kayjay

Yup and yup! Lol. I will say that I went gluten free in 2009 and still have pots but my gi issues have resolved. If you have been diagnosed with "ibs" I would suggest looking into fructose, lactose, and gluten intolerance(s). In my opinion "ibs" is a "cr@p" diagnosis. My daughter was told she had ibs- a simple breath test for fructose uncovered her issue.

Rama- I just got the ok to try it from mayo (Rochester) it is helpful for fatigue. Certainly not a cure. I take 100 mg but I can take 200.

Sorry . Don't forget to take care of yourself too! I know as moms we sometimes go on auto pilot.

This is how mine was done. A 24 hour urine on me will test positive for pheo (every time). I realize that I'm probably quite hyper but I wouldn't recommend the 24 hr urine test. I spent a week at NIH because of 24 hour urine false positives. Not fun:(. Plasma tests at rest compared with a few mins of moving around is more accurate. I would imagine that ANY potsy would have high ne during a tilt table test.

I got better after pregnancy- The birth of my first child was definitely a trigger. I have been essentially bedridden (I crawled to the bathroom). I was most recently bedridden a few years ago after a viral illness. It's not uncommon for me to be semi-housebound although it is much more rare that it used to be. I don't recover well from viruses if I have a fever. My normal body temp is high anyway. I was told to avoid fevers which is pretty hard. My children are expert hand washers and stay pretty healthy but I have nieces and nephews. It seems that in the winter I can't avoid contact with sick children although I do try to limit it. I get really stressed out about it because I have relatives that will send their children to my house and I find out that someone had a fever the night before or was throwing up. Recovering from a severe illness (pregnancy too) takes a long time. Improvement was very slow but it did happen. Please be encouraged. For a long time I couldn't even ride in a car without a bucket. Eventually I was able to drive my children to the bus stop. Then I was able to drive them to school. Tomorrow I am making a 2+ hour drive. (I will have to stop half-way but that's not too bad). I used to sleep for 10-12 hours at night with at least 2 naps during the day. I woke up just to say good bye to my children and basically slept all day when they were in school. I have to lay down and I sit a LOT, but I usually can get through the day without naps. I rarely have migraines anymore. I rarely have vertigo. I almost never vomit at this point. I'm still exhausted but I don't sleep all day. I went to church this morning. I don't stand and sing and I do put my feet up. A few years ago I really couldn't go. If I did I was very sick when I was there and in bed the rest of the day.

I would say my doctors think my pots is pretty serious-not deadly- but severe. I actually went from having doctors not think I was sick to having my cardiologist tear up and say "I'm so sorry" after my tilt table test. The doctor who administered my tilt table test was so kind and encouraging. He thought I was a "hang tough" kind of person and that I wouldn't go down without a fight. It made me feel so affirmed and understood to finally have doctors that "got it". Just judging from what others have posted on this site I'm guessing that some of my numbers are pretty extreme- even for pots. It wasn't uncommon for me to have a 100- 140 bpm increase in heart rate and I'm not talking about a few beats of tachycardia. The whole 30+ increase for me for the diagnosis kinda scares me because I know my resting heart rate can be in the 40's and my standing can be in the 190's. I think doctors do tend to look more at data. It makes sense. I personally am just thankful that I almost never pass out- I always can tell when my Bp is getting low. I can't imagine how hard it is for those of you who pass out frequently. Also my pots (because of it's really "hyper" component) may be viewed my doctors as trickier to treat than "normal" pots. It certainly doesn't me that I'm any sicker than "regular pots", but from a doctor's point of view they seem to be fairly selective and rigid in terms of what medications I've been allowed to try. Doctors in general seem to worry more about high blood pressures than low ones...but high ones don't make you pass out and break your nose! So yes, every time I see my doctors I feel sad that I'm cured, thankful that I'm no longer bedridden, and I feel understood. It only took 10 years! Lol

I second what Kellysavedbygrace said! I find that because I have said "no" to so many social events I don't get invited much anymore I am not sure if this helps you but there are a lot of lonely people in the world- even sometimes those who are in a crowd of people. A positive thing about this illness is that I have gotten comfortable being alone. Many people never get used to being by themselves. I talk to God a lot and I talk to my pets ( not sure if you have any). I keep a notebook which is full of the needs of others. It is my prayer list. yes, I do pray for myself too, but it puts my mind on the needs of others. Today although it took most of my energy I made a meal for a woman who is sick. It was hard for me to do that but it changed my focus for a short time. I just want you to know that you are not alone in feeling lonely. At times I feel as though I am getting left behind by everyone else. I almost feel a little envy when my 60 year old mother tells me about her tennis matches. I feel like I SHOULD be running around after green felted balls. Try to stay hopeful that tomorrow will bring better health! I can't look too far ahead because I get overwhelmed. Anyway hugs to you-

I have been gluten free for about 3 years. I will never go back to eating it, however it took me a long time to notice an improvement. I want to say that after a year I really noticed a big change. Off of gluten I have no IBS at this point. About two months ago I was accidentally given gluten in a restaurant. I don't get sick right way but when I do eat gluten I am sick for about 3 or 4 days. I still have POTS but almost never have any GI problems or migraines. Hope this helps. It is a hard diet to stick to until you are sure that it helps. Now it is a piece of cake (G free of course).

I am gluten free. I was diagnosed with IBS. Almost totally resolved with a ZERO gluten diet ( so I'm guessing I dont have IBS My daughter recently had to go off dairy and I went off with her. I am even better. I miss cheese but am finding new ways and new foods to cook and eat. It took me months ( i think between 3 and 6? ) to feel better. I highly recommend thinking about g-free. It helps a lot of people, but for me I had to eliminate it completely.

The only teenager I know who was diagnosed with POTS as a teen IS better. She is now a doctor herself and is doing great! Be hopeful! She managed quite well to finish her schooling, get married, and work crazy hospital hours.

I looked it up. A preservative is important because the PH causes the hormones to be broken down. There is another possible preservative but I forget how to spell it (sorry).

Southbel, Pheos are so rare I don't think most labs know how to do them! I was told that there are about 800 diagnosed each year in the US. I am not sure what the HCL does but as far as I know it is important. My most recent test was 3 years ago but the hospital redid the test because the first one had no HCL ( hydrocloric acid Not sure of the spelling). My first pheo test was though a LabCorp and had to be redone also because they forgot the HCL.

I'm not sure about the thread but I am gluten free and it has eliminated all of my IBS symptoms. I believe that it has also helped my POTS. It is hard at first but now it is second nature to me. I will never go back to eating gluten. I read a lot of books on the topic but the most helpful one for me was "Gluten Free for Dummies" by Dana Korn. If you like rice a rice cooker is great. I got a cheap one at target and you can start it and simply walk away. I make rice for my daughter and myself if my husband and son are eating a starch with gluten. It took some time before I felt better ( I think more than a month). I also can't have any fresh dairy. Best wishes to you. I hope it helps you!

I'm just going to put my story out there. The endo I saw at John Hopkins I kinda hate ( sorry I'm working on that). He was my best doctor ever when he thought he would have my tissue to research. He told me he was 100% sure I had a pheo. NOT 99%. He is a brilliant man and one of the experts in his field in our county. I'm not sharing his name because I am bitter and I know I need to forgive him. ( part of me would like to poke him in the eye though). I saw Dr. Karel Pacek at NIH. He is an international expert on Pheochomacytoma. I spent a week as an inpatient with him. Once you have a positive test from an endo. the doctors will want to look until they find one. A cat scan is only the start. PET scans, swallowing radioactive material etc. are how they are ruled out. Even then you may be told that the tumor is "Too small to find yet" I am repeating myself when I say I wish POTS had been ruled out first!!! All joking aside ( and I'm not God not do I know the plans he has for me), I fully expect to die from some kind of cancer from the radiation I have been exposed to. I am not even sure if I should get a mammogram...as in EVER! Doctors want the pheo tissue to study. I had two different doctors wanting my tumor before it was even found! A simple tilt table test would have basically ruled out a pheo for me. I had every symptom (including episodic flushing and blood pressures over 190/120. I do not have a pheo! I spent years thinking I had one that they couldn't find. If I could do it over I would have had the plasma test where they check you for metanephrines laying down and standing. During a tilt table you are upright but not moving. Movement ( or even urinating) can trigger the release of hormones from a pheo. Every endo I ever saw was convinced that I had an adrenal tumor! I realize some people do get them but I have "very?" hyper POTS. Urine tests and blood tests have no lasting bad effects but did not give me the right answer for why I felt like I was going to die! If you do a 24 hour urine make sure that there is HCL in the container and that it is refrigerated. I checked my records and I had 7 of these. They are a pain to do over. GOOD LUCK all, and sorry for my rant. I am the worlds worst speller but I can spell pheochomocytoma without even thinking about it... so that says something! Also MRI's are not specific for pheo's. Doctors use them but prefer the PET scan when available. MRI are not considered harmful. MIBG scans are nuclear studies. I'm not to happy about that Cr@p I drank for those either.

I had a MIBG scan that they thought was positive. ( a shadowy spot on my bladder). I also had PET scans ( actually at NIH you are a guinea pig so after a week there I am pretty sure I glow in the dark). It does make sense to rule it out. As rare as they are every doctor seems to know about Pheos from medical school. I can't speak to my cortisol level. I don't know what it is. As for the heart rate jump, mine has changed over time. It was in the 170 ( from 60's just from standing. Yesterday I took my hr and bp. It went from 50 to 93. Still well over a 30 bpm jump. but not 110 bpm. I wish I had ruled out POTS before I had all of testing for the Pheo. I had never heard of POTS at the time. Maybe a second opinion is a good idea. It couldn't hurt. After all the testing went through for a Pheo, I am afraid to even get dental x-rays. Another thing to consider is that when done properly, I think the plasma test for a Pheo is more accurate than the 24 hour urine test. I hope you get answers and feel better soon.

I am a bit opposite! I talked almost the whole time. keeping mentally active helps me not pass out. The doctor who was with me during the first one, told me that it was my way to try to keep blood up to my brain. I was very confused and was calling the nurse by the wrong name. It was silence and a darkened room when they tested me for hyperadenergic tho

I haven't been on for a few days, but after several positive urine tests the endo at Hopkins told me that he was %100 sure that I had a tumor but It was just to small to see. Fast forward almost 6 years I ended up being admitted to a hospital and was given a tilt table test. I do have pots... no PHEO! I think the big symptom difference between the two ( hyper POTS and pheo ) is the onset of symptoms with standing and positional changes. I don't know anyone with a pheo but endocrinologists get pretty excited with the prospect. Just before I was diagnosed correctly, an endo in philly told me that she was sure that I had a pheo as well. The urine test is a 24 hour collection so as I was moving around my results were postive. At nih they did many blood draws when I was in a hospital bed ( negative). Not to say that I don't have symptoms of pots when I am laying down or seated. I just never got the crazy high numbers that were collected when moving around. I had at least 3 or 4 24 hour urine tests and they were all high enough to indicate a tumor. Mayo clinic formally diagnosed me with the hyper pots ( also hyper pots does not mean that you have high blood pressures). Mine go too high and too low.

I also drink coffee sometimes. Just knowing how the two work on my body, I wouldn't try it if you have negative effects from caffeine. My heart rate is also sometimes really low ( like the high 40's). on days when my HR is high I do not drink coffee. I am sensitive to it's affects but sometimes it helps me with my lack of energy.

I was incorrectly diagnosed with this tumor by Johns Hopkins ( positive 24hr urine tests) but do not have it. I actually spent a week at the NIH while they looked for a tumor. I do have hyper pots. I guessing very hyper since I tested positive for an adrenal tumor They are extremely rare ( more so than POTS). The good news is if you do have a pheo surgery is a cure.

I was also told that they are usually not malignant and are bilateral less than 10% of the time.

Sorry you are going though this. I was misdiagnosed with a pheo by Johns Hopkins Hospital. I had 3 or 4 positive 24 hour urine tests for this tumor. I was then sent to the NIH for further testing. After a week there of scans and testing doctors discovered that I don't have Pheochomacytoma. I actually have hyper pots ( maybe very hyper LOL). It is important to rule out a pheo. The good news that if you have a tumor it is treatable. It was almost 10 years ago that I was misdiagnosed with this, but I'm guessing that you may be sent for a PET scan. The 24 hr urine test is less accurate than the plasma testing but I am proof that you can have a false positive (many times) for both. Hope you get some answers soon. I understand how awful you must feel!

I also am gluten free. It took me a long time to see how much it helps. I have been gluten free for over 2 years. I would encourage you to stick with the diet. It really it worth the trouble.

Mayo clinic put me on Kariva and had me take the active pills for three months in a row. I made out fine with this. Yaz gave me the worst flare of my life ( i didn't know I had pots). Make sure whatever you take does not affect potassium levels.

Ok .. I know three of you are hyper. I wonder if there is a difference? The only exercise I can do is recumbent or swimming. Still pay for it a little.

Just wondering do any of you have diagnosed (not suspected) hyper pots? My bp on betas has been about 160/110. Don't feel like exercising but I have been known to make myself anyway ;0 !