Pots/pheo?/a Terrible Week

[POTLUCK]

Sorry to complain. This is just an awful week. I have scheduled my MIBG & CT scan to check for Pheo. Am hoping so badly that it is a benign Pheo so I can get better. ( Of course hope it is not a malignant tumor as 5 year survival is 50% and almost all die early. ) 10% are malignant. I am more stressed that it may not be a Pheo than stressed over if it is malignant.

The stress of the tests ( scheduling, resceduling due to their error etc.) are making my POTS or my Pheo so much worse. I have left the trash can sitting at the curb for days, as do not feel like going out to bring it in. Fatigue, head is spinning/lightheaded often, feel pulse pounding (high not tachy, measured), chest dull ache, nasuea, hard to get myself to eat, or to make anything to eat that requires ANY effort. Yet, only a week ago I walked 2 miles 4 days in a row. I would probably feel better if I exercised now, but can not get myself to do anything. ( I am dysphoric but not sad or blue, no panic attacks and anxiety does not do this to your HR so I do not think there is any underlying psychologic component beyond clearly stress is affecting whatever I have.)

I have been considering if this could be a Pheo but the symptoms are simply to similar to Hyperadrenergic POTS. Off my B-blocker I was a mess with HR (85-105) lying and HR ( over 140 and oscillating to 160 & way below 140) standing. Intermittant symptoms of headache, chest pain, palpitations, fluctuating but always high BP, sweaty, postural change in HR, felt like mountain lion in room, lighthead, dizzy, brainfog, cognitive difficulties. I do not know if most Hyperadrenergic POTS patients are this bad without RX, There is so little writeen on it, it is easier to find stuff on Pheo than Hyper-POTS. Also, Pheo patients frequently have weight loss, as I have had in the last few months, and elevated sugars. ( My Diabetes started with POTS symptoms 2 1/2 years ago and worsened with symptoms worsening 1 1/2 years ago and I am thin -BMI ~22, not common for a DM 2. )

My NE is off the charts but without scans or another test, predictive value is not necesarily high because the tumor is so very rare. ( 1000 per year US, but prevalence .05-.2 in HTN pts which I am clearly when off RX )

Thus, bottom line is I may have it or may not have it at all, I have to wait for the scans to see. The stress is just making my symptoms awful. Also stress tells me that going back to work is going to make my symptoms awful with stress. ( Though there will not be as much stress as waiting for this test. )

Anyways, thank you for listening to my complaints. I just knew there are few people who can understand what is like to feel this bad (without looking like you are walking away from a car crash on the outside) other than people who have POTS so thought I might get empathy, not just sympathy.

best,

POTLUCK

[issie]

POTLUCK,

I so know how you feel. I'm basically hyperPOTS without medicine. There have been so few things that have worked for me and the ones I'm able to take I have to cycle and rotate on and off of or they will stop working. I refuse to continue to increase them, because they can be addictive. I take many natural type supplements to hold myself at bay and support myself to the best of my knowledge - since, I've tried nearly all the POTS medicines and have intolerance to nearly everything I've tried.

That lion in the room thing - is with me all the time. I will be okay one minute and swing into a surge the next. Even sometimes just moving will set my body into motion. I feel an internal shaking and it is also, sometimes, visible - when I'm really bad. There is a certain anxiety type feeling and I can feel the fastness of my heartbeat and then there is the dizziness and nausea. It's a horrible way to have to go through life and think that there is nothing that will make it go away. I keep hoping that one day - hopefully, soon - there will be something new that can be discovered to help. I try not to give up hope - but, some days are hard. The constant, chronic, everyday, day in and day out really wears a person down and it's hard to be positive.

Stress is one of my number one triggers and if I'm worried over something - I usually over stress over that too. I've recently had a bit of a melt down and can't seem to get myself under control. So, with you on that one. I know I'll pull out, but when you hit the bottom - you feel like you'll never crawl out. As for depression - it may be a little bit of that on my part - but, I'm thinking it's just more the wear and tear that a chronic - hyper response of this illness does to you. I can still enjoy things and laugh at things - so not like the deepest, darkest place -that people describe depression as being. It's more of a sadness and a tirdness of dealing with it.

I hope that if you have a pheo. it's not the malignant kind and it can be removed and you'll be back to good again. Don't worry about - the what if's. There is nothing that you have control over at this moment. Take one minute at a time - go out and get your walk and look at the flowers and feel the air - listen to the wind in the trees. Notice the little things around you and try not to think about what you at this moment can't change. We all tend to want to be in control and there comes a point in this illness that we have to realize we are not in control and can't be. So, we have to find things to be aware of other than how miserable we are. Just go sit in a swing in a park and slightly swing - it's very relaxing - like rocking in a rocking chair - it calms the sympathetic system down.

I wish I had some way to take your pain away and ease your anxieties. You will be able to handle this. You seem to be a strong person and will be able to sort it - whatever the end results are. And you're right - you're not alone with this. There are many, many people here of all age groups dealing with similiar - yet different- issues. All of us have that uncertaintiy about our future and what it holds for us. We have nothing that seems very stable - even those that are in re-mission or have found the right medicine combo - still tucked in the back of their minds is the possiblity of another BAD relapse and the disability and uncertaintity that comes with it.

You will have your answers soon. You will have a direction to go. If it's a tumor or if it's HyperPOTS. Take one thing at a time. Focus on what you can do - not on what you can't. Find enjoyment in the little things in life. And realize - FRIEND - that you're not alone in this. We're all here backing you up and hoping for the best for you.

((((((((((HUGS)))))))))))

Issie

[E246]

Hugs to both of you.

I think you can rely on the fact that as POTS is so random you will feel better soon. Hope so!

[POTLUCK]

Thank you. You are right about the randomness, so good advice.

[Chaos]

One time when I saw a local doctor and was describing my symptoms and diagnosis (with which he was not familiar), he did at least bring up the idea of a pheo. He was asking me if I ever had a sense of impending doom/certainty of death feeling. He said his brother had a pheo and this was a symptom he had every time he stood up or went to the BR etc. For some reason this was the symptom that triggered this particular doc to think of this particular diagnosis and get his brother the help he needed.

Noticing you have mentioned the DM issue a few times. Did you by any chance have a history of reactive hypoglycemia in the past...prior to the POTS onset etc?

It seems to make a lot of sense to me that stress would increase our symptoms since we're talking about the same neurotransmitters being involved in both the physical and the psychological aspects. Just because stress makes symptoms worse it doesn't seem to follow that it would have to be a psychological cause for that to occur however.

Sorry you're having such an awful week. Are your tests scheduled soon at least?

HUGS!!

[sweetfeather]

Hi Potluck,

When I first got my really bad POTS symptoms, my cardiologist put me on Midodrine and a beta blocker. I just kept feeling worse with episodes of extreme anxiety. My doctor checked my metanephrines and they were over `10 times normal. She was sure that meant I had a pheo. So I had sonograms and MRI's one after the other until they had done my entire body except my head/neck. She consulted via phone with a pheo specialist who thought it sounded like it was in my carotid artery because of my symptoms and the previous negative test results everywhere else. I think the medical literature said something like metanephrines 4 times normal is virtually 100 percent for a pheo. I was practically planning my obit, I was so petrified and the fear just compounded the problem.

Well, my head/neck MRI didn't show a pheo either! They were talking about sending me for a special test at a research facility to find the pheo they were sure was hiding somewhere. It was terrifying. In the meantime, I had called the cardiologist and asked if I should stop the midodrine because it was contra-indicated with a pheo. Two calls to the office and the nurse never called me back. My blood pressure was so low in the am that I was worried I wouldn't wake up one morning!

Luckily, I got in with an endocrinologist who told me to quit the meds so he could retest my metanephrines ... off the meds...they went back to NORMAL. (I've always had hypotension so when my BP vascilated during my "episodes" sometimes my BP was high for me but never dangerously hypertensive) I read research that mentioned POTS with MCAD/MCAS patients should only use midodrine and beta blockers with "great caution"... so with that clue and a visit to a rheumatologist who listened to me I started the Z/Z protocol and I am feeling a lot better. When my POTS acts up, I sometimes think it would have been easier if I'd had an operable non-cancerous pheo but when I remember the terror of imagining a pheo in my carotid artery... I feel lucky I "only" have POTS.

So... in my case it was either the beta blocker and/or the midodrine that helped send my metanephrines sky high but the silver-lining was it helped set me on the right path to find the MCAS meds that help. I learned that even when specialists are 99 percent sure you have something... they can be WRONG.

BTW, I had very rapid weight loss when this all started and my butt and leg muscles atrophied quickly as if I was starving when I wasn't so that added to my fear I had a pheo. All that worry for naught! Deep breaths!

I pray you get answers soon and I hope you get good news. My best, sweetfeather

PS... a very low histamine diet helps me immensely. I was eating a lot of probiotic veggies... sauerkraut and Bubbies pickles and leftover organic meats during my metanephrine nightmare because I thought they were healthy and I had no idea they were loaded with histamine!

[issie]

POTLUCK,

What if it is the high dose of the beta you're on? Oh, that would be wonderful to be from a medicine. Here's hoping!

Issie

[POTLUCK]

Thank you everyone. I feel a bit better today, and it is good to remember as you pointed out Emma "you can rely on the fact that as POTS is so random you will feel better soon." I am quite certain the stress of waiting is making me far worse the past week and onward, and once I know either way I will feel better.

Although hope it is not malignant, I do hope for Pheo. Sweetfeather thanks for info. Welcome to the forum. I do not have any flushing like MCAD/MCAS but it is something I have considered. I am reading a lot about the test and drug interference. ( believe me ! ) What I have found suggests levels as high as mine are not drug interference. Most interference are mild elevation & even 4x normal was a case report in itself. (From reading:They use HPLC test and thus the drugs themself do not effect the level just the effect of drug on the NE/Epi which is mild, though above normal.) I am very glad you are doing better yourself.

I cannot know whether scans will be show I have it or not. Just have to wait.

best

[Ashelton80]

Hi Potluck,

When I first got my really bad POTS symptoms, my cardiologist put me on Midodrine and a beta blocker. I just kept feeling worse with episodes of extreme anxiety. My doctor checked my metanephrines and they were over `10 times normal. She was sure that meant I had a pheo. So I had sonograms and MRI's one after the other until they had done my entire body except my head/neck. She consulted via phone with a pheo specialist who thought it sounded like it was in my carotid artery because of my symptoms and the previous negative test results everywhere else. I think the medical literature said something like metanephrines 4 times normal is virtually 100 percent for a pheo. I was practically planning my obit, I was so petrified and the fear just compounded the problem.

Well, my head/neck MRI didn't show a pheo either! They were talking about sending me for a special test at a research facility to find the pheo they were sure was hiding somewhere. It was terrifying. In the meantime, I had called the cardiologist and asked if I should stop the midodrine because it was contra-indicated with a pheo. Two calls to the office and the nurse never called me back. My blood pressure was so low in the am that I was worried I wouldn't wake up one morning!

Luckily, I got in with an endocrinologist who told me to quit the meds so he could retest my metanephrines ... off the meds...they went back to NORMAL. (I've always had hypotension so when my BP vascilated during my "episodes" sometimes my BP was high for me but never dangerously hypertensive) I read research that mentioned POTS with MCAD/MCAS patients should only use midodrine and beta blockers with "great caution"... so with that clue and a visit to a rheumatologist who listened to me I started the Z/Z protocol and I am feeling a lot better. When my POTS acts up, I sometimes think it would have been easier if I'd had an operable non-cancerous pheo but when I remember the terror of imagining a pheo in my carotid artery... I feel lucky I "only" have POTS.

So... in my case it was either the beta blocker and/or the midodrine that helped send my metanephrines sky high but the silver-lining was it helped set me on the right path to find the MCAS meds that help. I learned that even when specialists are 99 percent sure you have something... they can be WRONG.

BTW, I had very rapid weight loss when this all started and my butt and leg muscles atrophied quickly as if I was starving when I wasn't so that added to my fear I had a pheo. All that worry for naught! Deep breaths!

I pray you get answers soon and I hope you get good news. My best, sweetfeather

PS... a very low histamine diet helps me immensely. I was eating a lot of probiotic veggies... sauerkraut and Bubbies pickles and leftover organic meats during my metanephrine nightmare because I thought they were healthy and I had no idea they were loaded with histamine!

What is this Z/z diet you are referring too? I have the weight loss/ muscle atrophy and I scare myself looking in the mirror. This is all after a month of my aunt coming in and cooking for me and eating heavily for the last month with zero weight gain. I cannot gain a pound. I do react weirdly to certain foods. Some of them I have noticed in the past are eggs, kale, certain meats that are several days old (gave me heart palpitations) sunbutter, grains, even avocados at one point. Certain foods don't bother me for a while, but if I eat them everyday I seem to develop an intolerance to them. I am at my wits end with food. I know I need to eat to survive, but it's getting to the point where I don't know what to eat and I'm scared to eat anything. I have never broken out in hives or anything major.

Would over the counter anti histamines help any of this? Does this sound similar to what you went through? Thanks

[sweetfeather]

Ashelton80, I'm so sorry to hear you are miserable and I hope your doctors figure out what is going on with you soon!

Warning: long, way too long...

I'll tell you my story...I've had many chemical sensitivities, medicine allergies, allergy-like symptoms, food intolerances, digestive and intestinal problems, rashes, bruising, and many illnesses all my life. My symptoms "wax and wane and are never the same" I've tried to get answers from IGG and IGE food allergy testing, a celiac test, elimination diets, keeping a food diary... I could never get answers why I was so sick and tired all the time.

I had episodes of lower abdominal pain that hurt so bad i was convinced they were ovarian cysts rupturing but my docs thought it was "colitis' type pain. They decided it was IBS. I've had episodes of bloating that make me look 6 months pregnant. I often have nasal congestion, sinusitis, bronchitis, pneumonia, brain fog, inattention, bad memory, fatigue, rashes, bruises, hypotension, low temperature, and on it goes. As I've gotten older my illnesses get harder to treat. If I need antibiotics I have to have the highest dosage for twice as long as most people need. I'm allergic to many of the classes of antibiotics. My latest allergy was to doxycycline and it was my first anaphalactic type reaction with swollen tongue and lips.

I've had periods of time where I seem to gain weight just looking at food and a couple of times where the weight just melted off for what seemed like no reason. I feel like I'm sick all the time and my kids aren't much better. We spend so much time at the clinic they joked they should name a wing after us when they built a new clinic.

I tried almost every diet out there to either lose weight or "get healthy." Good health eluded me. I just kept getting sicker and my digestion was now so bad I couldn't digest raw fruits or vegetables... not even salad! I was desperate when I heard about the SCD diet (Specific Carbohydrate Diet.) The science behind it made a lot of sense to me. The idea is to starve out bad bacteria which thrive on food you can no longer digest because of a damaged gut and replace them with good bacteria. I figured I'd most likely killed most of the good bugs because I'd been on so many antibiotics throughout my life and my malabsorption indicated I probably had a pretty good population of bad bacteria.

The SCD requires fanatical adherence. It is free of polysaccharides and disaccharides and low in lactose. No soy, no sugar, no gluten, no potato, no milk, no butter, no rice, no grains... I read the reviews of the book (Breaking the Vicious Cycle) on Amazon and while I was a little skeptical, I was desperate so I decided to try it for one month. The first four days were hard but after that... most of the brain fog lifted, my bloating was gone, I didn't have any lower left abdominal pain, and my crazy carb cravings disappeared... like many of the reviewers.. it felt like a miracle to me. I enjoyed seven months free of clinic visits. I couldn't remember not being sick with something for that long in my whole life! But never one to leave good enough alone, I tweaked the diet to be more like the GAPS diet. I thought if SCD was good... GAPS would be even better. Wrong... at least for me. Not long after I started eating the foods recommended in GAPS... a lot of long simmering bone broth soups and fermented veggies...What was this? I had a bloating episode! I was sure somehow I'd been gluttened!

Soon after that... my nasal congestion and sinus problems returned. You'd think I would have figured out I needed to drop the long simmering meats, sauerkraut, and Bubbies probiotic pickles. Nope! I figured I must have developed a new allergy or intolerance to something! When I got bronchitis a little later, I thought it was because, well, what could I expect?... my kids were back in school! I continued on GAPS unknowingly eating lots of high histamine foods and my health continued to deteriorate. In November, I got the Swine Flu. I had twelve days of fever. Then it turned into a pneumonia that literally lasted 2 months and required four rounds of Zpacks, a round of doxycycline then Levaquin.. the big gun antibiotic. Surprise, surprise... my old friend candida was back followed by a return of intestinal symptoms.

ALL that sacrificing of foods to starve out bad bugs... all those batches of 24 hour yogurt!!! For what??? I was devastated and I threw in the towel and started eating rice and potatoes. I purposely ate gluten a couple of times and I paid and paid for that with PAIN. My doctor said I must be celiac despite my previous negative test. Then... I started getting some brand new symptoms. First, the ends of my toes started getting red and itchy. A week later my toes started looking purple. I was eating rice and potatoes again and I was unexpectedly dropping weight. I was peeing all the time. I was getting dizzy when I drove long distances.

Then one weekend, I started feeling really terrible. I walked up some stairs and tried to talk and I couldn't get my words out. I worried it was a stroke. I could smile just fine and I felt better after lying down. Then I started feeling funny... I checked my blood pressure and it was the highest I'd ever seen it... borderline hypertensive but i'm usually hypotensive. My feet and legs turned purple, My heart rate was really high even lying down. My hands and legs were cold and clammy. I was nauseous and dizzy. My mouth was dry. My eyes felt dry. My hands were shaking. I had a headache behind my eyes that felt like my brain was being pushed back. I had a slight tenderness in my lower left abdomen. I started to have mild chest pain and palpitations. It felt like my heart was skipping a beat once in a while. And when I laid down... I didn't feel any better. Especially after I saw and felt my abdomen pulsating. I'd seen that years before when I was working long hours standing sliming fish at a cannery. I remembered how at the time I had thought, "my heart has slipped!" And then later, after some sleep I laughed at myself and I convinced myself I must have dreamed it. But here it was happening again. I had my kids feel it. I remembered reading about Ehlers-Danlos and I had some vascular type facial features! I felt doomed. I went to the ER that night in an ambulance and after some IV fluids and a sonogram of my abdomen which didn't show anything unusual, they sent me home and told me to drink more. Within six hours I was feeling so bad again I drove to school and picked up my oldest son and told him he had to drive me to the bigger hospital an hour further away because I was pretty sure if I went back to the other ER they were going to kill me. I told him if I passed out before the hospital one hour away he better pull in but f we were past the first hospital even by a minute when I passed out to just keep driving to the other one.

I had to argue with the ER doctor that an EKG and Echo which were ok did not mean I could go home two hours away with support stockings. As we argued the alarm went off on my monitor because of my heart rate and I said look at my feet and they were bright purple. He suddenly looked concerned and told me to lie down. When I did, I had a right leg tremor and seeing that he ran off to consult with a cardiologist. Three days later, many Iv's and a tilt test later... I went home with the diagnosis of POTS... the condition I told them I thought I had when I got there.

So that's my story... I'm back on the SCD but as low histamine as I can make it. My bloating has gone away again and I haven't had major abdominal pain. It looks like I probably have mast cell activation and possibly HIT because of my positive response to H1/H2 anti-histamines, and the mast cell stabilizer Nasalcrom. I just started a trial of Gastrocrom. Luckily my rheumatologist really listens to me about my symptoms and he acts interested in hearing the latest research I've found. He told me he was glad I was doing so much research because he just doesn't have time to do it. He gave me a script for a methylhistamine test but said not to go off the meds to try to provoke an "episode." He said, "if it's not broke, don't try to break it."

While we need to be advocates for ourselves, I think it is very important especially with a complex syndrome like POTS that we don't try to self-diagnose and self-medicate. I have to remind myself sometimes I'm not the doctor! My husband likes to say, "you're not a doctor but you think you could play one on tv."

Some interesting tidbits:

Leftover meats can be very high in histamine because the histamine keeps increasing in leftover meats even after being refrigerated right away. So the older the leftover meat, the more histamine it is likely to have. Did you know that? I had no idea and I'm fascinated by it. I wonder how much histamine is in jerky? Does the histamine stop increasing when the meat is dried? So many questions! It's important to freeze leftovers immediately because, if I'm remembering it right... freezing suspends histamine production but doesn't destroy the histamine.

It sounds like people can experience kind of a "barrel effect" where they'll appear to tolerate a certain amount of histamine until their personal thresh-hold of histamine is exceeded, at which time their symptoms will become increasingly evident. If this is what is happening with me, it might explain some of my waxing and waning symptoms.

This site has examples of low histamine foods and an interesting discussion about sugar:

http://www.goldbaum.net/balance/Low_Histamine_Diet.html

This site has a lot of info about histamine in foods and foods that might release histamine from mast cells:

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm#foodsource

"From the Urticaria Chapter

The foods most commonly reported to induce urticaria are shellfish, fish, egg, nuts, chocolate, berries, tomatoes, cheese, milk, and wheat.

Foods reported to release histamine directly from mast cells are uncooked egg whites, shellfish, strawberries, tomatoes, fish, chocolate, pineapple and alcohol.

Foods containing histamine—Aged protein containing foods and fermented foods commonly have increased histamine levels.

Foods reported to be high in histamine are fermented cheeses (e.g. Camembert, Brie, Gruyere, Cheddar, Roquefort, Parmesan), brewer's yeast, shellfish, many fin fish, canned fish, tomato, spinach, red wine (especially Chianti), beer, unpasteurized milk (e.g., cow, goat or human milk), chicken, dry pork sausage, beef sausage, ham, chocolate, fermented soy products, and all fermented vegetables, such as sauerkraut."

[issie]

Sweetfeather,

Yeah, all the foods I react to. Thanks for your story - it sounds so familiar. LOL Need to do better with my diet and what I know makes a difference.

Issie