Has Anyone Been Dx With Pseudopheochromocytoma?

[andersondebra]

Hi,

I was wondering if anyone has ever been dx with pseudopheochromocytoma? I seen a new doc who believes that I have this and not hyperadrenergic dysautonomia. I had never heard of this before so I looked it up. It is really the same thing as pheochromocytoma accept that it is not real hence the "pseudo" part. Now when I say it is not real I mean, that you do not have tumor on the adreanal gland therefore diagnosing you with pheochromocytoma, but your body acts as though you have one, causing your BP and HR to go up. Supposedly it caused by some unresolved issue in your life or from trauma, abuse, or stress. The treatment is psych drugs, antihypertensive meds, and psycho therapy. According to everything I have read, when these three things are done simultaneously the person is cured.

My docs are thinking this, because this flare-up for me started after a stressful move, but I do not believe they are right because when I looked it up it also states that the person can suffer an attack every couple of months to several times a day, however, I do not think that you can consider it an attack everytime you stand, walk, or get physical. That is not an occassional attack that is just what my body is doing when I get up. I also do not believe that my stress was that over the top and the move is over and yet I am still suffering to the point of needing to be in a wheel chair.

So, I was wondering if any of you have ever been diagnosed with this and if you have did you go through the treatment and did it work?

[sue1234]

I don't think "pseudo" should be used. If they can measure the increase in catecholamines due to a physical stress, there is nothing pseudo about that. It just means that they haven't found the pheo! If they don't look all over the body, from neck to feet, they might be missing the extra-adrenal tumors called paragangliomas(?). They are essentially a pheo anywhere but the adrenal gland.

Now, if your doctor want to hunt for a pheo or para, that would be great, as they can cause POTS due to their volume lowering.

[lieze]

Wow!!!

I've never even heard of this -but it sounds like I maybe possibly dealing with the same exact thing.

No 1 if there is anything to this don't blame yourself.

I'm not trying to say whether this could be an accurate diagnosis in your case or not-I really don't know you and e even then-I am not one that thinks I'm qualified to make any type of determination as important as this especially.

In comparison I had two stressful events simultaneously one was physical ( chicken pox ) the other involved a threat that would have impacted every level physical, emotional psychological, happiness etc that was made by my husband. It was so extreme and his behavior was so extreme at the time that I actually thought I needed to give him an ultimatum so the thought of what I needed to do-to tell him to get out of me and the kid's lives at the time plus the physical impact of chicken pox broke me down.

I would just say almost every human being has their limit of what they can take and it is just different for all of us.

But honestly I have leaned more towards the virus impacting me than any person and that could be denial on my part. Maybe it was both? In all fairness.

So how do you feel about this diagnosis.

Everyone has leaned toward a psychological cause with me. I don't necessarily feel the anxiety-it just comes out through physical symptoms.

But I guess in my case I just feel like there is something more going on than just at this point a PTSD.

Okay I just reviewed my symptoms with my husbands cousin who is a pediatrician. What she indicated was our psyche CONTROLS our CNS and tells it what to do.

I did not get into anything regarding my husband and the impact of his wild behavior on me. I am speaking of it less and less these days. I guess since I'm not currently living with him I'm not feeling as overwhelmed by it and so it's easier to just not dwell on it as much unless something triggers a memory.

I have always had anxiety and some of my feelings regarding having to do active things have always been there. They are just greatly intensified.

I guess if I had to guess what part of my illness is physical vs. Psychological I would say 60/40.

I'm really interested to hear your thoughts!

[andersondebra]

Leize-

I know that if I have this dx, that to a certain degree I cannot blame myself, but it is my mind that I let get to this point, so I actually do blame myself. However, I really do not think this is my dx, because my stress was not really out there, I have had way way more stressful events in my life that never brought on this kind of physical reaction. Also like I said, everything that I have read on it, says that the person suffers with attacks, I take that to mean episodes that come and go, maybe even brought on by a triggering event or flashback to the original stressing event that brought it on. That is not me, I have high tachy and BP EVERYTIME I get up from a sitting position or get physical. Lets put it this way, I cannot take a shower without being left gasping for air because my HR is at 165 or higher, causing my heart to not be able to bring oxygenated blood to my lings or brain, and I don't think that taking a shower should set off an attack if my precipitating stressful event was moving,which had nothing to do with showers. You see what i am saying and why i think this doctor is off his rocker?

As for what is going on with you, it sounds like you may have some psychological issues that could at times bring on a PTSD type of moment or something like pseudopheochromocytoma, which in that case you may benefit from talking to someone. However, like me if you are finding that you are having these attacks when you do not find yourself in that scary place that your husband put you in before than you too may also still have some other kind of physical issue going on. It is not to say that you may have more than one reason for your illness. but if you feel that you have moments of high stress and anxiety because of what you went through (which by the way I am sorry that this has happened to you) then you should talk to someone, it definetely can't hurt.

By the way I am actually going to see a psychiatrist this wednesday to talk to him to see if he thinks this is my problem. I am not afraid to go see a psych doc, I just wan to get better and will try anything.

I hope you get better

Debra

[andersondebra]

Sue-

I wish my doctor would look for a pheo or para, but he feels as though this is in my head and has sent me to the psych, which is fine I will follow thru with it,but I think he is totally off here and agree with you that if the levels are coming back high than they should be looking for a physical issue. I can tell you that my levels were high both in my urine and blood and my halter showed tachy spikes up to 178 bpm at 1:30am, while I was sleeping, I don't think I was having any kind of attack in my sleep, LOL! My BP monitor which I wore for 24 hours and recorded BP's every half hour showed BP spikes as high a 198/113, while sitting on the couch and watching t.v. and then would go back down after about 20 minutes but would my resting heart rate stayed higher than normal, around 138/100. So, I really -really believe that something more physical is going on. I just can't prove it and my doc won't believe it. So, I will follow his suggestions, but I am looking for another doc.

Thanks,

Debra

[lieze]

This is how I was in the beginning too.

Body was just out of control.

Couldn't shower etc and eating brought on symptoms.

My head was scary.

I was afraid to know what was going on in there.

Popping and clicking.

It would feel like I was blowing blood vessels and they were oozing down.

I would see halos around lights.

Had a feeling like I was gonna fall when I walked.

Horrible migraines.

My CT scan of the head I just had was normal.

I couldn't believe it.

My head literally felt like spaghetti.

The SVT's I started having although doctors told me were harmless were often triggered by stress and sometimes just came out of the blue.

Yes I had both just out of the blue or random symptoms and those that I noticed like going to work or walking into a store my heart would go up to 130 and just hang out there.

Just that heart rate made me feel anxious and short of breath and would give me a fight or flight feeling.

I would just say I almost just have no tolerance for stress at all. What would be a very low level of stress sent me to the moon and back.

It really just felt like my body was totally out of control.

I would wake up screaming or gasping for breath or with heart beating so fast it felt like it was just gonna stop and I was gonna black out.

I would describe myself as a car with the accelerator stuck all the way to the floor. There was no balance. My body did not know how to gently press on the gas and let up as appropriate.

So that is what I can remember from the beginning.

I had body shocks that went through my arms and legs and muscle twitches.

It sounds similar to what you are experiencing.

My bp's didn't spike as much they dropped more although one time at work I just felt horrible and took it and it was 150/90. My norm is 90/50.

I am no longer working-due to all this.

Does any of that sound familiar?

Still if it does I do not have a diagnosis of anything so it proves nothing even if we do have similar symptoms.

[Guest maia]

I agree with Sue.

...and absence of evidence is not evidence of absence!

If your doc thinks its all in your head and you dont, take all your labs and scans and go to a different doc.

[andersondebra]

Lieze-

It kind of sounds the same except that my BP goes up and keeps climbing the longer I stand, on my tilt table test the last reading they got before I past out from lack of oxygen was 223/120 with a heart rate of 178. This was the highest reading I have ever had but they slowly watched it climb as I was on the table and they kept expecting it to come crashing back down, but it never did. Fianlly, I told them that I was nausas and I could not breath, the next thing I remember was waking up on a flat table with a tube down my throat breathing for me. Appearantly I had stopped breathing as well. This whole incident on the TT took all of 4 and half minutes for me to reach that level and stop breathing. Since that test I have had several more occassions of passing out but never stopped breathing again.

As of today I can stand for about 5 minutes total and then I can no longer breath b/c of the high heart rate. My BP goes up but if I sit right back down with 5 minutes and take my BP it usually is around 158/110, but it will steadily fall the longer I am sitting down. My usual BP is low it is 90/64 and has been known to go as low as 73/42 while sleeping in the hospital.

But for me this happens every time I get up. I do have a wheel chair now b/c my docs are scared of me fainting and or stop breathing.

What happens with me is that when I get up or get physical my BP and HR both start going up but they do not stop going up or level off like they should. Once this happens, even if I sit down or lay down my BP and HR will go down but not to where they normally would be and then I get left with a pounding headache, blurred vision, tremulousness throughout my body, a foggy mind feeling, I'm uncoordinated and very fatigued as if I had just run 20 miles at top speed. I also get chest pressure as if someone is sitting on my chest and if I stay up to long or if the BP or HR goes to high I will get a squeezing pain in my chest like I'm having a heart attack and the viens in my neck bulge out and hurt. This only happens with getting up or getting physical, although I have gotten slight quick episodes while trying to fall asleep (especially if laying on my left side) and when sitting on the couch watching tv, but these episodes usually disipate within minutes.

The tachy they seen on the halter was a normal sinus rythm so my docs said to that it was nothing to worry about, except for the breathlessness that can come from the extreme hr going on to long. I don't have problems when eating, or when in my wheelchair in a store, but sometimes I can have an episode when my husband speeds up the car on the highway. It is like the G-force sets it off.

I was originally dx with hyperadrenergic dysautonomia three years ago at Vanderbilt, but after about 9 months of treatment I got better and for the past year and half I have not had any problems with it. Then around May of this year I noticed that I was getting short of breath with exercise, I went to my doc and he checked me for everything lung related and said that there was nothing there he could not explain it, so I just cut back on my activity and adjusted to it. Then In August we moved and I noticed that while moving boxes ect.. I began feeling heart palpatations and really had shortness of breath to the point of having to sit down. Within three days of moving I was rushed to the ER and was admitted because I was in a "hypertensive emergency" my BP was staying over 200/ 100 and my hr was staying above 165. I was put in cardiac intensive care unit for five days. I was given BP meds through and IV for the first 3 days and then by mouth after that. I was kept quiet and lying down trying to bring the BP and hr down which it did come down slowly over the three days. however, I am now left not being able to get up or walk, even with meds. The docs checked everything again while I was in the hospital but found nothing to show the reasoning why. The only thing they did find was that my heart is slightly enlarged on the left side and I have lost some of the elasticity of the left ventricle, supposdely this is due to the extreme high BP and HR that I have been having but this damage should not cause what is going on. So, they dx me with this pseudopheochromocytoma, which I am finding hard to beleive but we will see, what comes of it with the psych doc. I am supposing if he says no that is not what it is then we are back to probably dx this as another hyperadrenergic dysautonomia attack and we will see how long it lasts this time.

OK so that is my story, does it kind of sound like you? from what you have posted I think we have somethings that are the same but somethings are different, what do you think? Also do you ever have times where you can walk or get up without having any problems with your HR or BP and if so is it b/c you are on heart meds?

Sorry for the long post, just wanted to put it all out there to see if you and me are somewhat the same maybe between us we can bring more info back to our docs to think about.

Thanks,

Debra

[lieze]

Debra,

I don't have anything near this extreme.

I can get up and walk and have normal vitals.

What happens if I over do it-maybe sounds like what is happening to you I get extreme symptoms nausea, shortness of breath, chest pain, palpitations but vital signs are within normal range.

I just think they don't know what is causing it and it's hard telling if the meds they want to prescribe will help. The side effects of some of those meds do affect bp's either increasing or decreasing potentially so it seems you need to be cautious as to what you take regardless as to what they think is causing it.

I'll be interested in what input you get from the psychiatrist.

I am not on any heart meds-too dangerous for me.

[HopeSprings]

"you do not have tumor on the adreanal gland therefore diagnosing you with pheochromocytoma, but your body acts as though you have one, causing your BP and HR to go up. Supposedly it caused by some unresolved issue in your life or from trauma, abuse, or stress. The treatment is psych drugs, antihypertensive meds, and psycho therapy."

Wow - that's a new one! I don't like it, sounds like nonsense. I'd find a different Dr. who will take you seriously.

[andersondebra]

Naomi and Maia-

Believe me I am looking at seeing another cardiologist, but I cannot get in to him until Oct. 12th, so until then I will go to the psychiatrist only because I want to know what he has to say about this dx, which i agree sounds like a pile of " I don't know what the **** is wrong with you crap", but they have run every test imaginable and can find no reason why my body does not regulate the adrenaline upon standing or getting physical, so I don't know what to think either. I have had hypertensive emergencies which is what brought them to thinking of the pheochromocytosis dx but when tested for it, it was negative, so that left them with this pseudo dx of pheo, because it is the only other thing that they can find to fit it. So, I will go see the psych doc but also going to see a new cardio too. Look-up pseudochromocytoma and you will see it sounds alot like me, except that my problem is not just attacks that come and go they are all the time, so I don't know what to make of it, I guess much like the docs.

Leize- So, you are much different then me. YOu are able to walk and do things, which I am unable to do right now and your symptoms come and go where mine are constant and my vitals are never good and that is the reason why there is now heart damage and I could not live without the heart meds b/c without them my BP and HR would go through the roof and will not come back down, which can lead to a major stroke and more heart damage, so there is no choice for me. Besides I do feel better on the heart meds, it takes the headaches down a couple of notches and makes it easier for me to breath. Anyway, I hope you find out what is wrong with you and I hope you get better. I will let you know what the psych doc has to say about all this, I see him this Wednesday so I will report back.

[lieze]

Yes we are different but it could be that psychological factors have affected my health and caused a similar issue for me only it hasn't caused hypertension in my case but more tachycardia, adrenaline surges and chemical sensitivity in my case.

I fit the psychological profile that they describe where I internalize my stress and can't cope with it.

And being married to a person with extreme bizarre

behavior has not helped. It's just been ongoing stress that I cannot cope with.

I guess they are seeing a pattern in people where stress causes certain type of presentation of symptoms. In looking it up I saw another name for it is paroxysmal hypertension. I guess finding a treatment plan that works is what is

important.

Be sure to keep us updated.

I am sorry that you are going through this and the damage that it has caused to your heart.

Whether this is actually going on with you or not I hope you do find help-thanks for wishing me the same.

[sue1234]

I'm sorry, I don't understand. You said in your last post:

I have had hypertensive emergencies which is what brought them to thinking of the pheochromocytosis dx but when tested for it, it was negative, so that left them with this pseudo dx of pheo.

But in one of your earlier posts, you said:

I can tell you that my levels were high both in my urine and blood

I may have misunderstood, but I think they did find high levels of catecholamines in your urine and blood, but negative scan for growths on your adrenals? They really need to do an MIBG(?) scan to look all over the body.

IF you would happen to have a pheo or para, the normal protocol is to be on an alpha blocker FIRST or the symptoms of high blood pressure get way worse. After a little while, they add in a beta blocker. So, are you on just beta blockers?

[lieze]

This is the wacky part on my test Sue I was elevated on the serum but not the urine.

Evidently the pseudo type does cause high elevation of catecholamines due to the fact that the sympathetic nervous system is stimulated intensely causing all these symptoms or so that is their theory.

I was offered the full body scan with radioactive dye that takes several days and I declined based on where my symptoms were and I just felt too weak and everything exhausted me. I could not imagine having to go through that talk about a total body crash!!!!

I guess if my symptoms were as serious as Debra's maybe I would consider it ???

I realize I'm getting in the middle of this.

I am so intrigued by this!!!

Whatever happens Debra I hope you find a way to manage this.

[issie]

I have a friend that had similiar things with her heart dizzyizzy, and they found that there was a hole between the chambers. It shows up in the late 40's and 50's. They repaired it with a plug and she is fine now. It caused one side of her heart to enlarge. She was having shortness of breath and all the things you are describing. Except for the blood pressure issues. They can only find it with a angiogram (I think that's what it's called) where they feed the camera from the groin into the heart.

The blood pressure issues sound like me. I have exactly the same wild swings. I wonder if some of this is not EDS related. When we stand the veins don't respond properly and causes this increase in bp. I've recently started taking l-arginine. I have to divide it into 1/4 or it is too strong - but I'm spacing it out over the day and my bp is allot better. And it's seeming to help my fluid levels to be more balanced too. I hope it continues to go in the right direction - today is day 5 of this. I'm feeling positive about it so far. My bp's are more level now and being upright isn't quite as bad.

Issie

[juliegee]

Pheochromocytoma is a part of the differential for mast cell disorder. This is one thing that must be ruled out before a DX is given. Just a thought...