Jargon Challenged New Person

[Rachel Cox]

Hello dear Dinet people,

I am deeply impressed with your collective intelligence!

When I was first diagnosed with POTS three years ago, I made a little tentative toe-dip into the world of dinet. I didn't stay long back then. I was more than a little overwhelmed by the easy way everyone seemed to toss tricky medical terminology around. You all know so much about so many complex things! I didn't want to have POTS and I figured I mustn't ...simply because I couldn't understand it, so I thought if I ignored it and left the forum it might go away. Ha.

I am back. Things have progressed with my delightful body but this delightful brain is still not progressing into an easy understand of all things dysautonomia.

Since I was last here there seems to be more chat about auto immune stuff and something called mast cells. Some people are into vitamin D and lots of you have Sjrogen's. These things are all new concepts to me. And I still don't understand how it works together.

I have learned a couple of new (and useful) terms for the joys my tummy brings me every time I eat. Gastroparesis and intestinal dysmotility. And the lovely urinary retention. So I have my head around these things...

but OH MY! You all know so MUCH about different tests and what they mean, all the jargon. Blows my little foggy brain off into the wild blue yonder!

Please can you help me, medico-moguls of the potsy/dysautomic planet we call home?

I need a kind of a 'cheat sheet' explanation of the new things above. Preferably in normal English.

And I want to know if there is anyone like me? Pretty please?

I am in New Zealand. It's beautiful here(!) but very isolated from any expertise in autonomic problems.

I had asystole on the TTT and they put in a rate-drop pacemaker to stop my heart from stopping and prevent me from fainting. No one else here seems to have this...?

Apart from the dizzy/ foggy/ headachey/ exhausted stuff, I have autonomic dysfunction of the stomach, bowel and bladder (not pretty stuff and I won't give you the ugly details!). I have problems with my eyes (focal spasm and a permanent flickery disturbance in the vision on the right). My throat hurts every night and feels dry as a bone, even though I am drinking water like a fish. After a recent stay in hospital for the tummy stupidities, I saw a neurologist who said I don't have POTS but 'pandysautonomia'. I have a lovely general physician who is trying to find some things out for me...

So although I would like to run away again, I think you guys might be just the sort of people who can help me to understand what is going on with me! Are any of you like this? Can any of you volunteer to be a guide?

From the impatient patient,

Rachel

[jangle]

Hello dear Dinet people,

I am deeply impressed with your collective intelligence!

When I was first diagnosed with POTS three years ago, I made a little tentative toe-dip into the world of dinet. I didn't stay long back then. I was more than a little overwhelmed by the easy way everyone seemed to toss tricky medical terminology around. You all know so much about so many complex things! I didn't want to have POTS and I figured I mustn't ...simply because I couldn't understand it, so I thought if I ignored it and left the forum it might go away. Ha.

I am back. Things have progressed with my delightful body but this delightful brain is still not progressing into an easy understand of all things dysautonomia.

Since I was last here there seems to be more chat about auto immune stuff and something called mast cells. Some people are into vitamin D and lots of you have Sjrogen's. These things are all new concepts to me. And I still don't understand how it works together.

I have learned a couple of new (and useful) terms for the joys my tummy brings me every time I eat. Gastroparesis and intestinal dysmotility. And the lovely urinary retention. So I have my head around these things...

but OH MY! You all know so MUCH about different tests and what they mean, all the jargon. Blows my little foggy brain off into the wild blue yonder!

Please can you help me, medico-moguls of the potsy/dysautomic planet we call home?

I need a kind of a 'cheat sheet' explanation of the new things above. Preferably in normal English.

And I want to know if there is anyone like me? Pretty please?

I am in New Zealand. It's beautiful here(!) but very isolated from any expertise in autonomic problems.

I had asystole on the TTT and they put in a rate-drop pacemaker to stop my heart from stopping and prevent me from fainting. No one else here seems to have this...?

Apart from the dizzy/ foggy/ headachey/ exhausted stuff, I have autonomic dysfunction of the stomach, bowel and bladder (not pretty stuff and I won't give you the ugly details!). I have problems with my eyes (focal spasm and a permanent flickery disturbance in the vision on the right). My throat hurts every night and feels dry as a bone, even though I am drinking water like a fish. After a recent stay in hospital for the tummy stupidities, I saw a neurologist who said I don't have POTS but 'pandysautonomia'. I have a lovely general physician who is trying to find some things out for me...

So although I would like to run away again, I think you guys might be just the sort of people who can help me to understand what is going on with me! Are any of you like this? Can any of you volunteer to be a guide?

From the impatient patient,

Rachel

The symptoms you reported are consistent with other POTS sufferer's experiences including my own. For me, the nausea and vomiting subsided some years ago, but I still have the headaches and presyncope.

To summarize, there are some fundamental theories as to what causes POTS.

Dr. Stewart advanced the idea of high levels of angiotensin ii on the assumption that an overactive sympathetic nervous system tends to produce high levels of angiotensin ii. However, the flaw with this theory is that only a few of his POTS patients exhibited measurably high levels of angiotensin ii, and losartan (which is an angiotensin ii blocker) does not seem to be a gold standard for treating POTS.

Dr. Levine advanced the idea that a small heart size is responsible for producing POTS. The flaw with this theory is that POTS seems to strike later in life, and is not typically seen present at birth or earliest childhood years. Additionally many people with POTS have a normal stroke volume and heart size as measured by other studies.

Dr. Bayles advanced the idea that reduced levels of norepinephrine transporter protein is responsible for POTS. This has the most evidence as studies have shown that blocking NET (norepinephrine transporter) in healthy controls produces POTS in them (That is, they get the rise in heart rate upon standing.) But he did not advance an idea as to what causes this reduced NET. He did rule out mutations as well as methylation. He suggested perhaps a cytokine/inflammatory role.

A recent study out of the Mayo Clinic identified autoantibodies to the heart in POTS patients. This might be the underlying cause of the disease.

POTS seems to follow a lot of the same traits of other autoimmune illnesses. It has a higher incidence in women (who are more predisposed to autoimmune illness). It has a flare up/remission cycle in some patients (similar to other autoimmune illnesses) and it's triggered often by febrile illness or pregnancy (similar to other autoimmune illnesses).

[lumpchp]

Hi there, I'm kind of new to all of this talk also. From what I gather, pandysautonomia has allot of the same characteristics of pots and other dysautonomia diagnosis. I think the main difference though is that those with pots have extreme heart rate increases upon standing, and you will have an extreme drop in your blood pressure, sometimes to the point of asytole, as seen in your ttt. You should do a search in the forum for abbreviations,i think that should help you figure out the talk. I'm glad you decided to come back, i have found so much support here.,

[lumpchp]

Ok, just found where the abbreviation list :-) is. Look in, the frequently asked questions post, then scroll all the way down. Hope that helps

[E Soskis]

Medical jargon is very confusing to the non-medical person. Unfortunately, physicians forget to use common terminology when explaining things and it can get frustrating. Don't ever hesitate to tell your physician you don't understand his/her explanation and you need it in a more easily interpreted form. Of course, there are those physicians who purposefully use fancy medical terminology to cover up the fact they know very little about the subject at hand. There are also those that want to "impress" you with their advanced education and actually "talk down" to you. Whatever you encounter, you need to be your own advocate and speak up if you don't understand what is being said.

Some of your symptoms sound exactly like what I have been through. I have autoimmune dysautonomia (AAG) - in other words, my body makes antibodies against itself - unfortunately, they are attacking my own nervous system. I have sudden heart rate drops and required a pacemaker when my heart rate finally settled on beating 20-40 times a minute (way too slow). I receive plasmaphoresis about every 3 weeks - this is similar to dialysis. My blood goes into a machine that separates the red cells from the plasma. The plasma is then discarded and replaced with a substitute - in my case, it is albumin. The theory behind this type of treatment is simple: remove all the bad antibodies that hang-out in the plasma and prevent them from attacking my nervous system. The body generates new antibodies about every 2-3 weeks so, this is why I am on an every 3 week cycle of treatments. I have been doing this for about 2 years and am still able to work - just moved to a desk job instead of on my feet all day. There are blood tests that isolate the types of antibodies you have in your bloodstream - these blood tests will indicate whether or not you have an abnormal immune response that is causing the dysautonomia. I encourage you to explore this option. I read a lot of posts and often wonder if some of our members actually have an autoimmune dysfunction instead of other syndromes.

[Rachel Cox]

There are blood tests that isolate the types of antibodies you have in your bloodstream - these blood tests will indicate whether or not you have an abnormal immune response that is causing the dysautonomia. I encourage you to explore this option. I read a lot of posts and often wonder if some of our members actually have an autoimmune dysfunction instead of other syndromes.

Oh, thank you for responding! Yes, I think my general physician thinks that the above is the most likely scenario. I've had some tests (AVA and ANKA...? but I am working off a fuzzy memory for the names of those tests). Both were fine but he thinks there is more to explore. Nice to find someone else with some hardware! It always wondered why more POTS people don't have them?

[Rachel Cox]

To summarize, there are some fundamental theories as to what causes POTS.

Dr. Stewart advanced the idea of high levels of angiotensin ii on the assumption that an overactive sympathetic nervous system tends to produce high levels of angiotensin ii. However, the flaw with this theory is that only a few of his POTS patients exhibited measurably high levels of angiotensin ii, and losartan (which is an angiotensin ii blocker) does not seem to be a gold standard for treating POTS.

Dr. Levine advanced the idea that a small heart size is responsible for producing POTS. The flaw with this theory is that POTS seems to strike later in life, and is not typically seen present at birth or earliest childhood years. Additionally many people with POTS have a normal stroke volume and heart size as measured by other studies.

Dr. Bayles advanced the idea that reduced levels of norepinephrine transporter protein is responsible for POTS. This has the most evidence as studies have shown that blocking NET (norepinephrine transporter) in healthy controls produces POTS in them (That is, they get the rise in heart rate upon standing.) But he did not advance an idea as to what causes this reduced NET. He did rule out mutations as well as methylation. He suggested perhaps a cytokine/inflammatory role.

A recent study out of the Mayo Clinic identified autoantibodies to the heart in POTS patients. This might be the underlying cause of the disease.

POTS seems to follow a lot of the same traits of other autoimmune illnesses. It has a higher incidence in women (who are more predisposed to autoimmune illness). It has a flare up/remission cycle in some patients (similar to other autoimmune illnesses) and it's triggered often by febrile illness or pregnancy (similar to other autoimmune illnesses).

Oh YES! Thank you, new hero! That is very helpful I so appreciate you taking the time to respond. I have always felt there must be a reason for all these things to be going wonky. There must be a CAUSE. It's nice to see that the medical community is looking into it.

I had one doctor say to me "see now, if you had something more common, like MS or Parkinsons, more people would be interested in helping, more research would be getting done because more pharmaceutical companies would see big profits in finding a treatment. I think you shouldn't get your hopes up" ...thing is, if I don't get my hopes up it all seems rather bleak. That's not a nice way to live when there are already lots of things keeping you down.

Thanks for sharing about you!

As they say down here in our little bit of the world: Kia Kaha (stand strong)

[Rachel Cox]

Hi there, I'm kind of new to all of this talk also.

Nice to meet you! How did it all happen for you?

[Rachel Cox]

Some of your symptoms sound exactly like what I have been through.

So nice to hear that. Also nice to hear that you have a treatment plan that sounds logical! Thanks for explaining it to me in normal words. ;-)

I am trying to keep working. It's only part time but it means a lot to me to maintain a presence, and I love the work. On a work day, I have to not eat anything from when I get up until I get home because the post-prandial bloating is so very difficult to deal with if I have to move around. I just drink lots of water and hope for the best. It is exhausting though and I am often tempted to give up.

[DoozlyGirl]

Hi Rachel,

Welcome back to DINET. Jangle gave an awesome synopsis on the POTS theories, which is a good place to start. Keep reading and feel free to ask questions and in no time you'll be throwing around all sorts of medical jargon. I still remember how lost I was during my first few weeks. Collectively, DINET is made up of a dynamic, intelligent, persistent and wise members who come together to help each other make prgress in dealing with our awful circumstances and share in our silver-lining blessings.

You are wise to be seeking the 'cause' of your illness. I recently learned the 'cause' of my dysautonomia, which has given me new treatment options, hope and most importantly, relief in symptoms. During my TTT, I didn't pass out, but my BP dropped 38 beats, giving me the diagnosis of orthostatic hypotension (OH) and further autonomic testing showed I have autonomic neuropathy of the sudomotor and cardiovascular systems, which means my body can't regulate my body temperature or blood pressure, then my heart rate raises to try to make up for plummeting BP.

I spent my first 6 months bedridden, trying new meds, and getting worse before we stopped with the meds and let my body unravel on it's own. Slowly, I learned how to listen to what my body was telling me, an invaluable lessen in connecting the dots. This revelation guided me in unraveling my constant daily symptoms and actually being to see my flares/reactions start and stop.

Along the way, I was diagnosed with MCAS, mast cell activation syndrome, a defect in the immune system which is beginning to be recognized as a significant "cause" of POTS and other forms of autonomic dysfunction. My misbehavin' mast cells are trigger happy and are set off by things most people can tolerate: foods, food dyes, additives, fragrances, change in weather, inactive ingredients in medications, personal care products, gasoline, and other chemicals, pressure, hot, cold, contrast media, and a host of other triggers. Mast cells are located in every organ in the body, most prominent in the interfaces with the environment, such as the sinuses, nasal passages, GI system down through the tummy, and out the back end. Mast cells are also in the bladder, uterus, lungs and other organs. Mast cells are responsible for triggering asthma attacks, hayfever symptoms, bladder pain a la interstitial cystitis. skin rashes, hives, anaphylaxis etc.

When misbahavin' mast cells are activated, they degranulate and dump a few or hundreds of chemicals into the body, leading to all sorts of havoc. These chemicals are responsible for many, if not all of the symptoms I face. Mast cells degranulate and releases histamine, which increases the permeability of my blood vessel walls, and leads to a cascade of other chemicals being released. One of my worst symtoms is my plummeting BP, where due to the histamine release, the liquid part of plasma escapes out of my circulation and leaks into my tissues, causing flushing and this loss of blood volume leads to OH symptoms in me and POTS symptoms in others. If you flush, have reactions or sensitivities to all sorts of meds, foods, perfumes, etc, then consider looking into mast cell issues. As you post more, others will chime in and guide you along your journey.

Your sense of humor will take you far in dealing with all this. I look forward to learning more about your journey with dysautonomia. Until then, best wishes in connecting the dots.

Lyn

[issie]

When I first joined ---it was like reading Greek. I had no clue what anything meant. Wikipedia was my best friend. I had to look up nearly every other word. My best advice is to read, read and then read some more. You will be surprised how fast things will start to make sense to you. It's an interesting journey to say the least.

Issie

[Dizzysillyak]

Welcome back. I've been working on understanding medical jargon for the last 7 years. My background is computer systems analysis so learning new jargon was normal for me back when I was healthy. But getting chronic fatigue syndrome, dysautonomia, etc completely disabled me in 1990. I didn't discover how great the internet was until 2005. Duh !

If it makes you feel any better, at this point, imho, I've learned about as much as I need to and have moved on to enjoying my life. Personally, there's only so much I need to know since I don't plan on becoming a medical professional. Imho, you can get this level of info from the dinet homepage.

Learning how diet and nutrients affect our health and reading doozly's info on mast cells changed my life. Learning all the different types of dysautonomia / pots, all of the chemical interaction "theories" or all the medications isn't necessary for me.

And I see an integrative / functional doctor who I trust. She recommends drugs or supplements depending on what works the best. She's not a dysautonomia specialist but she understands how the human body works.

After experimenting for several years, I settled on a slightly modified version the Wahls diet (Dr wahls has videos on the web) so that I avoid common food intolerances and get as many nutrients as possible. I'm highly sensitive to gluten as many people with chronic illnesses are. Theglutenfile explains this.

I'm also avoiding high oxalate foods due to kidney stones. And take supplements and meds for sleep and mast cell problems. Treating my mast cell problems appear to have been the missing link for me. Thanks again for those who pointed me in this direction. This has stopped or severely lessened my reaction to my unknown intolerances.

I just started an exercise regime last month that I hope to continue.

Good luck with your health. Tc .. D

Ps. Sorry for the book. Lol

[Rachel Cox]

Learning how diet and nutrients affect our health and reading doozly's info on mast cells changed my life. Learning all the different types of dysautonomia / pots, all of the chemical interaction "theories" or all the medications isn't necessary for me.

....

Ps. Sorry for the book. Lol

Hiya! I have been seeing a nutritionist who seems to know more than most people I have seen about the ANS and all that stuff. She said my cortisol is frighteningly low so I am waiting for my next appointment with her to see what that means(?) and what is next from her. She's got me GF and DF and I am hoping to see some results. So far I have been GF and DF for six weeks but I am still suffering terribly in my tummy. How long should it take before I see a positive change, if there is going to be one?

Please never apologise for the 'book'... I LOVE BOOKS! Every word you guys write is helpful and gives me more hope, I appreciate them all!

[Dizzysillyak]

Good to hear you didn't think I was overly wordy. I can get carried away .. Lol ...

Everyone is different when it comes to what heals when. For instance, we think I had "full blown celiac

disease " by the time I went wheat free in july 2005. I went gf in sept after reading about gluten on

the web. It took 6 months for everything I ate, including homemade baby food, to stop feeling like I was eating glass.

It took 6 more months to get off the bland foods and add onions, garlic, pepper, etc. yum.

I haven't intentionally eaten gluten since 2005 so it probably would cause severe symptoms since I'm a celiac. I was recently exposed repeatedly while on vacation and I "think" it's causing some mild

discomfort and "d". I always get insomnia and myoclonus tho.

My worst gi problems nowadays

are from over eating, corn on the cob (just had to try it this year), greasy foods, some meats, beef and shrimp for sure.

Imho, the wahls diet is the best diet "plan" available. I don't take everything she says as gospel but

eating more veggies, esp leafy greens, helps me a lot. Trying to eat 9 cups of veggies daily about killed me. Lol .. It's basically organic fresh meats, fruits, veggies, fermented foods (if not allergic), sea veggies, etc ...

Probiotics can help. I prefer homemade coconut kefir.

Digestive enzymes from fresh papaya, pineapple

or mango usually help me. I tested low for elastace and am currently on creon.

But other digestive

enzymes have helped me at times. I just learned about enzymes in 2005. I seem to need stronger ones like Virastop and candidase. I use dpp-iv for

gluten exposure - glutenease, gltenzyme, etc. Solgar pancreatin helped sometimes too.

Also, fwiw, I had what we're pretty sure was gluten ataxia, problems with balance and walking. I always failed the rhomberg and I have the dq2 gene.

It was almost 1 year exactly

after giving up gluten that it simply disappeared. Granted my legs were weak from using a motorized

cart but I didn't have ataxia anymore. But someone I met on the gluten free and beyond board was ataxia

free in 3 months.

I had low cortisol but it wasn't that bad. Mine wasn't tested until I'd been gfcfsf, etc for 2 years then on the paleo diet for one. A lot of my symptoms were gone and I was walking normally by then.

I "think", it's been a few years now, that my doc prescribed

pregnenolone, dhea and testosterone for this. I know the test results for the three things I listed

came back low at the same time. Her biggest concern for me has been keeping me away from gluten.

I'm super sensitive.

I realize I just threw more new jargon at you. Lol. I had to learn all this when I started trying

to heal my body as opposed to just listening to my traditional md and taking prescribed drugs.

Watching Dr wahls videos should simplify this for you. Other integrative or functional doctors,

like dr mark hyman or dr myhill have the same great info too.

Good luck with your doc. Tc .. D

[leydengs]

No worries you will be throwing around medical terms in no time. I went to an appt and had to explain to the nurse just what POTS was and she said "Are you a nurse, you use to many medical terms and you explain it so well you sound like a nurse!" HA! I think we all know so much because for a lot of us it has been years and years of so many different tests. So many doctors get confused when we come in with 100 things going wrong that they tend to pick a couple and focus on trying to find a cause for those so they'll say "You have IBS" and you say "Okay so how does that explain my dizzy spells?" and they have no clue so here goes more tests.

We're glad that you're back!! I switched to GF and it helped a little but now I'm back to bad tummy pains again so I think I'm switching to DF too. I think it can take a bit for your body to adjust to GF because it has to get rid of all the toxins from the other foods and then your stomach can stop being so inflamed. How often do you see a nutritionist? That is a great idea!!! I didn't think of that but now that pretty much everything upsets my stomach it wouldn't hurt to see one.

[issie]

I have issues with foods too and have just started using GastroCrom for mast cell issues. If you don't have insurance ---you probably won't be able to afford it -----it is awfully expensive. I still have high pulse rates with standing and my bp still goes up with standing ---but, when I'm seated things are better then they were before. So, it's only going on two weeks and it's supposed to take 6 weeks to have full effect ----so we will see what time brings.

Issie

[Dizzysillyak]

Hi issie,

Good to hear you're a mast cell protocal responder too. I responded right away. Like after my very

first Wal-zyr. I had chronic swelling so this should've been a no brainer for me. Lol. It's been about 6 weeks for me now. I'm on Wal-zyr, Allgra, dye free benadryl and nasalcrom as needed. No h2s yet.

I still have oi but I'm no longer feeling the need to lay down quickly or as often. I've noticed a lot less swelling too.

I still feel my upper body hypoperfusion reversing when I lay down. I'd love it if that stopped.

On the bloating ... Do you take digestive enzymes ? I need to watch what I eat of course but I also

have to take a good digestive enzyme. I've tried most of them but found Solgar pancreatin,

fresh papaya and creon worked the best for me. Once in awhile, I'll take Candidase or Virastop for digestion.

Tc .. D

[issie]

Yeah, I'm a believer in enzymes. You have to be careful with pancreatin though ---that can affect your bodies natural production by the pancreas. I use vegetable based enzymes. I also believe in probiotics for good intestional flora. Another goodie is "Symbiotics Colostrum".

Issie

[Rachel Cox]

Hey, Leydengs, thanks for your response. I am going to see my nutritionist next week. She has given me digestive enzymes to take with my food too. I am hopeful that she will be able to offer more help. Last time I saw her she said she needed time to do some more research, so that is a positive step! She follows the Dr.Libby method. http://www.drlibby.com/ which is all about balancing the hormones to support health naturally. I am hopeful! I wish you all the best for your quest to find a good nutritionist too. I just reached a point where I thought, 'may as well see how I can help myself through what I put into my body'.... it's about all I can do! Nice to have positive action though.