New to this Board

[spirlhelix]

Hi, All!

I was referred to this board from another site for autonomic dysfunction.

I am impressed that your community is very supportive and caring.

I have some odd symptoms, but have not yet found one category that seems to cover them all. I hope someone can steer me in a direction so I can figure out where to begin.

I have been diagnosed with:

Mononucleosis (way back as a teenager--now I'm 48)

Chronic Hepatitis B (now recovered, but still dealing with complications)

Polyarteritis Nodosa (thank God I recovered when the Hep B went away)

Glomerulonephritis--still have a touch of this

Malignant Hypertension

Primary Aldosteronism

Congestive Heart Failure (better now that my aldosteronism is being treated)

And a few other things.

My problems at the moment center on my blood pressure.

My cardiologist just ordered a 24-hour blood pressure test, and it seems my blood pressures are "exteremely variable", according to the nurse who read me the results. Not to sound terribly ungrateful, but I already knew this. So, for example, when I saw the cardiologist last Monday, my blood pressure was 116/86 in the morning, and 204/117 three hours later in her office.

My cardiologist's concern seems to be that (even though I have made good progress in the past year) that my heart will get worse if this lability keeps up.

Now this degree of variation in my blood pressure does not really bother me symptomatically, because for the moment my blacking-out spells are under control. But I am fairly sure that if she tries to mess with my medication to reduce the blood pressure, I will go back to having those symptoms regularly. Apart from that, I have a strong objection to beta blockers, because they make me suicidal within a short time of taking them--and I have a feeling she wants to push me to get on them.

Here are some of my odd symptoms:

Deep red (nearly purple!) facial flushing, along with a feeling of anger or frustration. This is not frequent, but it freaks people out when they see it. It feels like I'm on a track where I can recognize I'm overreacting, but I am not able to calm myself. It does not feel like anxiety.

Intermittent lowgrade fever, of unknown origin

Labile blood pressure

Heart rate frequently (but not always) 100 or over.

Dizziness and blacking out after standing up

Alternating bouts of constipation/diarrhea

Bladder woes

Hands frequently tingle while I'm asleep, which tends to wake me up.

Can anyone suggest any form of autonomic dysfunction which corresponds to what I'm experiencing? I'd like to read up, but so many of these forms of AD have conflicting symptoms--and so do I!

Clues, anyone? Where to start?

Warmly,

Pam

[corina]

Hi Pam,

just wanted to welcome you. You're absolutely right, people are very supportive and caring here. Glad you found ithe forum. I would recommend you to try and get a TTT, which might give you a diagnoses to start with. In my case, my cardio referred me to a neurologist who did the TTT. So, welcome and good luck in figuring things out!

Corina

[MomtoGiuliana]

Welcome Pam.

Have you been evaluated by an electrophysiologist?

I second Corina's vote--it sounds that a tilt table test is in order.

Good luck and hope you get a diagnosis and see lots of improvement.

Katherine

[blackwolf]

welcome pam,

i guess i don't have to repeat what the others have already said. if you do have dysautonomia, don't be suprised to get more than one diagnosis. many people have more than one. ex POTS and NCS. and several of us also have chronic fatigue syndrom and/or fibromyalgia.

best of luck, blackwolf

[Eillyre]

Hi Pam! Welcome to the family!

I'm still rather new to the dysautonomia scene, so I'm afraid I haven't much useful medical advice to share yet. I was first diagnosed with POTS by an electrophysiologist (neuros and cardios were baffled), so you might try seeing one of them as Katherine suggested. Keep us posted and ask all the questions you want!

Angela

[RunnerGirl]

Spirlhelix:

I'm so very sorry to hear of your multiple health problems and continued quest for an underlying cause or causes. Some of your symptoms (ie, labile blood pressure) are definitely hallmark signs of some sort of upset in the autonomic nervous system. But that upset could be caused by any number of underlying conditions, and I would be sure my doctor had exercised due dligence in ruling those out before declaring that I had a primary dysautonomia.

A few things that came to mind as I read your message:

1) Have you been worked up for secondary causes of hypertension (I'm thinking specifically of pheochromocytoma), or does the doc think your aldosterone issues are to blame for the high blood pressure?

2) The facial flushing, tachy, and GI issues made me wonder about carcinoid syndrome. Has your doctor ruled that out? It's basically a 24-hour urine test for 5-HIAA.

Mind you, both pheo and carcinoid are rare, but if symptoms warrant they should be ruled out.

Good luck in finding answers (and relief) - and welcome to the board!

RG

[JLB]

What they said...

Just wanted to welcome you to the board. You'll (as you can see) find much help, hope and support here. Let us know what you find out?

[spirlhelix]

Thanks, everyone for your kind responses and encouragement!

Hi, Runner Girl!

I think I recognize you from the pheochromocytoma list. Nice to see you here!

<<

1) Have you been worked up for secondary causes of hypertension (I'm thinking specifically of pheochromocytoma), or does the doc think your aldosterone issues are to blame for the high blood pressure?

2) The facial flushing, tachy, and GI issues made me wonder about carcinoid syndrome. Has your doctor ruled that out? It's basically a 24-hour urine test for 5-HIAA. >>

My malignant hypertension (used to be over 200 every day regardless of medication) was unquestionably due to hyperaldosteronism, which is a secondary form of hypertension. Naturally, I was worked up for pheo about four or five times before that diagnosis, but they did not find what they were looking for (as we know, that is often the case with pheo).

Now that I am treated for hyperaldosteronism, this hypertension must (I figure) be due to a different cause. Here's my reasoning: hyperaldosteronism causes salt retention and consequently hypervolemia (too much blood volume), which leads to hypertension. I think folks on this list are accustomed to the opposite problem--poor salt retention, with low blood volume, leading to low blood pressure.

But I don't think my daily "jumps" into the 200 range are caused by instant hypervolemia. My blood pressure not only rises quickly, it can drop 50 points in a matter of minutes (for example, as measured in the doctor's office and in the parking lot after leaving). I think it has been known to drop 40 points from sitting to standing, although that does not happen every time. If hypervolemia were the cause of the blood pressure spikes, that does not seem possible.

I'm not skeptical enough to believe that lightning cannot strike twice: just because secondary hypertension is the exception rather than the rule does not mean I don't have another case of secondary hypertension going on (in addition to aldosteronism). So I will make sure the doctors look into pheo or other secondary causes, Runner Girl, and thanks for the suggestion.

I will ask about the carcinoid syndrome as well. Better to rule it out than to wonder.

Did you ever find a definitive diagnosis for your medical problem causing pheo symptoms? I hope things have been going better for you!

Warmly,

Pam

[RunnerGirl]

Hi, Pam. Yes, I am also a participant in the pheo website, though I pheo was ruled out in me (about as definitively as possible, given current state of medical knowledge!) more than a year ago. I mostly lurk both there and here, but post when I feel like I can contribute something, particularly in the diagnosis phase. That was such an ordeal for me, and I vowed I would helps others when I regained my health. If I can save anyone time or anxiety by suggesting a test (even just to rule something out), I try to do that.

I think your reasoning concering your belief that your continued hypertension (or hypertensive episodes) is being caused by something other than hyperadosteronism is quite sound. In fact, it very much sounds like the rapid ups and downs could be caused by a disruption in your autonomic nervous system. But since you've already had what sounds like a thorough workup for pheo (did you have the plasma free metanepherine test, or just the 24-hour urine?), maybe it's best to put that to rest and move on. I would still maybe want to do a quickie test for carcinoid, since the cluster of symptoms you have is somewhat suggestive of that. Again, just in case...

Thank you for your concerns about and interest in my own heath. I must say, I have never really gotten a definitive diagnosis. But my symptoms have improved tremendously over time. The consensus is that I am/was suffering from a relatively mild form of either POTS and/or IST. I have some symptoms of both, but don't fit neatly into either diagnostic category. My variant of ANS dysfunction is definitely hyperadrenergic, as I get a rise in both HR and BP, have unexplained nervousness and anxiety, and generally enter fight or flight mode for no apparent reason. At my worst, I would have full blown episodes that would wake me up at night, and I would feel very anxious bordering on panic. Now, I have little mini episodes or 'waves' that come over me where I'm just not 100%. And I continue to suffer from bouts of irregular heart rhythms (mostly PACS and PVCS, and I'm convinced I have had short bursts of afib or atrial flutter, too). But I feel mostly normal and if I don't wear a HR monitor when I train, I can convince myself I AM 100% on most days! All of this came about with very little pharamaceutical intervention, so I am tremendously grateful.

Again, I truly hope you have some good fortune in finding some answers to your ongoing issues. Keep us posted, OK, and let us know if you need any other info!

Best to you!

RG

[Ernie]

Hi Pam,

Welcome to this board.

I am sorry that you have so many health issues. I understand your concerns.

I agree with the others that you should ask for a TTT. That's about the only way I know you can be tested for dysautonomia. You can ask for an EP or a neurologist who knows about those disorders.

We have a list of good doctors on this board. Maybe you could have a look and find one in your area.

Ernie

[calypso]

Just wanted to say welcome! You certainly have a strange set of symptoms. I am like that, too, in that I haven't found anyone here who quite matches how I feel. But this is the closest thing.

I second Runner Girl's idea to rule out carcinoid syndrome. I also would see a hypertension specialist, as they often have the best experience in figuring out the why's and treatment course.

Amy

[spirlhelix]

Just wanted to say welcome! You certainly have a strange set of symptoms. I am like that, too, in that I haven't found anyone here who quite matches how I feel. But this is the closest thing.

I second Runner Girl's idea to rule out carcinoid syndrome. I also would see a hypertension specialist, as they often have the best experience in figuring out the why's and treatment course.

Amy

<{POST_SNAPBACK}>

Hi, Amy

Thanks to you and Ernie for making me feel welcome.

Yes, I already have a hypertension specialist (nephrologist) and a cardiologist (they are often at odds!). I have an endocrinologist too, but those are the two doctors I have been working with mostly during the past year.

Thanks for your good advice!

Warmly,

Pam