http://bbs.stresscenter.com/eve/forums/a/tpc/f/640105472/m/8221063632

For years I was told that I was depressed. I was taking many medications some of which almost killed me. What I actually had was a phaeocromocytoma, that is a tumor on the adrenal gland. The reason I'm telling you folks this is because to most doctors this ailment looks like panic attacks. With a phaeocromocytoma what you get are head aches, severe chest and arm pain, hart pounding,racing hart sweating, heat intolerance, gray pallor, burning skin, high blood pressure with slowing hart rate. The headaches are so bad you will scream your lungs out.

If a doctor has given you a Beta blocker with the results being extraordinary slow hart rate this is a good indication of having a phaeo! If you have taken Cymbalta or Wellbutrin and ended up with a massive panic attack again this is also an indication of a phaeo. Anything that brings your adrenalin up even coffee will make you have what seems to be a panic attack.

Normally doctors will check your Thyroid gland because the Thyroid controls the adrenal glands. Test the thyroid is done by doing blood testing. Testing adrenal glands is done by doing a 24 hour pee test! If you are having panic attacks have your doctor check your adrenalin levels if they are way high you have a problem

I just had this phaeocromocytoma removed and I feel TONS better. No more panic attacks, no more sweating, shaking, burning, hart pounding and the like. Its all gone and I'm back to normal. The change was so overwhelming that right out of the OR I really couldn't define my pain levels to the doctors. I felt better then Ive felt in 15 or so years. The pain of the surgery was so insignificant compared to the pain I had been in is was hard to define the pain from the actual surgery.

Here's the deal its relatively easy for the doctors to say its all in your head. Its sometimes much harder to find the real problem. What I did was to track my symptoms. I got all my Xrays, CatScans, MRI scans and all notes the doctors had made. We put all this info together in one book and we made sure the book was organized and tabbed. We looked for improper drug reactions and symptom patterns. What the doctors were telling me I had only partially fit the symptoms. I had lots of symptoms that they had no real explanation for. Like my massive headaches were called "Exertional Headaches" which is a real meaningless term. A Phaeocromocytoma is a real medical medical term where a Exertional Headache doesn't mean much.

From the beginning I suspected there was a problem with my adrenalin. I often heard doctors say things like "he's loaded up with adrenalin" Another clue was that after these panic attacks I'd be left shaking so hard I couldn't hold a fork. I told one hart doctor that I understood hydraulic systems and that I thought that something was blocked causing blood pressure to rise while slowing the hart down. I was told this was not possible while in reality it was totally possible and again is a noted symptom of a Phaeo!

What was another give away was the fact that one emergency room doctor did suggest I be tested for a Phaeo do to how I reacted to the Beta blocker. Somehow this request was not followed up. Only when I collected all the doctors notes did I understand that I had been Tagged "nut case" Once I started out with new doctors in a totally different medical system did I start to get better answers. They found the Phaeo on the fist visit and confirmed it with an MRI.

Upon further investigation I discover an old MRI I had about 4 years ago. At that time the Phaeo was causing all kinds of muscle cramping and I couldn't urinate. That MRI clearly shows a big Phaeo so clearly it almost impossible to miss. As a matter of fact this Phaeo is so clearly defined I showed it to my surgeon. No one has ever shown me the tumor but even without training its very easy to see. So here you go in my case there were lots of mistakes make, many of which could have very easily killed me. I think getting a second opinion is a really good idea if your medical situation is not improving or is getting worse.

I'm going to see an endocronologist in a few weeks, do I just ask for the adrenal test (pee test) or is there a particular test name?

Some of the symptoms you have, I have, but I'm on week five of this program, and I'm getting better. Although, sometimes I feel like the adrenaline is squirted into me during my sleep (which on most occasions I still can't control). This leaves me feeling the after effect when I awaken.

I will see the endocronologist soon, and ask for this test to be done. Doesn't hurt to rule this out!

God bless, Suz

I took a 24 hour pee test. This is where you pee into the bottle for 24 hours. Although they can find many problems with this test in my case they were looking for a specific set of long lettered chemicals that when found in quantity denotes large amounts of adrenalin. In my case I had 5 times the normal amount.

When I would get a shot of adrenalin it felt like someone pouring HOT led into my body. As the burning spreads I start to shake uncontrollably. Muscles would tighten around where my neck attaches to my head. My heart would start pounding and actually slow down while pounding harder. Since removal of the Phaeo I don't get any of this any more. I still get cramping muscles here and there but thats it.

Good luck hope they find something.

Thank you for this information. I will definitely take this test. I'm still waiting for approval for my HMO to approve my Dr. visit, if they don't approve I will pay for it myself.

Thank you again, and God bless!

Suz

I have some of those things too, but the program is helping me alot. I know that you meant well , but know it is another thought in my head. "what if." Thanks for the information though maybe I'll get it checked out!

I kind of look at it like this! It might be in my head to some degree and its easy to say that its in my head. But if I can find a physical reason for a problem I'm going to look in to it. I've had this Phaeocromocytoma for 15 odd years. The doctor says if I was ever really depressed I deserved to be depressed. I has five times the amount of adrenalin going through my body. This has a tendency to really do a number of a persons head. Saying "what if" is not always a bad idea. For all those years I went along with the what I was told and that was OK but there is always that possibility that they are wrong. I got a clue when the drugs they were giving me were sending me to the emergency room where I almost died. If you are having panic attacks and your adrenalin levels are through the roof you need to find out why! All I'm saying is to always be on the alert for new ideas that might help you get better because anything is better then being sick all the time. Even though they found my problem it may take a year or more before I'm functional again. It took me 15 years to get this messed up, its going to take awhile to heal back up. This is true with all sicknesses. So hang in there and get tested if you think it might tell you something. One other thing, I got all my records from all my doctors. I got all my x-ray, cat-scans, MRIs. I put them in a book so I have a full runing record of everything and anything the doctors did to me. You see when we did this we found out that years ago one doctor did have a clue and wanted me tested for a phaeo but it was dropped. Looking at the notes we found it and I got tested and guess what?

God Bless!

Didnt mean to be rude. I just start worrying about stuff. but I think I'm ok becuse when I start having one I do the things in the program and they go away. Im ok right?

I didn't mean to seem forward or harsh but what your saying is exactly what I'm talking about. Too much adrenalin causes people to worry constantly about everything. Everything "might" be a problem. You may even get the idea that you may have all kinds of diseases. This thing will cause all kinds of phobias so its a good idea to check it out. Too much adrenalin is FIXABLE and so why not check it out! That's all I'm saying because this adrenalin thing will often stop people from doing what needs to be done. If it wasn't for my wife I would have hid until I died.

Yeah, I just get way too excited sometimes. I have too tell myself it will be ok and it goes away. I feel like I'm falling out of the sky or something.

Yeah there were times I got so messed up they had too pull my off the roof in the ER. It took powerful drugs to calm me down. To the doctors it looked like I needed to be in a rubber room. It was frustrating because when I ended up in the ER they docs had no idea what they could do for me. What was nuts is that many of the antidepressant drugs they were giving me were making me sicker. One drug a Bata Blocker slowed my hart down to 24 bpm! That is one beat every two seconds, thats slow. Do people sometimes think you are one of the walking dead because of your color? I would go gray and white at times! People would move away from me when they saw me coming. So glad its over now!

Yeah sometimes I get realy cold and I turn totally white. I had to go to the er one time and my bloodpressusre whs unnormally high. Like I was dead or something. They didnt know why. They couldnt do anything for me but wait for it to raise to normal. It was scarey.

My son has phaeocromocytoma and it took over a year for it to be diagnosed. Initially, his hypertension was treated as a renal issue and lots of tests and medicine was given to alleviate the issues. When they could not find any answers, they simply said it was "Essential Hypertension" and left it at that !

Fortunately, we have a consultant friend who persevered and searched for the cause of the hypertension. An MIBG test was the clinching point, when we managed to find the cause of my son's hypertension.

I am just aghast that none of the other doctors saw the signs my friend saw from day one and they searched in several directions when the signs where easy to read.

We are now doing more tests - including the 24 hour pee tests - to confirm things and hope at the end of this, they will be able to operate and cure him quickly.

I'm glad they are on the track of this thing. A Phaeo left too long can and will damage your body. I had extremely high blood pressures that in the end has left me with limited movement on my right side. "Essential Hypertension" I have to laugh! Basically they are telling you what they were telling me! "Its all in your head!" What blows my mind is how can supper high blood pressures be in your head? When people's blood pressure is over 240 there is something wrong! You think? One of the first things I would check with any person having supper high blood pressures would be adrenalin levels. If I would have stayed with my health care provider I would be dead now and it would have been an extremely painful death. One problem with Phaeos is that the tumor isn't always easy to see or find. My tumor was LARGE, golf ball size. I have my surgery on DVD and its interesting watching trying to pull the bagged up tumor out of my body. Lots of pulling and tugging to get it out. If it is a Phaeo your son needs to not do anything and stay still. I also took stool softeners so that I wouldn't strain on the pot. Going to the bathroom often set me off. So be careful and get that thing out of him and he will be OK. My Surgeon was Dr Roger Tatum in Seattle. He's the best at Laparoscopic surgery, he not only does it but teaches it too! Let me know what they find in the end!