Sushi

19 hours ago, DysautonmiaMatt said:

Woke up with PVCs today

Are you sure it isn’t Afib? If you palpate your pulse in your wrist you can often tell—Afib is “irregularly irregular,” usually with an elevated heart rate.

A cooling vest for anytime you need to be out in the heat. You can even take a few flat-shaped freezer blocks and put them in the pockets of a close fitting garment. I keep a cooling vest in the freezer. 

4 hours ago, MikeO said:

Somewhere i did complain about ablating with my local cardiologists. They do suck. I think the ***** was about the folks with afib that were in cardio rehab talking about how the procedure did not work. 

The reason that the success rates are so poor is that most EPs doing ablations, shouldn't be! It demands extreme levels of skill and experience. Think about it--the EP is using a radio frequency "torch" to burn scars on the inside of your heart--and they are doing it using imaging only. Not only skill and experience are necessary but inborn hand-eye coordination. It is also very possible that the patient could come out worse than when they came in. It is also very common to have to go in later for a touch-up procedure as, though they will try to provoke the problem during the procedure in order to zap it, there may be hidden sources that don't respond to the provocation. Every cell in the heart has the ability to generate an electrical current, and that is the problem as, when areas other than the sinus node send out a signal, you get chaos.

The guy I am going to has done more than 10,000 ablations--that is why I have a long wait to get a date. People travel to him from all over the world. 

4 hours ago, MikeO said:

o are you a slow metabolizer

Yes, a poor metabolizer so medication can build up to toxic levels in the body. This happened recently with the antiarrythmic Flecainide and I developed complete heart block.

16 hours ago, DysautonmiaMatt said:

IF I have to go that route I would go up to Jax and find the best doc to do it and have family I can stay with there. I would never do it where I live now. Please let us know the outcome of your procedure. Hoping it all goes well for you.  What is the risk of ablation of the autonomic ganglia? 

The EP I am traveling to has a lot of experience with ablating the autonomic ganglia but says that some of the procedures that are being reported now in medical literature are too experimental and he would not do them without more research. I will have a zoom appointment with him soon to discuss what he thinks it is safe to do. And yes, a center like Mayo in Jacksonville is a much better option for ablation than what most of us have available locally, but still it would be important to fully research the EP before committing to it as there are only about 25 really elite level EP ablationists in the country. One thing to check is whether they are fellows of the Heart Rhythm Society.

@green I live in New Mexico and it is extremely hot and dry. I find that even 5 minutes in the heat seems to reset something metabolically that lasts for the whole day. If I do have to go out, I wear a cooling vest that I keep in the freezer.

Choline and citicoline: A friend of mine was the patient studied in the following article. For her, and apparently a sub-set of POTS patients, choline supplementation has been very beneficial. https://pubmed.ncbi.nlm.nih.gov/25466896/

2 hours ago, MikeO said:

Well you are correct that Mainstream Cardio likes Metoprolol/lisinopril cocktail or even atenolol. I have had problems with both

There is a fairly common genetic variance (CYP2D6) that makes Metoprolol contra-indicated. I have it and there are a number of common cardiac drugs that will give you problems if you have this genetic variance.

2 hours ago, DysautonmiaMatt said:

IF this ends up not being Lexapro and keep getting these I will push to get ablation or whatever its called to correct this for good.

I will be getting an ablation for Afib in the next couple of months and my electrophysiologist will also be ablating the autonomic ganglia in the heart with the goal of treating Dysautonomia. Ablations require enormous skill and the most important factor in the success of an ablation is who does it. I am a member of 2 Afib forums and the experienced patients there say that you don’t want to have an ablation with an Electrophysiologist who hasn’t done thousands of them. It is an extremely delicate procedure and operator skill is imperative, not only for a successful outcome but to avoid side effects and further problems afterward. 

1 hour ago, supertired said:

@Sushi @DADofPotsSon @GasconAlex Thank all for the responses - I'm curious - were you just "able to exercise", or did the exercise in the water actually make you better on land too?

Yes, better on land— more stamina.

8 hours ago, supertired said:

Any experience with this?

Years ago when I had daily access to an outdoor pool I was able to build up swimming from 1 minute to 20 minutes but I did it VERY slowly--like, though I went in the pool every day, I only added a minute a week to my swimming. We are all different but immersion in cool water does give you the advantage of compression. 

21 hours ago, MTRJ75 said:

I always fear asking doctors about exercise programs because I don't want to get into the whole deconditioning as a cause debate. 

I watched many presentations during the Dysautonomia International conference last week and was surprised that every doctor who spoke about exercise/movement felt that it was essential and would bring benefit, but… It was almost never administered correctly for a dysautonomia patient. The program that they were suggesting was incredibly mild and gentle and something that could be done by someone who is bedbound. They also suggested a website that had good information: https://longcovid.physio/rehabilitation 

Even the very experienced doctors whose names we all know said that movement/exercise, of the right type, was vital to prevent symptoms getting worse and to bring modest improvements. This inspired me to be more disciplined on the very gentle program I have been doing. Along with @MikeO, I successfully completed a cardiac rehab program that was specially tailored for me, as a dysautonomia patient, and this gave me confidence that the right exercise program could be helpful.

4 hours ago, MTRJ75 said:

I wonder if splashing cold water on my face or even going to the extreme of dumping it no my head might shock me out of something like this in the future. 

In the Afib community sticking your face in a bowl of cold water is a strategy to bring on a parasympathetic response, so it might work. 

2 hours ago, MTRJ75 said:

What the heck is this? And why am I triggered so hard by just a few second in 80+ degree weather with such long lasting effects? 

The temperature where I live has been running in the mid to high 90s, and while I am not sweating excessively, after a very short time outside, my OI becomes extreme and I am panting for breath with the slightest exertion. Yesterday I measured my oxygen saturation as soon as I got inside--at first it did not even register and then showed 88 and slowly increased to a normal range as my breathing became more normal. 

I was diagnosed by an autonomic specialist using the Beighton scale for hyper mobility. As far as I know, they don’t yet have a genetic test for hypermobile EDS. 

14 hours ago, mehaller said:

He was concerned that it would switch on a more severe parasympathetic response.

Interesting. So my understanding that SGB is thought to increase the parasympathetic response is correct? In which case, it seems that it would not be a suitable treatment for somebody who already has an a too intense parasympathetic response?

2 hours ago, mehaller said:

Went to Portland the other day for a Stellate Ganglion Block. Didn't happen.  Doc was very conservative and wanted to make sure that he didn't push my parasympathetic response into a permanent state - e.g. go backwards and make it worse - something he thought was a <.5% risk

Could you explain in more detail? Was he worried about increasing the parasympathetic response or perhaps increasing the sympathetic response? I have assumed that a Stellate Ganglion Block would not be helpful for me as I already have a hyper parasympathetic response, but maybe it my understanding is backward?

21 hours ago, mehaller said:

Everything backfired yesterday.  I took my second 2.5 a couple hours early - miserable.  Standing BP was 150/110.  I've never had my BP go that high, not even during healthy guy stress tests.  Headaches, more lightheaded than pre-meds.  My heart pounded all night - got two hours of sleep.  I'm wasted.  Oy

That is similar to my experience, (though I didn’t take my dose early) but once I had had that reaction I could never take it again without a BP spike. Understand that you feel wasted! I held the phone for six hours debating whether to call 911.

18 hours ago, Nin said:

is there anything else they can try for me? I've tried salt tablets, Fludrocortisone. They won't offer iv fluids in the UK. I feel like they're going to say we can't help anymore

Do you know, from testing, whether your sympathetic system is in overdrive, or your parasympathetic? It is most commonly the sympathetic but some, like me, are outliers and did well with a medication like strattera which increases norepinephrine in the synapses. A half an hour after each dose orthostatic intolerance was gone. But, I do not have POTS, rather neurally mediated hypotension. It might be a question to ask your doctors.

I had a different but very concerning experience with Midodrine. For the first two weeks on a low dose twice a day, it seemed to be working really well. Then I got a sudden blood pressure spike, and not realizing it was caused by Midodrine, took my second dose. The next few hours were scary. My autonomic specialist took me off it. Years later I dried it again using microdosing, but it still spiked my BP. It is a medication to take with careful monitoring.

33 minutes ago, MikeO said:

. Do i get a free shot at STEEL CUT OATS

InstantPot—5 minutes, 3 times water to oats! 👍

I had to make a change in meal types and scheduling due to a cardiac medication I need to take. I take it every 12 hours and it has to be taken with a meal that includes fat and protein. I experimented for a while with poor results and then decided to eat breakfast at night, which consists of steel cut oats with added butter and a hard boiled egg. Because of the 12 hour scheduling, this makes my last meal quite late but to my surprise, I am sleeping better and have better digestion when I go to bed. Before I was eating vegetables and protein for my evening meal and nighttime digestion was a problem.

9 hours ago, MikeO said:

My only suggestion for the exercise part is to only push as hard as you feel comfortable with and stop and rest if needed (moderate pain or discomfort).

This is key for me as well. I successfully completed a cardiac rehab program which was individually tailored for me as a pa with Dysautonomia. It was only twice a week and I rested for 5 minutes after each short session on a machine. They monitored my pulse and oxygen after each tiny segment. In 4 months, I was able to double my exercise capacity without any crashing. 
I now follow a similar program at home, though without machines other than a peddle machine. The rest of the exercises use resistance (no cardio other than the peddle machine—and not on the same days as the other exercises though). This does not crash me. After about two weeks, I add one more rep of each exercise. The total time each day is 10 - 15 minutes now, though I started with much less.
I have found “baseline training” to work for me. For a couple of weeks you take note of any activity that you do that causes unwelcome symptoms and then for your baseline, you eliminate all those activities. I know this may be daunting but it seems to help increase tolerance of physical activity. From there you being to add TINY amounts of physical activity but back off if you get symptoms. The. You add a tiny bit more activity each couple of weeks as long as you don’t get symptoms. Requires a lot of patience but I find it works. (I didn’t invent this—it is part of well-known recovery programs.)

1 hour ago, MikeO said:

Your Afib could be part of the fatigue and shortness of breath you go thru when walking

For me Afib is distinct—I can feel it the instant it starts and the instant it stops. For some, Afib is not very sympathetic but for me it is very uncomfortable thumping and pounding, out of any rhythm. When I am in Afib, I can’t walk or stand up at all, can’t sleep or do anything till it stops. I don’t recommend it!

1 minute ago, DysautonmiaMatt said:

 Cortisol does raise BP as well as Fludrocortisone - very potent started at 1 pill now down to 1/4 pill.  Perhaps you can discuss with your doctor.  Unless you have an adrenal condition you probably won't be scripted Cortef as once you start it they say its very hard to stop it. 

I did not tolerate Fludrocortisone, nor did it help! I was prescribed Cortef but after consulting with the doctor who prescribed it, decided that it is not a good drug for me due to having Afib. As far as “discuss it with my doctor,” I have not had a doctor who has any knowledge of dysautonomia for 13 years! 
 

As I’ve post on another thread, my next approach will be cardioneuralablation, as this has been shown to be an effective treatment for dysautonomia and I am already accepted for a cardiac ablation and hope my EP will add the neuro bit!

11 minutes ago, Pistol said:

I was told by my autonomic specialist that this is due to blood pooling from being upright, so is the shortness of breath - the blood does not circulate back up when we are upright

Thanks, blood pooling makes sense though, for me, the cement-legs and shortness of breath only happen when walking, not when simply standing.

There is something about the response to walking that I don’t understand. I have neurally mediated hypotension or orthostatic hypotension. My time before starting to faint depends totally on my general symptoms or fatigue that day. On a good day I can stand and chop vegetables for 20 minutes or so, while on a bad day, only a couple of minutes. I don’t ever get dizzy though, just start to faint. But even on a good day, I can only walk for about half a block before my legs start feeling like cement and getting short of breath. My legs aren’t weak though—I can easily cycle on a recumbent pedal machine, do strengthening leg exercises using resistance—but when I try to walk, some other factor seems to be involved. Ideas?

On 6/19/2022 at 12:59 PM, MikeO said:

Oh what is the word i am looking for pharmacogenomics testing. My Doc did say this is done for Cancer patients as well as SSRI folks. One of the reason being is to get the treatment right (genes do come into play). I know that the two predominant universities in wisconsin teach this stuff. and one has spun off a service that has offered it (pharmacogenomics testing)

For me it has been very important in prescribing medication as if you have certain mutations you will metabolize meditations differently than the norm – either requiring a higher dose or a lower dose or not able to tolerate the medication at all. It is an important safety issue and I think explains why many of us have difficulty tolerating different medications. 
@MikeOdo you know which university offers this testing?