RecipeForDisaster

It was a cardiologist in Boston who suggested I try it. I was hesitant. It’s strange in that it actually seems to make you more alert vs. tired like metoprolol does for me. But yes, there are so many different ones to try. I don’t know if all of them help with ectopics - I don’t think metoprolol did for me. I also had a lot of bigeminy and trigeminy. I seem to get more of those if my HR much under 60. Which would be if I took more of a beta blocker - that’s one thing that prevents me from going higher.

I can’t have non-selective ones due to my asthma, so I’ve only tried these two. Acebutolol doesn’t make me tired, and has more anti-arrhythmic properties. I was offered flecainide and an ablation, but I was cautious. 

1 hour ago, JennKay said:

Hi all,

I am continuing to struggle with PVCs. I have been taking 10mg propranolol morning and evening, which helps with my other symptoms (adrenaline surges, brain fog, fatigue, sleep) but does absolutely nothing for the PVCs. I am wearing a 2 week Holter which will finish in a few days and I am eager to see my % PVCs per day. Although, I suspect it will be a low total overall burden. Maybe I'll be wrong...

Anyway, in the last month the PVC "episodes," as I like to call them, happen in the morning when I wake, late evening right before bed, and sometimes randomly during day. Like right now... I will be in bigeminy, trigeminy, or will have a PVC every 5-10 beats for an hour, then things stop abruptly and they don't bother me for a few hours. 

Has anyone had a similar experience, where their PVCs typically cluster at certain times of the day? Did you ever figure out a cause and solution?

I can't find a trigger for the episodes, but the one thing that is common is that the episodes always start when I am NOT doing anything. When I'm up moving around they usually go away. 

Mine don’t seem to have a time of day pattern, but I had an average of about 1800 a day if I remember right. I’m on metoprolol at night and acebutolol during the day. The acebutolol seems to help quite a bit. IV fluids help, too. I use taurine to dampen the discomfort as well.

10 hours ago, Pistol said:

This has been true for me. I kept loosing weight ( due to auto-inflammation following COVID and unrelated Sepsis ) and icecream saved me. I now have to stop myself from eating it because otherside I would be a walking barrel. 

Ice cream is a major favorite of mine, too. I’ve been making homemade brownies to serve under ice cream, topped with hot fudge. When we’re out, we chase super special ice cream.

Lyrica helped my TN quite a bit, along with carbamazepine. But I don’t think it has helped my neuropathy (unless the TN is from that). My feet burn badly and I always have buzzing/vibrating in my legs. 
 

Lyrica is why I’m not underweight anymore, although since I’ve been doing worse, I am losing again. It caused the doctors to stop worrying about my weight loss, sigh… it put about 20% on me on its own. It doesn’t matter if I don’t eat!

Ugh, yeah, I did not enjoy it. The copay was $150, too. I was told that I could try IVIG if it was positive for SFN. I was also told that Lyrica should help it, but it hasn’t for me. I take supplements that should help, too. I don’t have disability, though. 
 

It turns out that they did not actually order it or get a denial before I was told all this. I guess the secretary misspoke, which is kind of maddening. So far, I have 2 other doctors who have said they’ll help me with insurance qualification if needed. They really want me to try it, because there is not much else out there that might help! The infusion pharmacy is motivated to help as well. Fingers crossed… 

1 hour ago, MikeO said:

I feel so bad for you, I know you really are looking for some relief. The fact that you were given a bit of to grab onto just to have the carpet pulled out from under you just adds salt to the wound. I had a TTT canceled a bit back due to a other health issue. I was really looking forward to possibly getting a solid diagnoses and even drove 5hrs round trip to get a EKG because my local provider fudged up the one a few weeks prior so i get the feeling.

All i can say is stick with it. I am sure you are by now SUPER motivated!

Like I always tell my doctors, I might be able to deal with this if I’d stop getting worse. My quality of life isn’t something most anyone would put up with, and it just keeps getting lower. I need the basics - sleep, walking, eating. I really don’t have those now.

Having stuff canceled after you’re all ready for it is horrible.

I won’t give up on this. There is very little else I can hold onto. NIH undiagnosed diseases program is about it, and that is not super likely.

36 minutes ago, MTRJ75 said:

They probably want proof that an autoimmune process is causing the SFN. 

I mean… IGG vs. FGFR3… ANA positive in 2 ways… other gamma globulin abnormalities… I sure hope they are putting that in their documentation!

I finally got through to the neurologist's office, and they didn’t even submit the PA yet! Seriously? Thanks for scaring me so much. The secretary did not have to read me that cryptic message!

39 minutes ago, MikeO said:

My procedure request ended up on some directors desk. took three weeks to finally get the approval. I am thankful that UW is good at what they do.

I will fight if I have a choice. I happen to be getting much worse overall in the last week or so, so I’m highly motivated. 

2 minutes ago, MikeO said:

Well i went thru this kinda when we went to get my angiogram approved. First round of diagnoses and documentation was not enough so my Dr office ended having to send in more supporting documentation it did finally go thru.

I would call your insurance company and inquire as to why the denial in there words. You can also appeal the denial and see where you end up.

Be persistent! Squeaky wheel usually gets the grease. 

I’ve been through it with other things, meds and tests. The communication breakdown is a lot of the problem here. I never heard from the ordering physician or his staff. I really don’t think there was a denial.

7 minutes ago, Pistol said:

Have you tried to do an appeal? The problem with most of these rare diseases is that there are no set protocols and no FDA approved meds. Sometimes the docs have to get tricky to get a med approved. I would talk to your physician and discuss this. sometimes my docs can get around the insurance's limits by sending a detailed explanation. In the past - for me - this has led to approval despite an initial denial. Also - sometimes if the one doc can't get something approved another specialist may be able to. Keep going - an inital NO does not mean it is the end of the road! I have called my insurance before and fought until my teeth fell out and eventually I won. If your caseworker does not help - ask for her supervisor! I have taken it all the way to the medical director of an insurance and got approved. PM me if you need specifics!

I’m honestly not sure they even tried to get it approved. It sounded, third hand, like they just gave up before they started. I am still waiting to talk to someone. I wrote to my big city neurologist as well, in case he is better at this. I would definitely appeal it. I would be happy to get those specifics!

Good idea on the supervisor. I tried that before with her and they were like "what do you want us to do?". 

After the doctor told me he was angling for IVIG, and talked me into the biopsies, he said he wanted to order it once we got the positive results back. It’s been about 10 days, and I finally found out that they have a message there that "that’s not enough of a diagnosis to get it covered", which is a shock to me. I would never have done the biopsy and I had a glimmer of hope about this. I keep getting worse and am barely able to push through everything - not sleeping, too nauseated to eat, losing "time" when I stand even slowly (plus hearing and sight), just feeling horrible, plus the neuropathy which is constantly worsening. The SFN was probably my only qualifying diagnosis, although I do have HYCH, positive ANAs in 2 ways, immunofluorescence, abnormal subclasses and beta globulin, etc. I wanted this to help with my suspected antibodies to alpha, and autoimmunity, not so much the neuropathy.

My insurance is pretty easy to deal with and covers most anything. I don’t know how hard they tried, if at all, but my new nurse case manager is not exactly a go-getter and hasn’t done anything to help, despite my pleas. I don’t know what to do here - any advice?

30 minutes ago, MikeO said:

Make a note not to get near me while i am working under the Camaro. I usually sound like a Cat coughing up a fur ball. 

Haha! I love my cats, but they seem to challenge me on purpose. 

I’ve been sick for over a decade. I’m not totally diagnosed or treated yet. Most tests and specialist referrals are scheduled a year out (this has been since the beginning, well before COVID) and it’s in Boston, so I’m not sure moving would help you that much. It stinks, but there are not too many autonomic labs or specialists. 
 

Cats have made me pass out, too. 

HYCH is hypocarbic Cerebral Hypoperfusion, which is diagnosed on tilt table test. I had a severe decrease in my brain circulation when tilted, but I didn’t come up positive for any of the "normal" TTT diagnoses. 
 

The trigeminal neuralgia is managed on medication now. For five months, I didn’t know how I would get through life. I have mostly type II which is continuous pain. I do get face shocks, too. I am not eligible for the most successful type of surgery.

My BP has been documented at 72/40 and I’m sure it’s been lower when I’ve collapsed or passed out. I use metoprolol at bedtime only, and I would not be able to sleep without it due to the pounding. I take acebutolol in the morning, and it does not seem to affect my BP. Both are pretty low doses, though. A-fib stinks!

I just saw my sleep specialist yesterday. She does not know what to do with me. She does think my broken sleep is a big problem. It makes a huge difference in how I feel and function. I often sleep just a couple of broken hours a night. It’s awful. I have taken magnesium for many years.

My doctors are trying to send me to the NIH undiagnosed diseases program, but they only accept 10% of patients, and traveling is next to impossible for me. Mayo didn’t want me!

I did the EMG a long time ago. Luckily my current neurologist said I just needed the biopsy (which I didn’t like, either). My swallowing is not great, either. I also tested negative for all of those specific diagnoses like lupus, RA, paraneoplastic (although I do have positive immunofluorescence).

They should find MSA quickly if it’s present. Good luck! 

2 hours ago, MikeO said:

ty. Best to for you as well!

Thanks. No word on starting yet, but it’s only been since Friday!

3 hours ago, Pistol said:

 

I use a husband on a riding mower for 11 acres. 

I could do this, but all of my flowers, vegetables, belongings, AND the mower would all be ruined. LOL. It’s worth it to me!

10 hours ago, MikeO said:

Thank You! for sharing what you feel. I did get the nerve up to test boog my left leg today. I cut the grass with the self propelled push mower (brain fog kicked in this morning and could not find my car keys to pull the car out of the garage to get the rider out, Yo and behold they were sitting right where i usually leave them ) did ok 1/4 of the lawn at a time then rest but after the pain kicked in again (()).

I did make my broth concoction and it seems to help with the discomfort or just lets me think it does. I have no idea how i got into my predicament, maybe caught it from a public toilet seat "Haha" sure @Pistolwill correct me on that  but i do share your pain.

I see my Vascular Dr in 2 months he did allude to some nerve issues possibly also keeping my faint team in the loop as i have made some progress with stabilizing my bp's. 

If i find anything out i will update you!

I use a non-self propelled push mower. It is time to use it! It takes me 4 miles of walking to get it done. I’m having a rough few days, or getting worse, so I’ve been putting it off.

I drink a lot of broth and make a cold hydration solution for hot weather. It doesn’t help me all that much, but I like it.

Vascular is one specialist I don’t have. I think there are 4 neurologists and 5 cardiologists, though. All with different sub specialties.

Is that a Frank Zappa reference? Haha! Good luck!

11 hours ago, MikeO said:

So do you get any pain in your butt cheeks or hip muscles at all? Like you i do get the buzzing/vibrating sensations and is really noticeable while lying down. I also get the burning feeling on the top of my thighs. Some of the discomfort is mostly in my left leg, i get the pain at rest in my left lateral calf and my foot + my left cheek.

I did recently have my left femoral artery opened up (it was 80% blocked) but i can't blame everything on that so i really think i have some kind of nerve issue going on.   

Nope, it’s not that high yet, maybe just a little buzzing there. My upper calves, yes. The worst is the lowest, starting on the soles of my feet and heels, my fingers and hands… 

My legs fall asleep pretty much instantly if I sit in a regular chair. It’s super bad at the moment! As in, I can’t stand or walk.

My circulation is bad, too. Not blockages, but not good. 

3 hours ago, ANN944 said:

Hi Recipe for Disaster (or anyone else that would like to comment)

My vibrating/buzzing started last June 2021.  Neuro’s clinical suspicion is SFN (Small Fiber Neuropathy AND Dysautonomia).  Yikes, what a double nasty dx.  May I ask you when your leg vibrating started?  Was it your first symptom?  And then, may I ask how soon after the leg buzzing into your symptoms did the pain start?  I have had bits of numb/tingling in my hand, toes…and sometimes a sharp pain where I feel I stepped on glass shards, but nothing is in my sock or on the carpet.  Is your pain constant?  Or just at night.  Also I noticed you said the supplements worked at first…may I ask for how long approximately?  I am now taking ALA and Acetyl L-Cartnitine and Bentofamadine (B1).  

Right now I have horrible back of neck/occipital pain/tingling and scalp tingling.  But there are like 1,000 other symptoms that come and go as well.  I am definitely in a flare that was triggered by extreme stress.  When dysautonomia subsides; it seems the SFN kicks up.  My loss of sensation (skin sensory) is diffuse—it can be anyway (torso, arms, legs, feet, abdomen).  When I sleep, my HR goes up to 91+ bpm, when normally I am around 70.  I have low BP and pooling in lower extremities; I’m probably close to POTS starting to happen as well.    No syncope but the head tingling is scaring me…

Sorry for all these questions, but if you wouldn’t answering, I would sure appreciate it.  My Best,  ANN

Oh, no problem. All of my issues came on so slowly and insidiously that I can’t even tell you what was first. I had numbness and tingling early on, but that’s when we found my B12 was super low. Those symptoms never got much better. Then I realized I wanted to lay down instead of hiking, and I was passing out. That kept getting worse, and eventually I would lose my vision whenever I stood. I now lose my hearing many times when I stand, too. 
 

Most people I talk to say they’ve never heard of the vibrating/buzzing. That’s the best way I can describe it when it’s not super painful. I would say that it was about 5 years before I started getting bad pain in my feet every night. My feet burn all the time, but it’s not that painful except when I’m trying to sleep(it can be very, very painful and hot, mostly my heels). It’s been harder and harder to avoid that pain… I used to be able to wear thick socks, then put them on pillows, and now I have to keep my feet touching nothing at all. The supplements worked for a year or two, and I think they still help. I just got worse.
 

I tried the other B vitamins, partly because I developed trigeminal neuralgia. I definitely have some kind of autonomic dysfunction, and I do have documented HYCH, but not any other specific kind. I have autoimmunity but again, no specific kind. I do not have POTS, but definitely low BP and blood pooling.

I also have a bad spine, and bone spurs, bulging discs, etc. So some of this could have been radiculopathy, but it’s very even on both sides. My HR also goes up and is generally too fast, but that’s controlled with 2 different beta blockers. I have lots of PVCs and bigeminy. Even when I don’t, and my HR is low enough, I have awful pounding, violently hard with every beat. Beta blockers have also helped that. My sleep is still awful for so many reasons.

One thing that’s super annoying about the neuropathy is the random itching all over - it keeps me up at night. I hope this helps and am always happy to answer questions! I feel like my story is really disorganized and tough to follow, but I’m so complicated and can’t even recall everything that’s bothering me at the moment. I just feel awful.

4 hours ago, MikeO said:

@RecipeForDisasterI know some of what we go thru can and is scary. I did read up on IVIG treatments and it has it's place. I know it can be costly and inconvenient but have faith it does help. 

I’m definitely ready to try just about anything. I keep getting worse and I was already doing really badly!

10 hours ago, MikeO said:

Thank You. You have just described what i fumbled at telling my health care team as to what i feel it is the same as you described. I do feel a bit more empowered when i go back in in 2 months.

I hope you get some relief from your diagnosis. 

As with everything else, it’s very hard to put into words. I feel like my legs are against a vibrating/buzzing couch right now.

I hope the damage is halted and I have no idea how many of my problems relate to this. I have so much wrong with me, and this doesn’t explain all of it... but my autoimmunity may have caused it and other stuff. 

I have what feels like buzzing/vibrating in my legs and feet all the time, and then a hot pain that is very bad in my heels at night. I can’t have them touch anything - they are suspended on pillows in midair. But my hands are also painfully numb most of the time. Nothing really helps, although the supplements did for a while.

Biopsy proven small fiber neuropathy. The neurologist is working towards IVIG… I already take Lyrica(that’s mostly for my trigeminal neuralgia), alpha lipoic acid, and acetyl L carnitine. Does this diagnosis changed anyone else's management? I’m sure it’s behind my autonomic neuropathy as well as my very uncomfortable parasthesias, burning pain, etc. I’m equal parts relieved that they found something (and that I didn’t have the biopsy for nothing, because it hurt), and scared that we don’t know why it’s there… plus the IVIG itself scares me a bit.

12 hours ago, MikeO said:

That was me Oh wait what would i be doing in a girls bathroom Haha. Cool you ran into a fellow potsie. Too bad you did not get the chance to chat.

Haha! When I saw it was you posting, I was like "um it really didn’t look like you". I was SO drawn to her! I really wish I had been alone. I ordered a nice anatomical heart sticker for myself, because I would not advertise my diagnoses, but I can get away with that. Hers were all cutesy sayings about POTS and salt and stuff.