gjensen

I reacted horribly to beta blockers. Twice to two different ones. Once was pretty scary. If you suspect, or your doctors suspect a mast cell activation problem, I would not recommend it.

My airway is especially reactive. I do not have visible skin reactions. My reactions are chest, throat, nose, and eyes etc. Only occasionally do I get visible flushing. I do have digestion problems to some food and drugs.

You are not the only one. A man's man can get this like any other.

Much that the women go through is what we go through, though everyone is different (of course). So what the women find that helps them apply to us etc. I would say the main difference is what they experience that we do not. Their cycles, pregnancy, etc. Then there might be some minor differences like how we might deal with it, the dynamics in the home, etc.

There is the occasional post that we have to skim over, and I do out of respect, but the rest will be applicable for both sexes.

Don't feel alone. You are not the only one.

I wish that I had something constructive to add Janet.

Having become familiar with you, I am certain that you will take a reasoned and sober approach to making a decision.

This will be on my mind.

Katie, I have read of several that had a lot of help from it combined with vitamin C.

Have any of you seen a decrease in what you react to with treatment. I am reacting to more and more food items. I will and then I will not. No rhyme and no reason. I only know that the list grows.

Also there does not have to be evidence of damage to have the pain.

SF biopsies are very accurate, but they are very specific concerning location. SFN can be "patchy". The biopsies do not rule it out, but they can certainly confirm it.

Sweat tests, and tests like QSART can be more revealing.

Personally, I think both should be done.

Not all dysautonomias include nerve damage, and some can be inflammatory in nature. A SF biopsy would show reduced density.

Mine was confirmed by both, but that is not the case for all of us. Some have no evidence of neuropathy at all.

EMG is for large fiber, and is a different conversation.

Keep in mind that I only know enough to get me in trouble.

Addie, what are you doing now to control your symptoms?

John, the way I understand beta blockers with NCS (someone correct me if I am wrong) is an attempt to calm the sympathetic response, and thus the over correction. Did your heart rate increase before the sudden drop, and if so, by how much?

Sometimes salt and water is not enough. Some doctors will add florinef and/or midodrine etc. Especially if a beta blocker is used, which obviously, lowers blood pressure.

If you are getting worse, and they are unable to help you get better, you may have to find a new doctor. Autonomic specialists are usually the most reliable.

Now understand, I am no doctor. Even if I knew the specifics in your case, I am not qualified to make any judgments. You, I am sure, know more than I. I have a different presentation.

I know what it feels like to doubt yourself, and get the run around. The right doctor can make a world of difference. They can be elusive.

I wish you well, and hopefully someone will be more helpful than myself.

We are close in age, and it is good to meet you.

I would not encourage or discourage the idea. They are work, but they are also a pleasure. I also do not know your situation, or how you are doing. Who the primary care giver is etc.

We have a couple dogs, and we all enjoy them as a family. Not to long ago, I conceded and allowed my son to bring home an abandoned kitten (sucker). I tell you, I have especially enjoyed this cat. It has become my cat. She does not leave my side. Very low maintenance etc. I had no idea, how much I would enjoy her.

It may be that a puppy will be a nice "pick me up" for you.

I have a few fenced acres that makes it easier for me, and family to help.

I used to be "anti" small dog, but more and more, I see their value.

If you decide for one, good luck.

I get the impression that the doctor is not comfortable with diagnosing it.

There is no question that for some it is a comorbid condition. I am not convinced that we understand why. The perspective seams to establish the position for both doctors and patients.

You may have to continue your search, but I would suggest and honest and frank conversation with the doctor that you have first.

Good luck.

I think it is a good question. More and more I am exploring ways to accomplish this. I do not see myself going as far as yoga. I have to hold on to some dignity. LOL.

So no, it is a good question. I have no tips, but I am interested in the subject.

I am sorry Bigsky. They can and do become family.

I have had no help with a diagnoses, and as a result, I have no experience with what helps. I intend to try Quercetin and vitamin C as a stabilizer.

Ironically, I have been allergic to all of the anti histamines that I have tried.

I have read a study where cromolyn helped with cardiac symptoms, so it does more than help with digestion problems. Isn't ketotifen an H1 blocker and a stabilizer?

I started reacting to Gatorade. The other ideas are helpful to me. I was getting ready to try a homemade mix.

The general recommendation is 2-4 liters per day, but we need to be sure that we do not dilute the electrolytes. Salty drinks are better.

I do well to get 2 in me. The irony is that I drink less when I feel at my worst, and drink more when I feel at my best. I need to be more disciplined about it. It does help, but I do not hold onto it long.

I cannot experience what you do experience. I am guessing by the way it sounds is it is what I call my POTS chest pain. I do think that for me, the root cause is the same though. I wish there was a better way to quantify it, and understand it certainly. I struggle with describing the differences.

I wish that I had an answer or suggestion that would be helpful. What helped me the most, I am no longer able to take. Nitro helped the severe and acute episodes, but does nothing to the day to day, all day pain. I am having two things happening, or the progression of a single thing, but I experience a change. A different pain and sensation as I relax to sleep, or upon waking up. Mostly, once I am asleep, I am ok.

In my worst spells, being supine is the worst, and I get relief after sitting up for a spell. Then it returns upon being supine again.

I have this all of the time, but I get flares that are especially bad.

Crazy stuff.

Is there any rhyme or reason to the chest pain that you guys get?

I get what I call POTS chest pain all of the time, and at any time. My severe episodes come at night, especially when I relax to sleep. Also when I wake up. Especially if I am woke up early or abruptly.

Occasionally these more severe spells occur with dizziness, shortness of breath, sweating etc.

I also get the arm and jaw pain, and occasionally in the back. All of my pain is centered directly over the heart. What I mean by centered, is that is where it is the most severe. On occasion it is sub sternal.

Also if I do too much. Then it is not in the doing, but after when I become supine.

Goodness. What an adventure. That is no shortage of challenges for such a short period of time. I am almost speechless. It does "sound" like your spirits are up, and that you have a good attitude about it all.

It looks like you are taking the right approach. One thing at a time to get it all back in order. I would feel like Humpty Dumpty (sp?).

I am happy to hear that you have a friend that is helpful. We should be thankful for those uncommon common graces.

It is too bad that we did not all live closer.

Keep your head up, be smart, and get it put back together. And get that nervous system out of sympathetic overdrive.

I am doing so so. Coming out of a flare (I hope), so I am encouraged at the moment. It is nice, and I always look forward to that bit of relief.

I agree that by the numbers it is borderline. Some do not want to call it POTS in juveniles without a 40bpm increase, and meeting a threshold of 120bpm. Given her symptoms, and that you see "bigger" numbers, I would be thankful that he is able to see past the numbers. Especially with a 60 degree tilt. An extra 10 degrees, may have been enough to show a larger increase. I have never seen results for a 60 degree tilt. I do not think. There is a 32bpm increase from her average to her 5 minute mark.

He may be looking at her blood pressure to. There is no significant drop, but he may think getting the pressure up, will help relieve some of her symptoms. Maybe he is shooting to get it up to 110/70 or 120/80? Maybe a low dose of florinef would help her feel a little better?

I noticed that her pulse pressure remains pretty steady, and only a mild drop in the end. That is good. Mine narrows significantly. Getting as narrow as 10.

I do not know. I am just "thinking out loud" and speculating. I would go with it as long as she tolerated the drug well, and it helped. I am certainly not making recommendations though. I would go through a similar thought process if it was one of my boys. If you feel more comfortable with increasing salt, fluids, and compression stockings give it a try. If it is not enough, she has a prescription for the florinef.

Many many young people go on to live healthy and happy lives.

That the ending is better than the beginning. It is what I look forward to, not what I realize now.

I have had runs of SVTs (and PSVTs), and they feel (to me) much different than sinus tachycardia. I have not had any in some time. Knock on wood.

The only way to confirm SVT, as you know, is to catch them. It sounds like a 30 day monitor is in order.

It could be runs of sinus tachycardia to.

Stress of any type can make matters worse, so try not to. The ups and downs are problematic for us, but it is easy to say. This illness has it's own ups and downs, and causes it's own anxiety. Then because of the illness, we can be more sensitive to the anxiety. It is a circle and a cycle of sorts.

Hopefully you will not have any more episodes, and you will get some answers soon. Just listen to the doctors, and you know what to do if encounter anymore concerning episodes.

I would be interested in hearing what you find out, and how it goes from here.

Have you guys had an EKG while in severe pain? Is there a pattern, time of day? If the pain occurs with exertion have you had an exercise stress test?

Thank you Soskis.

It looks like it is the last three of four. None before. It does not appear to be anything to be concerned with. My cardiologist has an appointment for me with the autonomic clinic @ Vanderbilt. He does not want to comment on the changes until then.

You are welcome to PM me anytime. We have some things in common.

This can be an isolating condition, so your feelings are not unusual. I have made a couple friends here, and that has been as helpful to me as any other thing.

I can relate with your concern for your children. That is probably the most difficult thing for me.