Newbie here - if very high bp unchangable with position, does this rule out dysautonomia?

[Weary]

Hi. At wits end and beyond desperate. Have so many ysmptoms and so many things happened over the years I don't know where to begin. Dysautomia, mast cell activation syndrome, hyperandrenergic POTS, baro-reflex failure, disruptions to HPA axis,  all seem to have overlaps with my symptoms, but I find these hard to tease apart (and forget about getting help from the many cardios, neuros, rheums, etc that I've seen).

Question then starting with the high blood pressure that appears caused by excess symptathetic nervous system activation. So my blood metenephrines is 1.5 times normal, but its not a pheo. I feel overstimulated constantly, and have to avoid as much external stimulation as possible to not bring it over the edge and go in crisis. It has raised my bp considerably and with excaberations my bp last week reached 220/120 while in a docs office. Resting value ranges over course of day but not infrequently 180/100.

Quick thing on heart rate. its very complicated. I do tend to get tachycardia (100-140) when I get up, and settles when idon't move. in fact, oddly, my hr now has dropped at rest to about 64 (my resting pre illness was about 82-89). So that has made me in past think maybe hyperandrenergic POTS - but = my bp does not change all that much, if at all, when I get up. Lying down or standing up, and it's super high. I do though have a negative correlation between hr and bp., so later in the day, like afternoon, my heart rate is higher and my bp is (relatively) lower- and I feel relatively beter as well.

I have alot of symptoms that are consistent with MCAS - dermatographia, those elevated metenphrines, chemical sensitivities, now many foods have become intolerant (the chemicals set off an autoimmune disease) , swellings on my face, itching for no reason, a huge intolerance to fermented/age foods (these can set off a hypertensive crisis), chronic diarrhea, elevated liver enzymes, tons of weight loss (even w/o diarrhea), mouth sores, heat sensitivity,  extreme fatigue, excercis intolerancethere are others.

but because that high bp is largely stable with position changes, does this rule out dysautonmia? how can I find out more on baro reflex failure? another tidbit is things really started taking off after an apparent herpatic infection on chest and head.

But there is just too much to tell and I can't explain it all. in fact, there is so much, that at this point it is too excessive to even tell doctors. and dspite keeping medical logs of everything and trying to keep lists of symypoms, it has become so complex I can't even keep track of it all.

so will stick with that one question. Am I barking up the wrong tree for these excessive bps that do not change much with position changes? does this rule out auto dysfunction? should I be looking for some other cause of inappropriate symptathetic nervous system activation?

any help appreciated. I'm really out of steam.

[yogini]

If your HR goes up at least 30 bpm and stays up when you stand you have POTS, regardless of what your BP does.  Some people have high BP.  

[Scout]

Hi there Weary, 

I am so sorry to hear what you are going through. 

I also have very high diastolic readings often, sometimes 100 and above. 

You could certainly have hyper-POTS. I would not rule that out by any means. 

Have you had your RAAS system checked? 

Are there any meds you have tried as of yet? 

[haugr]

No, that doesn't rule out dysautonomia.  Dysautonomia is just an umbrella term to describe a dysfunction of the autonomic nervous system, which is a system that is responsible for a LOT of what happens with your body.

My opinion is that you are barking up the right tree.  Your symptoms seem to be consistent with what i know about MCAS.

[Weary]

ok, thanks folks. May take me a while to respond - tired, sick, etc.

That makes sense that dysautomia should be an umbrella term and should not require that only innapropariate responses to gravity be the sole criterion. Many docs, to the extent they buy into into dysautonomia at all, are familiar only with orthostatic bp changes - sometimes heart changes.

I know the text book says 30bmp on arising, but in life its more complicated. If i change from side to side in bed and heart speeds up, does that "count". Or my heart might go up 25 beatsa minute with standing. or it may not go up at all with standing, but then soars when i start to walk, or soars when i brush my hair.

in terms of hyperandrenergic pots, one thing i think may argue against it is I have gotten big "spells"/attacks while lying down. they don't reach quite as much a peak as when i'm stupid enough to get up when i have an especially bad "maybe i should call the ER" flare, but nonetless, lying down does not always make me normal (unless of course i'm in the hospital. Then, I like down, hr goes back to 100 and they say i'm fine - until of course i get up...then they had me rush back to bed and grabbed the portable ekg machine, but by then i had by lying down w/o moving and was fine again....

lately though, just as symptomatic lying down.

so so many symptoms fit with MCAS the more i read. my worry now though is that my vessels (and nerves) are affected and wil get a storke or heart attack before I can find a treatment that works for me. I thikn i spin the roulette wheel every time my pressure goes to 220/110, not to mention the ongoing damage that is done with the overstimulation i have 24/7.

i was looking through some old posts on here and so much makes sense.

what is RAAS?

I get so sick with meds that am so reluctant to try things. I also don't do well swallowing pills, so i crush things and mix with food/water etc. - and whether its that or just the drug itself, i can easily set off GI symptoms inclusing dysphagia and bad reflux and it lasts weeks. could not eg tolerate valtrex or acylovir - tried 4 times and destroyed my esohpagus in process (I even tried intranasal delivery, so it wasn't jsut that it was going down my gut.). i had a similar problem on tyring such a small dose of lauricidin. But that's all just for the past antivirals i tried.

intolerance of meds i hear is common in MCAS. I tried a bit of Pepcid for an H2 blocker. I could not try tagamet becasue apparently it further depletes MAO-A and juding from my symtpoms of tyramineintolrance as well as some blood markers (biogenic amines) and pepcid is really the only safe one if you have that issue. But the only one that didn't have stuff i was allergic to was the one you had to swallow - they don't have a chewable. so crushed it - just a small amount - and gave me bad stomach/chest (esoohagus) pains; i didn't notice besides reducing acid later in the day, it also reduced my itching which i thought was interesting.

finding an acceptable h1 blocker is tricky too. i have always reacted badly to benadyrl, so that's out and in looing up types i can see why i react badly to many which are basically amines. But i've always done well with piperizines (cyclizine for vertigo before they discontinued it), so serched for piperizine. got a doc to write a script for hydroxiine which is a first generation h1 blocker in the piperizine family. Took the most amzainggly small dose and 12 hours later got sleepy, which felt nice. But felt like it increased my heart palpitations. did read that H1 tends to decrease bp, so pehraps blocking H1 might increase my bp? I forget now the name of the second generation piperizine h1 blocker - so wanted to try that, but the d*** manufacturer discontinued the chewable. they kept the "quick melt" version and the liquid version, but both of these have ingredients I can't take! Tried bying some generic off amazon, but smells so strongly of some kind of aritficial cherry flavoring, i figure will make me sick, so have not tried.

ok, so that's some things i've tried.

intersted to hear from others who think mcas is the cause of their dysautonmia.

and for the person whose distolic readings also go up - have you found anything that helps with it?

and...anyone else intolerant of tyramine containing foods?

 

 

 

 

[haugr]

You REALLY need a way quickly to deal with those 220/110 spikes.  Those could be doing real damage.  My doc had me pop clonidine when I went into hypertensive crisises.  It was a total life saver for me.  Clonidine is a quick acting and a relatively short lived med that works by suppressing the release of norepinephrine, but it only helps if your blood pressure spikes are caused by your brain activating the sympathetic nervous system.

The RAAS is the system in your body that regulates blood volume.  Basically, there is a known condition that can cause hypovolemia from having a dysfunctional raas, leading to hyper pots. 

POTS is specifically referring to being symptomatic while upright, but remember that POTS is essentially just a symptom of an underlying problem.  It is completely within the realm of possibility that your underlying condition could also be causing you to have attacks while suppine.  I can confirm from experience that this is true of a raas dysfunction.  The smallest amount of anxiety, even while suppine, would cause me to enter hypertensive crisis states when combined with the high levels of angiotensin ii from the raas dysfunction.

I am under the impression that mcas can be diagnosed by a urine test while symptomatic.  At least my doc had me collect urine while I was symptomatic when he was trying to diagnose me.

[Maggy]

I also have hyper pots and my bp spikes to 230/120, but I also get times when it drops to 80/60 so I'm not able to take any meds to lower bp. Have you found any meds that help control the spikes in bp ?

[DizzyPopcorn]

On 5/4/2018 at 7:59 PM, yogini said:

If your HR goes up at least 30 bpm and stays up when you stand you have POTS, regardless of what your BP does.  Some people have high BP.  

I keep seeing this mentionned everywhere and no one has a consensus on this criteria. 

My heart rate goes up 30 bpms when i stand but goes back down to where it was (or +10). Some says its pots, others do not. I'm currently getting tested for multiple causes and its just... A bit frustrating that there isn't a clear cut line that defines whether you have pots or not. I understand that it might not be possible due to the nature of this syndrome, but its still annoying.

[MomtoGiuliana]

@whoami--my thought is that if you are experiencing a change in hr 30 bpm or more (or over 120 bpm) when you stand up AND you have other symptoms, a specialist would consider treating you.  Even if the hr is not being sustained that high.  Assume you have seen a specialist?  GPs may not be well-versed in dysautonomia.  I still had a dr (neurologist)  tell me  this weekend that I don't have POTS bc my bp does not change when I stand only my heart rate changes.  It's best if you can be evaluated by a specialist in dysautonomia.

 

[DizzyPopcorn]

3 minutes ago, MomtoGiuliana said:

@whoami--my thought is that if you are experiencing a change in hr 30 bpm or more (or over 120 bpm) when you stand up AND you have other symptoms, a specialist would consider treating you.  Even if the hr is not being sustained that high.  Assume you have seen a specialist?  GPs may not be well-versed in dysautonomia.  I still had a dr (neurologist)  tell me  this weekend that I don't have POTS bc my bp does not change when I stand only my heart rate changes.  It's best if you can be evaluated by a specialist in dysautonomia.

 

I had symptoms upon standing after discontinuation of my anti-depressant (citalopram) for 6 months (as well as a change in hr of 30 beats + -). However, upon starting treatment back on another antidepressant (lexapro / cipralex) of 15mg, most of my symptoms are completly gone. I still notice the 30 bpm change, however, and my resting heart rate is higher in the morning. I also have increased blood presure upon standing and also comes down after the 20 ish seconds of "ajustment" that my body does. Ex : 120 sys laying, 140 standing, and then settles at 130 standing.

I am not seeing a specialist right now as i've just changed GP (old one kept saying it was anxiety and thus didn't want to help or let me see a specialist). The new GP is definitely on my side and is helping me. I had a multitude of tests prescribed and im currently awaiting for an appointment with a specialist / nuclear medecine specialist

its disheartening that the neuro you saw is trying to undermine your situation / symptoms. 

[MomtoGiuliana]

Weary--So sorry for your symptoms and difficulty getting resolution of them. 

There have been a lot of past discussions about MCAS.  You could do a search of the forum.  It sounds like you may not have a specialist helping to figure all of this out?

We maintain a list of specialists here:

https://www.dinet.org/physicians/

(whoami--I will send you a PM rather than respond in this thread).

 

[yogini]

22 hours ago, whoami said:

I keep seeing this mentionned everywhere and no one has a consensus on this criteria. 

My heart rate goes up 30 bpms when i stand but goes back down to where it was (or +10). Some says its pots, others do not. I'm currently getting tested for multiple causes and its just... A bit frustrating that there isn't a clear cut line that defines whether you have pots or not. I understand that it might not be possible due to the nature of this syndrome, but its still annoying.

Users on the forum might be confused but the medical definition of POTS is agreed by doctors.  It is a sustained 30+ increase, regardless of what happens to your BP.   Everyone's heart rate goes up a little when they stand but for POTS the difference is that it stays up.  If your HR goes back down then that is does not seem to meet the definition.  You can read more here.  Dysautonomia International is another good site.

 

 

Edited May 10, 2018 by yogini

[DizzyPopcorn]

43 minutes ago, yogini said:

Users on the forum might be confused but the medical definition of POTS is agreed by doctors.  It is a sustained 30+ increase, regardless of what happens to your BP.   Everyone's heart rate goes up a little when they stand but for POTS the difference is that it stays up.  If your HR goes back down then that is does not seem to meet the definition.  You can read more here.  Dysautonomia International is another good site.

 

 

Thank you for the read, appreciated.

I guess i will have to wait for more tests then. I don't know what i have.

At the very least, i have a good GP now. So i can finally move forward to at least either getting a diagnosis or feeling better.

I will keep you all updated. I agree that i may not have pots, because aside of the surge i get when standing and occasional lightheaded feeling, i don't really have symptoms . I can stand on my feet for 1h if i want, and my heart rate will not budge. Only when i stand from a different position etc. 2 weeks ago i went mountain hiking for 3hrs. Had to take breaks but i felt fine.

The most difficult task for me, is when i stand from the ground and not my bed. If i lay flat on my belly on the ground and then push myself quickly to a standing position, my heart rate will go from 70-80 laying to near 110 bpm standing for 20 secs, and then it goes down to 80-90 (+10). Blood pressure also increase.

Yes i am overweight (+40 pounds my healthy weight, which is 190 pounds), but i've seen people far worse than me and they don't have a problem at all (hr / blood pressure wise when standing).

My father, who's 57 years old, increase from 60 to 65 standing and then goes down back to 60. So if i compare myself to him, clearly i'm abnormal, whatever is my problem.

 

[yogini]

41 minutes ago, whoami said:

 

The most difficult task for me, is when i stand from the ground and not my bed. If i lay flat on my belly on the ground and then push myself quickly to a standing position, my heart rate will go from 70-80 laying to near 110 bpm standing for 20 secs, and then it goes down to 80-90 (+10). Blood pressure also increase.


 

In normal heathy people, the heart rate increases exactly how you describe here.   I would not be worried about this as a problem.  

[DizzyPopcorn]

1 minute ago, yogini said:

In normal heathy people, the heart rate increases exactly how you describe here.   I would not be worried about this as a problem.  

I think i wouldn't worry about those if i wasn't having symptoms for 1 year and a half, sadly.

With my current anti-depressant, its a lot better and i feel less adrelanine surges. But i still have a pressure in my head when im upside down / bending. Also, when i stand quickly, my heart pound.  I never felt that way before, ever. 

When i discontinued my previous anti-depressant (citalopram) 9 months ago, standing was a huge rush of adrelanine and felt like the gravity was x3-4 that of the normal value. But not always and it happened more in the morning. Now im on lexapro.

What's funny is that i started taking an anti-depressant for my health anxiety problems. Could those possibly have "destroyed" my sympathetic nervous system and throw everything into disarray?
 

Im getting confused haha. Trying to put the pieces together, but its hard. I've been trying for a long time. But not having pots would be a huge plus (and no symptoms, of course).

[yogini]

2 minutes ago, whoami said:

I think i wouldn't worry about those if i wasn't having symptoms for 1 year and a half, sadly.

With my current anti-depressant, its a lot better and i feel less adrelanine surges. But i still have a pressure in my head when im upside down / bending. Also, when i stand quickly, my heart pound.  I never felt that way before, ever. 

When i discontinued my previous anti-depressant (citalopram) 9 months ago, standing was a huge rush of adrelanine and felt like the gravity was x3-4 that of the normal value. But not always and it happened more in the morning. Now im on lexapro.

What's funny is that i started taking an anti-depressant for my health anxiety problems. Could those possibly have "destroyed" my sympathetic nervous system and throw everything into disarray?
 

Im getting confused haha. Trying to put the pieces together, but its hard. I've been trying for a long time. But not having pots would be a huge plus (and no symptoms, of course).

I just just meant I would not be worried about that particular scenario, which seems to be a totally normal HR response. Totally agree it is important to figure out what is causing your symptoms.  I hope you feel better soon.

[DizzyPopcorn]

Just now, yogini said:

I just just meant I would not be worried about that particular scenario, which seems to be a totally normal HR response. Totally agree it is important to figure out what is causing your symptoms.  I hope you feel better soon.

Thank you, i appreciate your concerns :). Yes, i hope too!

[Weary]

Hi everyone. I'm the OP and thanks for all the comments and stories.

On the mast cell, yes, i had seen other threads on this forum which ws one of the reasons I wanted to post here. Some were from 2011 though and the posters appear to have moved on (hopefully in a good way!).

this morning my heart rate ws 60 lying down, and was 106 on standing. Whether it went back to normal on standing is hard to figure; was pretty labile. Note that the 60 resting i view as another symptom of dysautonomia since before this all started my resting heart rate was about 88, sometimes down to 82.

does anyone else get a "hot flasth" or chills before heart starts to pound?

another thing that bugs me is that I have palpiations near all the time, worse early am and pm, and the EKG now always says "non specific T wave abnormality", but that's not a class docs care about, so it gets ignored. yet i think it corrleates with some of the unpleaseant feelings in chest.

I also feel like i have revved up feelings all the time - BUT oddly, i do so even when my heart rate is at 62, so that's not adreneline (though at time i do get "spells" that seem to be adreneline fueled with tachycardia and can last days and days) and I wonder what else is producing those feelings. On urine testing, I do have an excess of dopamine (and low serotonon) and beside smy tyramine intolerance, i also am intolerant of free gluimates (even glutamine), so perhaps  "excitotoxin" at my does, but don't kow. Maybe high dopamine means body ready to produce excess adreneline from it at any stimulus. Weird though because I can't even have  a simple lunch with someone - it gets me too revved up! Awful way to live. 

Think i mentioned I also get these yawning jags. I tend to feel better after them, though these days never get back to completly normal. I think that can go along with autodysfunction.

there's still one more new bit of data wanted to mention; i'll end with it, so let me bring up anything else I wanted to discuss first. Have not seen a specialist in autonomic dysfunction. I have been to a zillion other docs and am so d*** doctored out. been two 2 neurologists, an EP cardiologist, a regular cardiologist, i also have a couple of rheumatolgists. Am getting a new GP, so may bring it all up again.

Still don't understand a very weird symptom i get - which is electric type sensations in my head and/or chest every time I fall asleep for the first 2 or 3 hours a night. so that startles me up every 5 minutes, and also produces dreadful sensations in my head an chest. I think my dysautomia symptoms get worse after that the next day. So am curious about if anyone else gets that.

And as before, curious if anyone else has an intolerance of tyramine containing foods.

but even if its that - dysautomia  (whether from mast cell, or autoimmune , or sleep disorder, recurrent herpes virus) , then seems to be a downer of news cause doesn't seem like there is much that can be done - just attempts to control the dangerous symptoms, but i do so badly on big pharma medicine.

Anyone ever evaluate vagus nerve?

Anyone ever had  IVIG or sub q IG for dysautonomia?

I'm still reluctant to try the beta blockers for bp. Since my heart is already down to 60, the beta blocker will make it lower. Plus my mother did very badly on a pure beta blocker- made her act drunk and not in a good way - more in crazed amanic way. Plus if i do have a mast cell disorder, beta blockers can basically kill you if you have an allergic reaction whilst on them. maybe i should try treating it as hyperandgrenergic pots, even if it isn't exactly that.

Anyone have cyst on pineal gland? (I don't think i do unless missed by an MRI a few years ago, but i hear that too produces strange symtpoms and the rate amongst those with POTS is higher than general population; Its one of the listed comorbid conditions.

ok, so here was the one bit of info. Been wanting to do heart rate variability testing for a while. my EP cardio does not offer it. Turns out there are apps that do and they apparently are pretty d*** good. Anywya, ran it a few times; got all the measurements they gave and interestingly, said that my autonomic nervous system was not able to control my cardiovascular system and that alternativ e hormone and another older system was attempting to do so. Certainly fit with my symptoms, even though i never gave them any symptoms. Also unexpectedly, it says that my sympathetic and parasympathetic are in balance and that BOTH were not working properly. That actually makes a lot of sesne- i had been expecting it to say my sympathetic was in overdrive and parasymphathetic not working, but fact they are both not working does fit in bettter with my synptoms - such as the low resting heart rate now, and the fact when i do the breathing excersises to engage the parasympathetic system, I get worse and heart pounds harder. Also suggest that beta blocker might not be a great idea, since its not really an overactive symptathetic system like i first thought (despite the elevated metenephrines in blood- when we looked at urine, that was LOW. )' alll seems like dysregulation rather than a steady elevation of one thing or another. (and of cours, lost ability to regulate blood pressure; although mine seems high all the time, theres a bigger change in readings than i think people usually get - its at least 35 points between the hours of 8am an 3pm in systolic and maybe 15 in diastolic.

NO one cares about the heart rate variability data though, even though am getting reports on it that i'm in "breakdown" mode and health is in danger, or much else for that matter.

Anyone else done heart rate variability (HRV) testing? Anyone found any doctor that uses this measure?

ok, have to decide if will see the new gp sooner rather than later, or try to go to cardio again and ask for another 24 hour moniter (since symptoms have changed some since 6 months ago when done before)  or search for a dysautonomia doctor, or try to move up my allergy appt (for mast cell ) - or just say h*** with it all...Staying alive shouldn't be this hard and i've been at this a very long time following so many d*** leads.

[Pistol]

WOW - slow down!!! --- Many of you symptoms are shared by - probably many - people on this forum. I want to especially point out the Yawning episodes: I get the yawning and also tremors when I have a triggered episode of the hyper-adrenergic type, I was told it is due to the body attempting to increase oxygen intake. Most likely that is due to the sympathetic system causing vasoconstriction. --- Try to tune in to your body, rather than focusing on your heartrate or palpitations or BP.  Those may need to  be controlled by medications if we cannot control them with other maneuvers. And if you do not feel that your current docs are helping with your symptoms you may want to see an autonomic specialist. But be aware - there is currently no cure for dysautonomia, so we need to be aware of what is helping and what is making us worse. IT WILL BE OK!!!!

[ks42]

I am tyramine intolerant also, though the tyramine intolerance didn't start until this past January, which is 4 years after I was diagnosed with dysautonomia. I have the full story of my illness on my profile page.

[Pistol]

I too have T-wave abnormalities, inverted T-wave in several leads. Had this for as long as I can remember. They did all kind of tests, including an echo and heart cath in January - everything is normal. They cannot explain why I have this but it does not appear serious as long as it stays the same in every EKG. I have prinz metal angina ( chest pains caused by spasms in the coronary arteries ) and Raynaud syndrome, both same mechanism and caused by dysautonomia. Also - in the beginning of POTS I had TONS of PVC's, really severe. It took many many trials of different meds before we found the ones that worked. And all of them I started with  the lowest dose, sometimes half of one and then increased slowly. If they did not work or made things worse we would switch to another one. Beta blockers especially are so very different for everybody, it takes a long time to fine-tune medications for POTS. Please do not give up - it is frustrating for both us and the docs as well. Even my autonomic specialist ( best one in the nation ) had to try one after the other until we got good results. 

[ks42]

On 5/24/2018 at 3:25 AM, Pistol said:

It took many many trials of different meds before we found the ones that worked. And all of them I started with  the lowest dose, sometimes half of one and then increased slowly. If they did not work or made things worse we would switch to another one. Beta blockers especially are so very different for everybody, it takes a long time to fine-tune medications for POTS. Please do not give up - it is frustrating for both us and the docs as well. Even my autonomic specialist ( best one in the nation ) had to try one after the other until we got good results. 

Yep! I absolutely agree. Especially beta blockers. There are so many and they all work slightly differently. In the beginning of my illness, Metoprolol sent me to the ER, but later I found I could tolerate atenolol. It was so powerful, though, I had to compound it down to only 3mg, but that worked for awhile! Nadolol worked well too without lowering my resting HR too much, but it gave me breathing issues so I had to stop. After that, I found that I could tolerate Metoprolol 12.5mg, the short acting one, for occasional bouts of tachycardia without any issues or side effects. I'm back to not being able to tolerate betas now, but I'll be willing to try them again in the future for sure, as my tolerance level seems to keep changing.

[Weary]

Wow. I have much to respond to on these great comments. takes me a while cause sick etc. But quickly ks42 you sound so much like me and vice versa my jaw was dropping. More as soon as i can. need to read thru all carefully and so on. thanks.

[Weary]

Hi Pistol and Ks42 -

let me first start by trying to address ks42's post. I won't remember them all, so what will try to do is to paste in her message here and respond point by point:

I am tyramine intolerant also, though the tyramine intolerance didn't start until this past January, which is 4 years after I was diagnosed with dysautonomia. You can go to my profile page to read my story, so I won't re-post it here. But I'll add that I've always gotten hot flushes and prickly sensation right before an "attack" of high BP and racing heart. I do also have elevated liver enzymes, dermatographia, itching, random hives, food and chemical intolerances, weight loss, mouth sores, exercise intolerance, and a lot more. I'm constantly on edge with my adrenaline issues - I have to stay calm, in a quiet environment, otherwise my body gets overstimulated easily and I go into crisis.

II have every single item on your list including ones that I didn't mention in my post. will read your story. It seems to me signficant that our symptoms overlap to that extent.

I too have non-specific T-wave abnormality and tons of palpitations. My heart rate also started getting lower in between attacks of tachycardia, to the point where sometimes I am running in the 50's when resting, which isn't fun because 70's was my normal before I got sick. 

Because of the T-wave abnormalities and palpitations, I've had a nuclear stress test, yearly echocardiograms, two 48 hour holters, a 7 day holter,  and a 30 day event monitor. All normal. They believe the abnormalities are due to excessive sympathetic tone.

Interestingly, my docs refuse to pay attention to the non specific t wave abnormalities. I did wear a 24 hour moniter - and DID have an attack during the night when wearing it. Since i get more than one type attack (I think), it didn't fully capture everything. What it showed was during peak of attack, had something like 400 pvcs in the hour interval, and sinus tachycardia of about 125 bmp. There was not enough trisomy for them to be interested. Then when i got up after almost no sleep and was dizzy, i had one 60 second run of atrial tachycardia (a type of supraventricular tachycardia) and my heart beat was 143 bpm. My  heart rate ranged from 63-143 in the 24 hour period, and all i did during that time was rest. No one was interested in the lability and said it was a good sign and that damaged hearts don't have such labile readings. The atrial tachy meant I could legitametly see an EP cardio, and since this guy reported to be really excellent, I went. He of course wants to see a 30 day recording, because that's what they do, and i scoffed at his agressive suggestion that they implant it! Anyway,  have not done it. On the non specific t wave, the PA who worked with him checked all my EKGs i brought in as well as the one they took that day and said it was the same in all 3. didn't know but thought maybe was a result of the chronically high bp. But what's worse, they didn't really care about it. The ep cardio did agree I likely had an autonomic dysfunction but he treated neither that nor the very high bp. And that was that...(I think the one arhytmia was completly unrelated to what i have and just a bonus - its not uncommon and i think have genetic predisposition to that).

I saw two mast cell specialists and it was determined I actually don't have mast cell - tested negative four times, even when I was super symptomatic. We also tried me on every mast cell protocol in the book, just to be sure, but they didn't help (I believe I too am sensitive to amines, but even non-amine drugs didn't work). 

Have your read -is it Affins popular book on it? Worth a read. I know mast cell activation disorder can be very hard to diagnose and most of time trypsin is negative and even often the urine markers they look for, especially given the handling requiements. I have not yet been to any mast cell specialist. at the moment , alli have is an allergy appt and I coudln't even get in til September! so you can see the frustrations.

Question: if its not mast cell over reactivity, what do you make of the dermographia?

Since i've had that since age 10 and was healthy (though some GI symptoms dating back to infancy and arguably related), i was thinking that perhaps i had the very common mast cell activation syndrome, and then i know exactly what happened in terms of chemical exposure that put it over the top and sent me on the downward spiral .  I tried on my own the non amine H1 blockers - and did not helkp. in fact, the HI blockers (meclizine which i took before for vertigo, and hydroxizine which i asked for since i thought i did well with piperizines), makes my heart pound harder. In fact, that's how i ened up in the ER in November and made up some reason why I took the meclizine (I thought it would calm things down actually since in past made me sleepy. did make me sleepy- but made the heart worse and that night during the night needed ambulance)

have your basophils ever been elevated? I caught them up after the dental work got me sick, but everyone ignored. would be curious to know at some point if you have any allergies to sulfonamide and some other things.

Anyway, I got worse this January. My BP got higher and the attacks of flushing, tachycardia, high BP, and adrenaline got more frequent and that's when I developed the tyramine intolerance.

i wonder if you had the tyramine intolerance before, but now your threshold has changed so more things putting you over the edge in a way that's noticible. I wonder if ive been sensitive to tyarmines for so long (granted by the way i'm not sure evryone would have figured it out and realized i was sensitive- docs wanted to give me clonidine instead), just what that means about my excitotory state and/or excitotoxins for a very long time.

WE both have the elevated liver enzymes. I don't think this is a coincidence. What has been your thinking on them as it relates to all the possiblities we are discussing? Occurred as my earliest lasting symptom. (I also measure very high on oxidative stresss- not surprising).

ok, i'm spent, so will continue on the rest of your very important stuff when i can, hopefully this weekend- so please don't go anywhere yet...

thanks much folks!

 

 

[ks42]

On 5/25/2018 at 4:33 PM, Weary said:

i wonder if you had the tyramine intolerance before, but now your threshold has changed so more things putting you over the edge in a way that's noticible. 

I have no idea. I'm sure it's possible. I can tell you, though, that when I first got sick, I changed my diet and didn't realize that what I changed it to was SUPER tyramine heavy. I was eating daily kefir, avocados, bananas, nuts, other fermented foods, cheeses, etc. I felt a huge improvement in my symptoms on that diet for several years. It's definitely possible I've always been tyramine intolerant, but given my history, my doctors and I both think it's a relatively new development. The theory is that if I have a pheo or para, this year it grew and/or started secreting again, causing the tyramine intolerance. Otherwise, if it's not that, I don't think we have a clue what triggered it.