BP from it.
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On 10/17/2022 at 8:45 PM, DysautonmiaMatt said:
MethyPred is not a bio-identical hormone like Cortef so it maybe worth mentioning as a trial at 20mg total day dose. I have taken Medrol before and felt awful on it but feel good on Cortef. Was your aldosterone low with high renin? I do not need a high dose of Fludo, only 1/4 pill. Too much and I get side effects. Most docs put patients on the entire pill which can be too much - was for me. What was your K while on Fludo? Maybe they had you on too high of a dose. The yellow fludos have less side effects than white ones for me at least. For a long time only the white pills were available.
My aldosterone was normal, as was my K(I eat a lot of vegetables). I tried 1/4 tablet and 1/2 tablet - no dice. Most importantly, I didn’t get a benefit after years, so it was not worth the migraines and edema. I don’t get it, though.
Good to know about the Cortef. I think I’ll have trouble getting anyone to try it.
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15 minutes ago, DysautonmiaMatt said:
That is frustrating. For Labcorp the range for ADH/Vasopressin is 0-4.7 so that is a very wide range - including 0. Whoever orders the test would have to know the optimal value. Mine was mid range last test. Are you on Fludo to boost your Na? Cortisol also boosts BP. Have they tried you on 20mg of Cortef for a brief trial to see if your BP goes up? Before doing so best they do a ACTH stim test after running serum 8am cortisol, CBG, ACTH. I have been through all this because I have Addison's disease. Just some info to think about.
I remember reading that. I think it was low, but not 0. Sounds silly, specifically if I’m hyped up to go to the lab in the city and get stuck. Shouldn’t be too low.
I always wondered about trying a steroid. I get 100mg methyprednisolone before my IVIG 2 days every 6 weeks, but I don’t get to see if it helps, because the IVIG messes me all up. I don’t think anyone wants to try steroids, though. I don’t get an appetite or a BP boost with the IVIG steroids - but who knows, lots going on there. I get IV fluids those days, too.
I did poorly on fludrocortisone - somehow it didn’t help me, but I had lots of edema and migraines. I never understood it. I do better on licorice. I had 2 big endocrine work ups and 3 ACTH stims - OK. My renin is pretty high, but that makes sense with my low BP.
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1 hour ago, DysautonmiaMatt said:
My endo said it was too dangerous because it could lower Na if I remember correctly. Have they ever tested your vasopressin levels? You on the pill or nasal spray?
Yes, vasopressin was OK. I use the pills, partly so I can split doses if I need to. It’s a double edged sword for me. My sodium runs low, but my BP is really low. I need all the help I can get with that, and I can’t always do IV fluids.
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51 minutes ago, MikeO said:
I did have to look up DDAVP. Has been around a while. At least i am not bed wetting (Haha) it does help with nocturia but so does elevating the head of your bed. It is also indicated in a type of diabetes (peeing big time and then peeing out big volumes again) I also did read it will lower your NA. Maybe something to look at.
I’ve had the head of my bed raised for years. It might have helped, but not enough… I don’t have nocturia, really, I just pee out whatever I drink all day. Even if it’s salty. I have trouble with low sodium anyway… but it’s worth it, because my BP is so low. We know it’s a risk, so I try to use it as little as I can.
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9 hours ago, DysautonmiaMatt said:
How has your experience been with DDAVP? My endo is scared of it but I drink water and pee and pee. Would be nice to retain my fluids better.
It helps me somewhat. Maybe 1/3 as much as a liter of fluids. I get bad headaches and low sodium(despite 15gm of it daily) if I take it daily, so I try to keep it to every other day. Most of my doctors were scared of it, but I keep getting worse, so they get more desperate.
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1 hour ago, DysautonmiaMatt said:
The dose of Propranolol I take does not effect my BP but controls heart rate. Atenolol I tried for a bit but could not tolerate it well - made my fatigue much worse and it did lower my BP some even at 25mg dose.
Ditto for me - metoprolol has not lowered my BP, although I was afraid of that at first. We did a ton of readings, hourly at the beginning, to make sure.
Ivabradine is actually a funny channel blocker, which is why it acts differently from beta blockers.
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I don’t have POTS but my BP is very low, and tough to bring up. I have about 5 other meds I use for this (from pyridostigmine to DDAVP) - and midodrine doses can get up pretty high, so you might be able to use more if your doctor approves. I use IV fluids when things are really bad, or when I need to do better for something.
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13 hours ago, DysautonmiaMatt said:
Have you tried Atenolol?
I think it’s not selective enough - they don’t think that one would safe. Most of them are not for me.
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15 hours ago, MikeO said:
Must be the dang public toilet seats Haha. My current beta blocker has been doing better.
Haha!
It's tough, I can’t really try another due to my BP and asthma. Acebutolol works okay during the day, but I can’t sleep if I take it at dinner or later.
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4 hours ago, MikeO said:
Had the same with the extended release. I would come up about 6 hours short.
I only get about 6 hours out of mine! It’s wild.
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On 10/1/2022 at 3:14 PM, Sushi said:
How did you respond to metoprolol? It came up under the ‘never take’ list for me because I am a poor metabolizer of CYP2D6. I took a test from Asperio Labs, but it is no longer available. Had I not had that test, I would have been prescribed metoprolol. Because of it I was prescribed propranolol instead.
I’m in a tough spot, because I have bad asthma and need to try not to lower my BP at all. I do okay on metoprolol, but it’s out of my system quickly (even with the "24 hour" version). I take acebutolol during the day instead. It makes it hard to sleep, or I’d take that twice a day.
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6 hours ago, MikeO said:
@RecipeForDisasterhere is RPRDx Diagnostics website. good read. https://www.rprdx.com/
Thanks!
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9 hours ago, Sushi said:
I find that pharmacogenetics testing is extremely valuable. The test I had covers a huge number of drugs and even if a drug isn’t covered, once they test your metabolic pathways, you can look up any drug you are considering to see if it is metabolized through a compromised pathway. For me, CYP2D6 is is very compromised and a lot of drugs use this pathway. I am now convinced that many of what we call drug reactions happen because they are metabolized through pathways that are genetically compromised.
I would really like to get this one done! I will try my PCP - I think she said she was not familiar with ordering it, while everyone else said I didn’t need it. I think I am an ultra rapid metabolizer of metoprolol, for instance. Which test did you have?
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I think my mom had this. I don’t have any psych issues, though, and I don’t think any sleep meds I would take would be related… at least by exploring the site. There was a pharmacogenomics test that included cardiac medications - I was still told I didn’t need it, and I tried a whole bunch of doctors. I take like 6 cardiac meds.
We are at our limit. Please, anything will help.
in Dysautonomia Discussion
Posted
Just a couple of quick points… beta blockers can raise blood glucose. Obviously, they mask tachycardia, too. I’m hypovolemic and do OK on a little bit of midodrine. I can’t tolerate very much, but it does help me.
I don’t think heart failure is too likely from this description, but obviously I don’t know. Has she had an echo? My HR was hitting 180 from just walking (I am very fit) before I got it under control with metoprolol. I could not tolerate more than the 75mg I’m on, though. My HR ends up getting too low, and I have escape beats.
Did she have her arms raised when washing her hair? I really can’t tolerate that and it would spike my HR for sure.