RecipeForDisaster

47 minutes ago, Pistol said:

@RecipeForDisaster that sounds horrible! I hope these side effects are only temporary and that the IVIG will help you! Hugs, hang in there!

I’m telling myself it’s definitely worth it and I am going to get better. I believe in placebo if nothing else! I’ll give it a year to make sure it does help. It wasn’t THAT bad, although this morning has been rough, I just don’t want anything to get worse. I even kept working all day yesterday.

Update: I got my first two doses. It was odd. I immediately got lip numbness, heat and burning in my throat, a twitchy feeling in my throat when taking a faster breath, pressure in my lower front teeth, allodynia(a feeling of knives in my feet, for an hour, from dripping a little room temp water on them!), and a drop in BP. I took Benadryl and Tylenol first, and got a total of 5L IV fluids over two days! Both days were the same, including the 20 point BP drop. I got fever and chills later, and my IV site was itching and burning at the end of the infusion both days. Most of this went away once I was back on plain fluids again. Then I woke at 3am with a bad headache, neck and back pain. It hurts to move my eyes or anything, and the pain moves around my head depending on position. I’ll tell the doctor all of this on Monday… it’s already over 6 hours just for the IVIG, and that’s 2 days in a row, so I don’t want to stop or slow it. I would be okay with more premeds or a change in brand. 
 

I had 2 different nurses, and both were kind of blasé. The second one really was inattentive. I had no hives or rash, but they never listened to my lungs. I think it’s all worth it, as long as it helps and is safe - I can deal with a lot of discomfort. I am half fascinated and puzzled.

On 7/8/2022 at 4:20 PM, MikeO said:

I do have my eye on your progress with the IVIG hoping for the best. My PT today ruled out a pinched nerve causing the pain in my leg. we did talk about a neurologist getting involved not what i wanted to hear. MRI is next.

Ugh! Then I can foresee EMGs and/or skin biopsies. Good luck!

10 hours ago, MikeO said:

I know the feeling. I am like a kid pacing around waiting for his toy to come in the mail after sending in the cereal box top and quarter.

Lets us know how it goes. Have my fingers crossed for you!

Yeah, it’s been so many years, and I keep getting worse, with little other option. Thanks, I will keep you guys posted!

9 hours ago, MikeO said:

Thanks for your analogy again. I did go into PT today and she knew what i was talking about when my leg feels like it is buzzing. She is sure it is a nerve for now.

I do have to ask how is you IVIG treatment going? 

I start in a week! What a slow process! 

People usually look at me blankly when I say it’s a buzzing feeling. Or vibrating. I’m told it could help in a few days, a week, a year, or never! Yay! 

1 hour ago, DysautonmiaMatt said:

I use an Intensity Micro Combo Tens/Microcurrent unit with ear clips on left ear.  Cost under $100 which my chiro who is also a functional neurologist told me to get as I started treatments with him. I find it helpful and use it regularly.  I only use the microcurrent function.

https://www.tenspros.com/intensity-micro-combo-tens-microcurrent-di9698.html

That looks a lot fancier than mine!

I made my own using a tutorial I found online, ear clips I bought, and my old CMS3000 TENS device. It was not difficult. When I was doing better, I found it helpful to slow my HR. I think it’s worth a try!

52 minutes ago, Pistol said:

@RecipeForDisaster - I am happy and hopeful for you. Best wishes - and thank you for sharing the good news!

Thanks guys! I’m cautiously optimistic. I found a favorable sounding study about this. It’ll be 55gm each day for 2 consecutive days. They’re doing the first dose at my house!

I am so relieved - I was approved. It’s going to be over 2 days every 6 weeks. 

3 hours ago, Sushi said:

A bit OT, but for any of you who have had a holter monitor recently (epatch) do they have them with hypoallergenic stickers? I am about to get one as the EP who is doing my ablation wants a more detailed picture of my arrhythmias than my pacemaker gives him. When I have worn them before they really itched!

BodyGuardian had hypoallergenic stickers, but they were still pretty allergenic if you ask me. They also sent regular electrodes so I could rest my skin and put them in another spot. It was a long 30 days both times - raised, red, itchy rash all the time.

8 hours ago, MikeO said:

All of my events were Sinus tachycardia as well but cardiology is not really concerned about that unless you are consistently hitting 160 or better which will never happen as i am beta blocked. I did give them a choice to keep this thing in but apparently someone else did not think there was any value in it.

The anxiety comment really put me off. I need to turn my Zen on. Water under the bridge.  

Oh yes, I’m on 2 different beta blockers, and the same thing happens - “oh, you stayed under 170”. Um yeah. That’s drugs talking.
 

It can be easier said than done. Inaccurate info drives me nuts. 

1 hour ago, Pistol said:

@MikeO  I had several halter monitors and an ILR ( for 3 years ). They all showed the same: Sinus tachycardia before and during events. Initially they were hoping to catch a sudden drop in HR so I could get a pacemaker, and I was dissappointed that nothing came of it. But my autonomic specialist explained to me that finding "nothing abnormal" is also a clue - meaning the tachycardia during symptomatic events is proof for dysautonomia. That in itself is a result. Now that we know that no abnormal rhythms are causing my symptoms we can concentrate on treating the cause - the ANS. 

Oh yes, they really wanted me to pass out with monitoring so they could see that it was due to arrhythmia. I knew it wasn’t, partly because it was never sudden. Yep, sinus tachycardia every time. I’ve been an EMT since 1998 - I know rhythms. My heart rate goes up because my BP is down.

I've had my doctors notes say I’ve never passed out (um it’s like every other week and I would never say anything like that) and even, once, that I use adderall recreationally. If you count "prescribed with a prior authorization and taken due to very low BP and lack of sleep" recreationally, then sure. I was highly upset about that one. I take it like once a month anyway, because it’s hard to get the prior authorization.

5 minutes ago, MikeO said:

Well had the loop recorder taken out today. Was a bit of a tug to get it out but went well. Still i am not happy with the lack of acknowledgment with the elevated heart rates causing issues. there was also a note about anxiety as the reason to have this thing removed which i totally reject. bottom line it did not prove its worth. 

I hate when people say stuff like that. I’m glad I didn’t get one, although I was encouraged to at times… I mean, I showed tons of PVCs, V-tach, and plenty of tachycardia on my 30 day monitors, so I think that’s enough.

11 hours ago, MikeO said:

I do have the dysautonomia written on my chart from my PCP he does get it but NOT. I also at my last visit was tagged with neurogenic lumbar pain (what the fuge is that) Thanks to you i have figured out the neuropathy or nerve pain. It has helped.

Yes i agree i do have useless diagnoses as well. even my last two TTT tests were a cluster fudge with no clear diagnosis and a lot of passing the buck.

Have you made any progress with IVIG treatment?    

Best

Mike

Yeah, and these labels change a little at each visit. I’m glad I could help a bit!

I definitely have something other than dysautonomia, HYCH, and SFN going on. Autoimmune problems, heart stuff, other things that don’t fit any of those. But if I don’t get into the NIH undiagnosed program, I don’t think anyone is going to figure those out at this point. I’m just hoping the IVIG accidentally fixes some of them. I have also had 2 TTTs and they were not too helpful - one inconclusive, one with the HYCH (I actually think this autonomic neurologist invented that diagnosis). My QSART was fine, which is weird with not sweating normally and having what I now see is severe SFN on biopsy.
 

It’s a very slow process. I think they just submitted the IVIG orders and authorization request last week! Then it might be denied and we’d have to go into appeals. I think I had the biopsy ordered in December. But heck, I’ve been sick for maybe 12 years, what’s another one…

1 hour ago, MikeO said:

Well this just shoot. To be honest not sure how one would get a dysautonomia diagnosis. I could see POTS or orthostatic hypotension or a subtype like neurogenic orthostatic hypotension but the term dysautonomia is just a blanket term. May want to look for a new specialist or demand a quicker turnaround for a re-test.  

I have that. They don’t really know what kind, although I do have HYCH (no one has ever heard of it). Mostly I have the label "idiopathic dysautomomia" and stuff like that. Autonomic neuropathy, and other fairly useless "diagnoses".

16 hours ago, Sushi said:

Hmmm, are you happy with this EP? Seems like they should be concerned with anything that is causing a negative impact on your life. Finding a good EP can be hard. 

I think so - I feel awful all the time, and the PVCs and other stuff only affect me a little more. If I felt good, and was managed well otherwise, I might chase this stuff. I was just surprised that they didn’t want to look into WHY a "healthy" 41 year old was having VT. I have proven that my syncope does not relate to these - I’m usually just in sinus tach. I wonder if my hypotension and other problems cause the ventricular irritability. 
 

They did offer more aggressive treatment… but my 2 different beta blockers, magnesium, and taurine are okay for now. Most of the time.

14 hours ago, Sushi said:

Flecainide and Propofanone are both the same class of antiarrhythmics and have black box warnings (with reason: I just had complete heart block from Flecainide). Beta blockers do not have these warnings. Also, from the cardiac forums I follow, some find that Magnesium Taurate helps a lot with ectopics.

Yeah, I do hesitate with the black box warnings. I take magnesium taurate as well as more taurine. I have tried glycinate and other chelates and salts. I don’t think magnesium helped me.

I had a run of V-tach on my last monitor as well as increasing PVCs, bigeminy, etc. They weren’t even worried about that! Acebutolol did help with the PVCs, or at least the feeling. 

12 hours ago, ramakentesh said:

Yeah that sounds very similar to what i experience.

They encourage me to try more Lyrica, but I prefer taking 75mg at bedtime. It’s only when I’m trying to sleep that it’s a huge problem. I tried 100mg and no help. Allergy meds, supplements, you name it, nothing helps it - and if topical lidocaine helped, I'd have to bathe in it. It’s literally my whole body including in my ears.

4 hours ago, ramakentesh said:

Interestingly after ten years of having what i would describe loosely as 'zombie POTS' where i just felt terrible OI and dizziness, fatigue etc which responded quite well to midodrine and florinef, last year my POTS did a complete 180 degrees and hit me with the most intense hyperadrenergia ive ever experienced in 18 years of POTS on and off. It went on for 6 and then 15 days of solid daily BPs of 180/110 and HRs of 140 and it was utterly horrendous. 

I was climbing the walls and actually felt like I was mentally losing it from the constant feeling of panic. And I have absolutely no idea why it went that way after over a decade of a fairly stable presentation with relapses and remissions. 

Pretty much threw out all of the past research I had read about the causes of POTS - made me start to think it may be more of a spectrum or something; or perhaps sometimes it just swings the other way for what ever reason. 

So now Im on clonidine and its been very helpful for me although it promotes OI but I kind of prefer dizziness to feeling so wired I cannot sleep and startle all day at birds etc.

So interesting. I have features of both, symptom wise. I am easily startled and it can be dramatic - but I’m calm and drowsy. No one will let me try clonidine, partly due to my low BP - but I can’t sleep. I’m really hoping this is all due to some antibody or autoimmunity and IVIG will help (hurry up!). 

4 hours ago, ramakentesh said:

You noticed any itching with the SFN? That and not being able to tell cold from hot on my feet were the reasons I got that biopsy done. I was positive but years later i was negative and POTS was the same so work that out

It’s so bad, one of the worst features of my SFN! It keeps getting worse and is like whack a mole. I scratch one place, it’s relieved, then somewhere else totally random starts itching, and this repeats… nothing helps the itching, other than finally scratching the itchy part. If I don’t, it keeps getting worse and worse.

I was surprised that I tested as unable to detect change in temperature in my feet and legs. I had a negative/inconclusive biopsy years ago. I think part of it may be technique.

On 6/3/2022 at 7:53 AM, JennKay said:

@CallieAndToby -- please keep us updated on what you find out about the low E, N and E + N levels. I am like you, my metanephrines were low or undetectable as was my 24 hr catecholamine urine analysis. Yet, I struggle with adrenaline surges, mainly b/w 2am - 4am almost daily. I started taking propranolol before bed and this has helped, but still hasn't fully eliminated the issue. I always wondered why my N and E levels were low with my maim symptoms - adrenaline surges and ectopics. 

Me too. I was sure those levels would be through the roof with how I feel. Nope!

On 6/2/2022 at 7:57 PM, DysautonmiaMatt said:

It seems to calm me down and have fallen a sleep during it. Did you use a unit with Ear clips? I use a very low power setting so it is very gentle and use on left ear. Right ear has vegus branch that goes to heart so was told not to use that ear for safety. I try to use it for a couple of hours while watching TV but have not since I started Zoloft Monday which has been messing me up majorly with horrible anxiety and brain fog so far but lowering my BP and HR so much I have cut back on beta blocker.  Atlas adjustments have been most helpful up until now that I moved. I try to find things that are natural non-drug as possible to treat this condition.  For example before bed I take Gaba Calm Mind lozenges right when I get into bed. Have to take gabapentin and sometimes a bit of Xanax for my insomnia but the lozenges help me fall asleep fast. Gabapentin seems to help keep me asleep longer and somehow calms be the next day when not flared up.

Yes, I have an ear clip on my left ear. I’m already pretty calm, but my heart is not, without beta blockers. I used to use exclusively non-drug solutions, including for my other issues, but I’ve gotten so much worse that I can’t do without lots of drugs. I don’t even do okay ON the drugs(and sleep, ugh, that’s a huge problem). It’s a necessary evil, unfortunately. I am supposed to start IVIG, and I’m praying that will be my solution. I used many supplements and herbs before I got so much worse.

6 minutes ago, DysautonmiaMatt said:

Sorry to hear your frustrations and suffering. One good thing that came out of Covid is more tele-health options which are great for people like us especially when flared up.  Svetlana Blitshteyn, MD is in NY but offers tele-health per her website. I am considering contacting her to setup an appointment. 

One thing that was helping me hugely but not with my current flare up is upper cervical chiropractic. These are specialized chiros that deal with Atlas alignment.  I recently moved and regret the new local chiro is not as good as the one I had in South FL.  After they did x-rays and exam my atlas was way out of alignment. I felt much better after the 1st adjustment. Dr Jonathan Chung in Royal Palm Beach FL who also is a functional neurologist was who I saw for 3 years. He told me most patients that faint no longer faint after getting atlas aligned. Down side it can take many adjustments until they hold for longer periods of time. He has treated lots of patients with dysautonomia/POTS.  Google "upper cervical spine chiropractor" to find one near you or contact Dr Chung or Dr Julie Hunt in Clearwater FL to see if they an recommend one near you.  IF your atlas is not aligned and you are adjusted you could feel better soon after.   Nice thing it does not involve drugs and is painless.

The other thing that Dr Chung had me do is vegus nerve stimulation using a micro-current device with ear clips.

Do you find the vagal nerve stimulation helpful? I thought it was lowering my HR and palpitations, but then I got worse and it didn’t keep up. Is it helpful for that or other stuff for you?

I start to lose my hearing when I’m going to pass out, or when I change position these days!

10 hours ago, JennKay said:

@RecipeForDisaster -- It looks like acebutolol can stimulate as well as block the beta receptor, so this is probably why it causes more alterness than other betas?

And, that is definitely what is happening to me, when my HR drops to about 60ish, this is when the PVCs go bonkers. That is why I thought they were happening more at night before bed, when I am trying to relax and unwind for the day. These episodes also started happening more as I was gaining a bit more energy back and was trying to walk a little farther each day, per the suggestion and encouragement of my EP. The PVC episodes aren't happening when I walk, but a few hours after walking. It doesn't make sense to me! 

Yes, that makes sense. So, I take one in the morning and one at night.
 

We are so hard to figure out. During my exercise stress test, the PVCs decreased a lot. When they first hooked me up, I had so many that they immediately referred me to an EP (I had a few cardiologists but not one of those). 

I have more PVCs after I eat, and I’m careful not to lower my HR too much. I like it between 60-70 or so if I can.