RecipeForDisaster

I’m inadvertently trying this now - I have aseptic meningitis from IVIG, and was prescribed oral steroids for it (plus the IV pretreatment I always get). We’ll see what it helps! I’m starting with 10mg prednisone, which is probably not enough. I can take 20mg.

10 hours ago, MikeO said:

This is an interesting article. Sure this rules me out as i have changes in BP.s and HR.

Oddly, I have stubbornly low BP regardless of position. I feel worse upright, partly because my BP is really too low to stand (I do anyway) and partly because of that decrease in cerebral circulation. My HR is similarly too fast all the time, though controlled with beta blockers now. To make things more complicated, I hate cities, traffic, traveling to hospitals, etc. and always have much better BP readings while there. It’s still trending down each visit, but 30 points or so higher than what I would be at home an hour after getting there.

9 hours ago, Sarah Tee said:

@Horizons1, I do hope this cardiologist will be helpful.

Many people report that their symptoms vary - could be according to time of day; from one day to another ("good days" and "bad days"); or over longer periods of weeks, months or even years. (And some people don't get much variation.) Sometimes people can identify a trigger that makes things worse, such as overdoing things, catching a bug, or hot weather; sometimes a flare comes on for no apparent reason.

So the fact that your symptoms vary does not mean that it's not real, or not dysautonomia.

I have what's called chronic orthostatic intolerance - symptoms quite similar to POTS but my blood pressure and heart rate are normal. There are many variations in autonomic dysfunction. It's not well studied yet and researchers and doctors are still trying to group symptoms into syndromes (collections of symptoms) to try to get to grips with these conditions.

Just as an example, here is an article on some recent research on patients who were suffering from orthostatic intolerance but had normal blood pressure and heart rate readings day to day and on tilt table testing. When researchers looked at these patients using different measures, they identified two new syndromes.

https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

 

I go to Brigham and Womens, and they did find HYCH. It doesn’t explain everything, but at least it’s a label. Still, one of my local cardiologists pronounced my TTT Doppler results as a normal response. It said "37% decrease in cerebral blood flow compared to normal"…. Umm…

9 minutes ago, MTRJ75 said:

Isn't heart failure more of a blockage than volume thing? 

Last time I went to the doctor, I saw on the computer screen something about chronic kidney disease. Nobody had ever mentioned this to me, but it must be something that showed up on blood work at some point. I'm wondering if that was a blood volume thing also. I do notice there's a large difference in my bloodwork results all around when I go in after a glass or two of water an hour or so before vs not drinking anything and probably being a bit dehydrated. 

They are worried about too much blood volume in heart failure. Knowing helps them to manage diuretics and stuff. The kidney disease may have been in reference to dosing a Med - many have special dosing in that case.

17 hours ago, ShupeJL10 said:

@RecipeForDisasterhow close together do you do your iv fluids to your DDAVP?

I’ve messed around with taking DDAVP the same day as fluids, before, after… I have to be a little careful because DDAVP and 2L fluids on the same day makes me swell up and get migraines. I hoped that would be the ticket - combining them.

IV iron helped my ferritin levels and anemia, but not really how I was doing. IVIG helps my neuropathy, but hasn’t helped the low BP/autonomic dysfunction and stuff. It’s only been 6 months and I’m supposed to give it 1-2 years.

IV fluids seem to help me for a time period about equal to how long I run them - I do 2L a day, and if I stay connected for 36 hours, I am better for another 36 hours after that. It’s worth it, but not great.

I really want to find my root cause, too. And I’d love to get my blood volume tested.

I can feel my sodium dipping. It’s not a good feeling. I know I have to back off on DDAVP in that case, but I also get daily migraines if I take it daily. I pee far too often, unless I am getting fluids IV vs. drinking them, and then I don’t!

1 hour ago, ShupeJL10 said:

@RecipeForDisasteroh I gotcha! Yeah I do iv fluids every day with my picc and I was found to be low on both red cells and plasma, we are still trying to figure out why, but even the IVs aren’t enough. I’m gonna be on a fludro+desmo combo hoping that helps 

Did you have a blood volume test? I know I’d feel better with daily fluids, but I have to watch it, so I have some veins left to use for fluids, iron, and IVIG. I don’t think mine leak, but while I’ve cleared a nephrology workup, I just seem to discard anything I drink, no matter how salty.

I need IV fluids, too. I use DDAVP which helps somewhat, but I have to be careful of low sodium levels. I eat 15+ grams of salt a day(along with 4L fluid orally), but still run low. I didn’t tolerate fludrocortisone due to migraines, edema, and not a whole lot of benefit, but that’s unusual. I’m on a slew of other meds, too. I use IV fluids when things are really bad - because I can’t have a PICC or port.

I’m very interested in having this done. I haven’t had any doctors interested enough to order it, partly because they don’t know what they’d do with the results. 

2 hours ago, MikeO said:

I have asthma as well. And like you i am on a low dose of a beta-blocker. 50 mg of metoprolol ER was ok but last year i switched to the equivalent of Carvedilol. So far has not agitated the asthma. My heart rates have been a bit higher but i do not feel the palpitations as much until i hit the 110 mark or so or my butt starts hurting (Lol).

Sounds like you are in the know.

  

Good to know. My friend loves her carvedilol. I can feel palpitations at a HR of 70, but they are worse and different over 90. I happen to do pharmacy for a living  I hate being on this side of the bench… 

4 hours ago, MikeO said:

Not sure how cheap you can get  ivabradine for yet. I did talk to my diabetes trainer about buying medical supplies thru Canada she did mention that when Plavix first came out it was so expensive that the would send prescriptions to be filled in Canada for folks that could not afford the drug. Fortunately i can find diabetes testing supplies at a reasonable cost in the US. 17 cents a testing stick vs  $1.50 a stick and allows me to test more frequently.

It is possible to find "Cost Plus" pharmacies in the US that pretty much take out the middleman cost of prescription drugs (fraction of the cost).   

   

Yeah, I always look at Cost Plus, but they don’t have all meds yet. Ivabradine is $85 a month copay. I can ask my cardiologist about Canada, but we went back and forth for months about how I could or could not swing it, so I am betting he doesn’t want to do it this way.
 

I have to be really careful with my asthma and am on low doses of both my beta blockers - I also have to try not to lower my BP at all. It’s tough to rock the boat. I also really like the anti arrhythmic property of the acebutolol, which I take in the morning, because I don’t feel PVCs during the day anymore.

On 1/6/2023 at 10:15 PM, Jason_X said:

I live in the US, but I get my Ivabradine and Bystolic (Nebivolol) from a pharmacy in Canada. It's about one-tenth the cost of what they charge in the US. My cardiologist will FAX the prescription to them.  My insurance refuses to pay for both Ivabradine and Bystolic unless I have actual heart failure.  Acebutolol made me incredibly tired and severely disrupted my sleep.

I only take acebutolol in the morning, because it disrupted my sleep, too. I take metoprolol at night. I am still thinking about trying ivabradine, maybe through a Canadian pharmacy - though I think my doctor would have offered that if he deemed it an option. He knows I didn’t try it sheerly due to cost. I can’t use bystolic because of asthma.

4 hours ago, Sushi said:

I also do not have POTS but rather NCS or neurally mediated hypotension. A lot of these categories cross over. I don’t actually pass out because I get enough warning in order to sit down – if I didn’t I would pass out. Yes, NCS is sometimes responsive to different treatments than POTS. You are not alone here!

Me, too - if I listen to the warnings, which get "louder and louder", I don’t usually pass out. That makes me sound less sick than I am. I am frequently having to sit or abruptly lay down to avoid passing out. If I don’t, I’ll lose my vision, hearing, and ability to stand, usually in that order - though lately it’s been a nice surprise to see which one will go first. That normally happens in public or in other situations where I really don’t want to sit on the road, or something like that.

Another non-POTS-er here - I have dysautonomia and HYCH, plus autoimmune small fiber neuropathy and lots of other stuff. It can be called orthostatic intolerance, orthostatic hypotension, etc. I have a lot of labels, but POTS isn’t one of them. I would agree that the other stuff is slower to diagnose… but most of the treatment overlaps.

19 hours ago, Wanderland said:

Got it. So overall it really won't matter what my heart rate is doing. I do have an arrhythmia, but that is such a rare thing. I wonder why it even gets used for a potential POTS diagnosis if the bpm isnt enough to be flagged?

 

Makes me wonder what my cardiologist hopes to get out of it. 7 years ago I did the treadmill stress test and momentarily blacked out but my heart rate was "normal" so that cardiologist said "it must be because you got overheated that you blacked out". 6 years ago I did a tilt table test and blacked out around minute 16 but my heart rate didn't do what was considered typical for a POTS patient so cardiologist #2 said "you have orthostatic intolerance". Now I'm on to cardiologist #3 and I'm doing the treadmill stress test again plus the 2 week heart monitor.

I wouldn't be surprised if I end up being in the same "general dysautonomia" and "orthostatic intolerance" category again if nothing really is noted on a 2 week heart monitor. My heart rate doesn't usually get above 145 before it drops to 35 bpm. It's happens quickly for me, but usually if I stop whatever I'm doing and rest for a couple of minutes it goes back into a normal range. So I know I'm not as severe as what some people may experience, but now I question on how the heart monitor is helpful from a data perspective. 

 

For me, yeah, not really. I think it it was too slow, they would have been impressed. I think they are more ruling out dangerous stuff, at least in my case. Without having data showing whether you’re standing or sitting, I can’t imagine they could use it for POTS. I bet they’d be excited about a HR in the 30s, particularly if it’s a big, dramatic drop like that!

I don’t have POTS, but do have HYCH, formerly known as just dysautonomia, orthostatic intolerance, etc. They diagnosed this with cranial Doppler during a TTT. I had 2 inconclusive TTTs before that… I didn’t pass out during them, but I usually don’t when I am stressed from the trip to a big city, parking woes, etc.

I wouldn’t get my hopes up that something helpful will be seen. I guess you don’t want it to… I’ve worn these for a month at a time 3 times, and my HR hit 180+ from walking around the first time… no one was concerned. They won’t be able to see what you’re doing or the position you’re in, although you can hit the button and record that info in the diary. They are usually looking for arrhythmias and really out of whack rates (although I am surprised 180 doesn’t qualify). I had a lot of PVCs, and they did care about that. I also had a run of ventricular tachycardia, and bigeminy. Again, those got their attention, but my usual dysautonomia stuff was not really of interest to them. YMMV!

8 minutes ago, MikeO said:

As of late i am using the term turn key cardiologists. I just recently fired my faint team for being inept IMO. These folks were not even close to what is going on with me.

They are all at least a little bit useful, or they’d be out. A lot of them write 1-2 Rxs or I like their hospital system or something. A few are really trying. I’m just a complicated mess, I know that.

3 hours ago, Jason_X said:

I don't know if it's direct or not. I just know that it the resting rate drops, the pounding and fatigue drops. I have extra Bystolic pills available for whenever I need something beyond the usual daily dose of Ivabradine + Bystolic.  I've tried lost of beta blockers and Bystolic. is the one that has the fewest side effects.

I've seen several cardiologists over the about 30 years who were clueless about this issue. Some of these were highly recommended cardiologist. When I finally found a cardiologist that knew what I was talking about, he said "Those cardiologists were plumbers. I'm an electrician." I think that the key to finding an effective cardiologist is to find one that is an electrophysiologist.

I have 2 EPs, a couple of plumbers, and 6 total cardiologists. None have been too helpful on this… but one did recommend ivabradine. When it turned out to be too expensive, he put me on acebutolol during the day instead, and it helps somewhat. I still take metoprolol at night. The acebutolol has helped my PVCs a lot.

6 hours ago, Jason_X said:

I was just going to make a similar post tonight when I saw yours.  My heart pounds if the resting rate is elevated the tiniest amount. I feel pounding if the resting rate is around 70 or above. The pounding is worse the higher the resting rate. Any sensation of pounding means I get severely disrupted sleep. I'm a VERY low anxiety person, so it's not anxiety.

I take Ivabradine (Corlanor) 7.5 mg twice daily, and Bystolic 1.25 mg twice a day (1/2 of a 2.5 mg tablet).  This helps quite a bit, but it still disrupts my sleep even my resting rate is even near 70. Tonight, I feel it pounding and it’s only 68. I tried propranolol a long time ago. It did a great job of slowing down my heart, but I felt terrible and it severely disrupted my sleep.  Bystolic seems to be the beta blocker with the least disruptive side effects.

I can drink a LOT of coffee without any significant heart rate elevation, but a single glass of wine (or beer) or a half tablet of Benadryl will shoot it up to 75-80 bpm and I’ll feel terrible and extremely fatigued, but I can’t sleep. Monosodium glutamate or carrageenan will set me off too.

I just checked my blood pressure and it’s slightly elevated (131/77).  I’m not sure, but I’m beginning to suspect that slightly elevated blood pressure may correlate with the sensation of pounding and insomnia. Cardiologists tends to say "it's only mildly elevated. It shouldn't be bothering you." I wonder if I should take some Benadryl  before my next visit.

 

Edit:  I also have stage one gastroparesis and a removed gall bladder.

I can’t drink any wine, even homemade/natural, and I don’t do well with one whole drink of any alcohol. I also feel worse if my HR is over 75-80 while resting. I’ve heard the same - "normal HRs go up to 90”. I ask if they can sleep when laying down with a HR of 90… also very low anxiety here. Interesting about the ivabradine - did it help the pounding directly, or just the rate? 

10 hours ago, MTRJ75 said:

This is usually least concerning of the three types of palpitations I get (skipping and racing the other two). I still often feel it, but I'm not sure if it's either lessened or if over time I'm just paying less attention to it, but at it's worst, it made it very difficult to sleep or relax. 

I'm not sure if there was a specific medication that helped this particular symptom, but I've been doing best with cardiac symptoms with Ivabradine just 2.5mg twice per day (actually, my first dose is still propranolol 10 mg to keep slightly high blood pressure in check). The other med that I believe has helped me most overall is LDN, although I can't say how it would help palpitations. 

I didn’t think ivabradine would help with pounding, just fast rate - if you think it helped, I may try it!

This is one of my most uncomfortable symptoms, which makes it hard to sleep at night. Beta blockers help, but not enough. IV fluids help the most. Anything being "off" makes it much worse - any kind of infection, lack of sleep, eating too much, etc.

9 hours ago, Sarah Tee said:

@RecipeForDisaster, I don’t think I’ve had my serum albumin tested in recent times. I’ve been meaning to check through my records to see if it’s there but haven’t quite got round to it.

Is yours on the high end of the normal range? If so, it is hopefully combining with all that nice saline and enabling it to stick around.

I’m so glad your nausea is gone. I hope you can enjoy a few favourite meals/snacks!

My specialist has ordered me three more sessions. Not sure whether they are to be weekly or fortnightly. The day unit at the hospital is a bit booked up pre-Christmas so there may be a wait, but that is okay. They have been very kind and accommodating so I know they will fit me in as soon as they possibly can.

Yes, mine is near the top of the range and I don’t know why (I sure don’t eat that much protein). Lactated ringers sticks around longer than saline does for me. Hopefully I’ll be able to get it again soon… it was on back order. I’m back to being nauseous, unfortunately. I ate as much as I could over the weekend! I almost feel back to my usual crummy self again - I finished my fluids mid day on Friday, so I’m not surprised.
 

That is wonderful - I love to see people getting to get potential help, especially if it’s outside the box thinking,

20 minutes ago, Sarah Tee said:

I have a small update. I went in to my (sort of) local hospital for an albumin infusion yesterday (Thursday) at 12 noon. It took a while to fill in paperwork and get the IV in and I had to see a doctor and sign a consent form because albumin is a blood product.

The infusion started about 1pm. The exact thing I received is called Albumex 4, a very pretty citrus yellow transparent liquid in a glass bottle. I had two bottles over two hours. (I think the bottles were 500mL each, but will have to double check that.)

I am not sure how my specialist decided on the dose; I will ask him when I see him.

The fluid felt a little cold going in, so the nurse gave me a warmed blanket to wrap around my arm. I felt no other particular sensations and had no side effects.

Towards the end of the first bottle, I started to feel a little better, but didn't want to "jinx it" or imagine anything. By the end of the first bottle, I was sure that I was feeling better. This feeling continued at the same level while I had the second bottle.

The effect of the albumen was to improve all my nasty symptoms. Crushing fatigue, background nausea/lack of appetite, horrible drained feeling in face, brain fog, and facial pallor were all much improved.

However, my physical energy levels did not return to normal. (I still experience normal energy levels a few nights a week when my symptoms go away at about 11pm. I also had a brief taste of normality during the day while taking steroids for an allergy a few months ago.)

I went to bed early on Thursday night so I don't know whether I would have had one of my nighttime remissions.

Today, I noticed I felt less horrible than usual on waking. I was able to stay upright all day. I was able to potter about comfortably, make a simple meal and clean the kitchen a bit, and do a couple of minutes of easy gardening. When I needed a rest, I sat down. (Usually I would need to lie down for half an hour several times a day and would struggle to do much of anything.)

So I can say that it has temporarily fixed my orthostatic intolerance because standing was simply a bit tiring on my legs / lower back rather than making me feel presyncope. Yay!

But I didn't feel like going for a walk or exercising. I applied my personal exercise test: squats. I was able to do 5 in a row (just). When I feel "normal", I can do 20. So I still had low energy and exercise intolerance and struggled a bit climbing the stairs to the upstairs bathroom.

So, to summarise, I felt better but did not feel completely normal.

We are now waiting to see how long the positive effect lasts. If it wears off quickly, then it's probably not worth my having regular infusions given the time to get to the hospital and back and the fact that going there in itself is a bit tiring. But if the benefit sticks around for longer, then maybe a weekly or (ideally) fortnightly infusion will be possible.

It is now 10pm on Friday night. I will report back in a week and let you know what happens!

Very interesting! Do you know where your usual serum albumin runs? Mine is on the high end. I’m getting IV fluids and have been for 3 days now - the nausea I’ve had for weeks is GONE. I want to eat! I never feel like that anymore.

4 hours ago, MikeO said:

@rtoth256Sorry that your wife is having so many problems. My only advice i can give is to be careful as to self diagnosing and medicating (this can go bad) especially if one is flying blind. Like you i have one point was convinced that i had MCAS and was about to pull the trigger with the usual benadryl and H1/H2 meds. I am glad i did not. MCAS is a bit of a shoot to diagnose (more than just a simple one time blood test).

What has helped me with my health care providers is to write down on paper symptoms, concerns, what had worked and what has not, questions (like your beta-blocker concern). I have found that when the Dr sees the list i get a different tone with them as well.

As a note it has taken me two years to get where i am today. I did have to prioritize what was needed to worked on. In the past there were so many changes made we never knew what worked and what did not. so we have targeted one thing at a time and has helped me greatly.

Best of Luck

Great advice. I’m more than a decade in, and since I have gotten worse, with more illnesses joining in over the years, it’s gotten muddier. I’m on so many types of therapeutics and see a lot of different specialists. I do know what helps, and that I’d be much worse off without these tools.

One thing I did with my doctor list is to emphasize and prioritize things on the list, so they would know if it was just something I was mentioning in case it was a clue, OR something I really needed help with. I always try to go into an appt with 3 or fewer "big ticket" items - stuff I desperately needed solved, tests I needed ordered, etc.

15 hours ago, Pistol said:

Well, that is really fast! Usually - in my experience - IV fluids for POTS should be infused AT LEAST at 1 liter over 4 hours. Anything faster goes right through. I have received boluses ( very fast ) in ER and had minimal effect. When infused slowly I perk right up and the results last several days, if not longer ( for me they reset the ANS ). I now received infusions over a half a day twice a week and am better controlled then ever!

Yes - I’m getting my fluids now and each liter will be run over nine hours! It makes a huge difference for me. An hour or two for a liter would not help me much if at all.