kitt

HyperPOTS, Thank you for this answer! Not sure I can get that done in town, (I've been to Mayo in Rochester and they are very precise in every thing the do.) Were you given special instruction about when and what to eat/not eat the day and night before?

I didn't know testing dopamine was part of the testing for Hyperadrenergic POTS? Any idea why?

My cardiologist also didn't order norapinephrine...Only for epinephrine, and metanephrine.

He also ordered a blood cortisol level.

Thanks again!

I'll call his nurse tomorrow and ask her to rewrite the order.

I'd be interesting in hearing how other people have had this testing done?

Thanks!

Thank you Issie, that helps.

I am scheduled to have blood tests for hyperadrenergic POTS. The order calls for epinephrine, and metanephrine. The lab order does not say the tests needs to be done standing, but I know it does.

Before I call the cardiologist to change the order and add 'standing', can anyone tell me if they had these blood tests and how they were done.

I know Thankful said she (on another thread that she had them done both standing and supine. Not sure if I need to have it done both ways and if so, is in done on two different trips to the lab?

If anyone has had these tests done, I'd be very appreciative on feedback!

Thank you...

I got DX'd at Mayo in AZ about 5 years ago. A Cardio doc - caught my POTS with a TTT. Then a few more visits got the EDS dx and the MCAS probable DX. Now there are more things with autoimmune and other issues that we are working on at the moment. I'm a DX work in progress. LOL! At least still getting answers as to WHY. Now just need to know the solution. Glad I could help earlier. Issie

Thank Issie for you post. Am curious though. Am wondering why MCAS dx is probable. Are you waiting to have more testing done the next time you're at Mayo? My experience with Mayo is that they do a lot! of blood work, and testing.

Just curious what Mayo's 'take' is on it.

Thanks!

I I also ended up getting MRSA/staph infection after experimenting with it so maybe all those Mast Cells protecting my body are actually doing me some good even thought they are making me feel like crap!!! -ashley

Ashley, you are the 2nd person on this thread that has mentioned having a MRSA infection. Why is this associated with MCA POTS?

Had never heard of anyone with POTS getting a MRSA infection, and now 2 people. How or why do you think you got it, and how does someone who gets infected with this strain of staph keep from infecting others?

How are you doing with your treatment for MRSA? Is it responding to anti-biotics?

Sorry...it will NOT paste. Here's the link. http://hyper.ahajournals.org/content/45/3/385/T2.expansion.html

Didn't paste. Here it is.

Orthostatic Symptoms—n (%) MCA+POTS MCA+OH n % n % Flushing 8 100 5 100 Palpitations 8 100 5 100 Lightheadedness 8 100 3 60 Chronic fatigue 7 88 3 60 Headache 5 63 2 40 Dizziness 5 63 4 80 Presyncope/syncope episodes 3 38 1 20 Shortness of breath 3 38 2 40 Confusion 3 38 Increase in blood pressure 3 38 Paresthesias 3 38 Gastrointestinal symptoms (nausea and vomiting) 3 38 4 80 Abdominal cramps and diarrhea 3 38 3 60 Blurred vision 2 25 Anxiety 2 25 1 20 Excessive diuresis 5 100 Orthostatic intolerance exacerbated by—n (%) After exercise 5 63 5 100 Prolonged standing 3 38 1 20 After meals 3 38 1 20 Premenstrual 2 25 1 20 Heat intolerance 2 25 5 100 Emotional stress 1 13 1 20 Sexual intercourse 1 13

Thanks Potsie, Issie, and Kelly,

Want to respond to your posts later. They're excellent!

Issie, am not surprised that you were dx. by Mayo. When they do give a dx., they are almost always correct. When they don't give a dx., it's because they're not willing to put themselves on the line unless they are 100% certain. Have experienced both situations at Mayo in MN, and Fl.

Potsie, did you say where you were dx? Forgive me if I missed it.

Great posts. Definitely have questions for both of you. Today's another day though, and I have another M.D. appt. Seems to never end. One appt. begets another, and on it goes.

I reread my post, and am mad at myself for making it sound so 'shocking' that my cardiologist is so brilliant. Jeez, this is what he has dedicated his life to. I've just read so many, many stories from people who haven't been able to get help with POTS, and I am so grateful to be able to get help in my town, although I do live in a big city. (Was initially dx with POTs out of town, but am not getting it narrowed down to a subtype, and getting treatment that will help. BB's have been a nightmare.)

I'll post questions to you both about your posts later, but for the moment though I found the form I mentioned that Dr. Grubb included in one of his writings. I'd promised to paste it for you.

I found this so helpful! As mentioned before, I printed it out, and notated which symptoms I have, and gave it to my cardiologist.

Orthostatic Symptoms—n (%) MCA+POTS MCA+OH n % n % Flushing 8 100 5 100 Palpitations 8 100 5 100 Lightheadedness 8 100 3 60 Chronic fatigue 7 88 3 60 Headache 5 63 2 40 Dizziness 5 63 4 80 Presyncope/syncope episodes 3 38 1 20 Shortness of breath 3 38 2 40 Confusion 3 38 Increase in blood pressure 3 38 Paresthesias 3 38 Gastrointestinal symptoms (nausea and vomiting) 3 38 4 80 Abdominal cramps and diarrhea 3 38 3 60 Blurred vision 2 25 Anxiety 2 25 1 20 Excessive diuresis 5 100 Orthostatic intolerance exacerbated by—n (%) After exercise 5 63 5 100 Prolonged standing 3 38 1 20 After meals 3 38 1 20 Premenstrual 2 25 1 20 Heat intolerance 2 25 5 100 Emotional stress 1 13 1 20 Sexual intercourse 1 13

There are a few who do have low bp's with HyperPOTS. Most of us DO NOT tolerate BB's - they will cause a degranulation of mast cells making that aspect of our illness worse. That alone will cause a drop in bp's when the mast cells release and then the problems compound. How do you know the bb's are not affecting you --if you have mast cells - it releases histamines and other chemicals and that in itself can make you feel awful. Unless you are in a flare and catch it one hour after the start of the flare - many won't have high Trypase levels. It's really hard to catch - cause most of us don't feel like running down to the hospital to get a blood draw or have a 24 hour urine - when we are so sick - we can barely think or sit up.

The H1 and H2's are very important and which kind you use. I didn't get benefit until I switched to Allegra and Pepcid (although I can only use 1/2 of pepcid or it makes my stomach hurt). But, when the GastroCrom was added that seems to be making a lot of difference. I'm also using the Nasal Crom a couple times a day and have just added the aspirin once a day. I'm also doing some diet changes and using some supplements. But, not until I added the GastroCrom did I notice the improvements.

As far as I know the things that supress the sympathetic system and are used with MCAS are clonidine and gafacine. I couldn't use the gafacine but, a very, very small amount of clonidine - helped with the surges. I had to come off it though - because I started having edema really bad and got tired of feeling tired all the time. I will reserve it for if those horrible surges start back. It leveled out my bp and hr. It was nice for awhile. With me, I have to cycle things.

Hope this helps a little.

Issie

Thank you Issie,

Great post! You gave a lot of good information. I'm going to be referring back to it soon I think.

I thought I would have to walk the cardiologist I'm seeing through this today, and it was amazing. He got it. I started by telling him about the flushing and the vomiting, the other mast cell diseases I have, and showed him the script for a tryptase test the immunologist had ordered which I hadn't done yet.

Just as you said Issie..Running down to the hospital for another blood test. I'm just trying to keep up with the M.D. appts I already have.

Anyway, he said "We need to do a epinephrine and metanephrine level test, a cortisol level, and a plasma histimine tryptsase test." ...And we may have to do a 24 hour urine test.

Was amazed and impressed. Don't think he's ever treated a case of MCA Pots before, but he sure knows what to do.

I found a form with percentages that Dr. Grubb published, and on it it had all the different symptoms of MCA hyper POTS. (I promise to find it and cut and paste..Too tired right now, but will do it.)

On the form with all the symptoms of MCA hyper POTS...Things like vomiting, headache, difficulty sleeping....It came to high BP (forget the medical term) and ONLY 38% of MCA hyper POTS patients have high BP! Thought that was odd. I checked off all the symptoms I had in a bright felt tip pen, and he locked on that and put it in my file.

So, you're right, low BP POTS patients can be in the group.

Strange...At his office today his nurse took my BP and said, "that can't be right"...Let me try the other arm. I laughed and said, 'right it down' It will be right. It was 145 over 70. Crazy...So guess mine swings like a monkey in a tree.

The GastroCrom is interesting. I haven't read that much about it being used.

Who did you find to diagnose you Issie, or did I miss that?

Be well...

I have severe chest/facial flushing, probable MCAD with elevated tryptase, methylhistamines, prostaglandins and IgE. Also dxd hyperpots with significantly elevated plasma cats. I am on the Mayo mast cell protocol AND beta blockers, which work well for me, so I guess I'm uber-weird.

Doc says the bbs are fine as long as I'm tolerating them. My hyper episodes were so severe, especially when I was ill, that propranolol is a med I won't give up unless I really, really must. I'm terrified of that.

I also have a completely wacky immune system that overresponds to friendly stuff and allows bad stuff to just waltz right in and make itself comfortable. I have an infection somewhere random about once a month and spike very high fevers that exacerbate my pots symptoms.

The more I read on here the more I think there is something else going on as I'm not fitting any "model."

Interesting Potsie, you have an interesting case. Hyper and able to take BB's. Did Mayo explain why? Can you tell me why you feel Propranolol is such a lifesaver for you? Why you wouldn't want to give it up...May I ask what dosage you take?

Do you take H1 and H2 blockers for the MCA aspect, or was it ever suggested?

I've been to Mayo In MN. and FL. many times, and it's hard to argue with them when they make a diagnosis. Just curious if they explained why this works for you with MCA POTS.

Glad you're getting some relief!

In addition to low BP, BB's make me even more EXHAUSTED. Has anyone else experienced this?

Thank you again Potsie for your feedback.

Be well..

Kitt, sorry to hear youve been feeling so lousy. I also have low BP. On BBs I have had my lowest recorded BPs- although Im normally pretty low. I have discontinued use of BBs due to side effects/fatigue low HR/possible hair loss. I have had two tilts- 1st one stopped at 5 mins second stopped at 9 mins. Since antihistamines are avail over the counter it wouldn't hurt to try- but usually for us we need more than the recommended OTC dose so that's why it's import to get tested and work w a doc who can recommend right dosage. As far as MCA- I think you are right on- think it is a much bigger player in POTS than at first glance.

I see the new Dx as good news because it helps to explain the widespread multi system dysfunction And it is something that is currently being studied.

Thank you Kelly, Am seeing my cardiologist today because of the extreme low BP on BB's. Attenolol 80/40...Metoprlol...70's/50's. So no more BB's I'm thinking! How low did your BP go on BB's? Anyone else have this experience?

I'm confused because most of the POTS MCA cases I've studied have high BP as a cofactor. I have low BP, but have flushing, vomiting, and other mast cell diseases. My immunologist wrote me a script for a tryptase test to check for mastocytosis. Has anyone else had a tryptase blood test done? (I haven't done it yet...)

Thank you for anyone who might be able to help by sharing their experiences with POTS, and low BP on BB's as well as flushing and vomiting.

Btw, I found a stat sheet done by Dr. Grubb that listed symptoms, and the percentage of POTS patients he's seen (many many thousands), and under vomiting, he only listed 8%. I have that list bookmarked, but am rushing to put together questions for my visit with the cardiologist today, and will post it later.

Best to All...

POTS does have a mast cell connection...not just in the hyper form. Most people aren't aware it.

A woman who is a doctor and disabled by POTS does a lot of videos and explains the mast cell connection. I prefer to read articles by Dr. Grubb and Dr. Raj, (who acknowledge it also), but this woman does a LOT of videos and explains things.

http://prettyill.com/videos/watch/my_mast_cell_week_how_was_yours

You might want to watch some of her videos on POTS.

Good luck with the 24 holter monitor. I just wore one for two weeks, and that was a pain. Don't think you'll mind it for 24 hours.

Am NOT giving medical advice, but anti-histimines could well impact your readings. All forms of POTS have a strong mast cell connection, and some forms far more than others. Obviously, anti-histimines inhibit mast cells from releasing histimines, so give that some thought.

Good luck!

.

Hi all,

I've been too unwell to post since I started this topic.

Am immunologist suggested I may have mastocytosis, and gave me a script for blood work to have it tested. Haven't done it yet, but need to immediately. Guess in the back of my mind I just wasn't prepared for another diagnosis.

A cardiologist who understands dysautonomia put me on another beta blocker. My first experience was with Atenolol, and my BP went to 80 over 40. Took a LONG break from bb's, and then tried Metaprolol and within a few days my BP dropped to 70+ over 50+.

Still waiting to hear back from the cardiologist. Feel like I should start H1 and H2 on my own, NOW. Even though MCA pots is associated with high BP, I've read it can occur with low BP. Anyone else have low BP with MCA?

Feeling awful. Worse part is before I started the new bb, I was at home and couldn't find paperwork I was looking for. I kept looking, and started sweating, and could feel my heart pounding. Even when my HR is 165, I don't really notice it. I finally laid down, and afterwards got up and ate something. Began vomiting within minutes. An hour later tried to eat something simple again...and the vomiting started again. This went on all night.

Now I have constant nausea, exhaustion and the lightheadedness.

I guess my questions are these...

Does anyone else have low blood pressure that goes too low on BB's? Basically can't tolerate BB's at all?

Anyone else have vomiting?

Facial flushing? Mine comes and goes.

Failed the TTT?

Diagnosed with POTS, but not responding well to meds?

Think the MCA aspect of POTS is perhaps a bigger issue than anyone yet realizes. MOST of us have not been to Vanderbilt, or to Dr. Grubb, so the statistics they're using are based on patients they've seen. Good information, but perhaps not representative of the true POTS population.

Thanks All!

Kitt

Hi all,

Has anyone experienced the flushing Dr. Grubb talks about here, and other symptoms of Hyperadrenergic POTS?

Is anyone here a patient of Dr. Grubb. This is a fascinating video.

Thank you for your suggestions. I do know about these doctors. (They are the only two known docs who specialize in treating dysautonomia in Florida.)

I had to go out of town to get diagnosed with POTS, and I'm hoping to find a doctor here in Orlando who can help manage symptoms. Am determined. It's a big town, and am hoping to find someone who does not 'advertise' that they know something about it.

Sigh...I know everyone wants that.

Thank you for your input!

I do shop at 'Whole Paycheck', and try and eat organically all the time. I've gotten to where I can taste the difference and even 'feel' the difference.

Didn't start all at once, started gradually and over a period of several years...I'm a convert.

Haven't had sugar in years...very little dairy and only eat meat on a very occasional basis.

Watched the documentary 'Forks over Knives' on Netfiix. That is an eye-opener!

I watch healthy people eat tons of junk and they remain amazingly healthy, so to each his own. This works for me, and I would encourage anyone with health issues to give it a try, but don't judge people based on what they choose to eat or not eat!

Hello all,

Am new to this forum, and it's been a wealth of information. Thank you!

Was diagnosed with POTS in 2011 and am looking for a doctor in central Florida. Is anyone else in the Orlando area, and what doctor do you see?

So frustrating trying to find a single doctor who knows about this condition!

Hugs,

Kitt