New With Many Questions

[cordellia]

hello all,

greetings from central europe.

so happy to have discovered dinet. what a pleasure

it is to read and learn from all of you...

this is my first post and i am filled with questions. hoping that some of you

can offer insight and feedback. would so appreciate your comments...

and if you could kindly share your own experiences. thank you....

i was diagnosed with POTS (june 2008) though i am not certain that this

diagnosis is accurate. two years ago a doctor here in poland said 'dysautonomia'--

another said 'depression', still another postulated 'epilepsy', a fifth chimed

in with 'pre-syncope'....

my US doctor theorized that it all began with a virus. the truth is that i simply

cannot remember the sequence of events leading up to my illness. i know only

that for several years the weakness, the overwhelming fatigue, the insanely low blood pressure,

the palpitations, the lightheadedness and the memory loss... made life nearly

intolerable.

after i lost 60 pounds in a few months and could no longer walk--my local doctor began

paying a bit more attention to my condition.

slowly, with the help of my husband, i made my way back. after several bleak years, i began to improve.

most days i can walk, even stand for a moderate amount of time... the light headedness

has abated... i still am unable to do what i once did (pilates, yoga, elliptical machine) but i am very grateful to simply

be walking. the main issues, facing me now are low BP and erratic HR (tachy/brachy) , palpitations, memory

loss, breathlessness, sleep apnea and weakness...

have had several tilt table tests: my HR dropped to the low 30's as the test was

starting--test cancelled... TTT two--lost consciousness after nitro... TTT three

deemed inconclusive...

holter(s) captured the erratic heart rates...

my heart rate varies dramatically--while lying still it ranges from low 40's to low 50's.

if i turn over in bed, move suddenly-- it can instantly shoot up 30 --40 points... it is as if my heart is

hyper responsive to any stimuli or motion. brushing my teeth, washing my hair... can result in

a HR over 200... the tachycardia has a rapid onset and offset... the tachycardia

occurs throughout the day... even while i am sleeping (according to recent holters)

my blood pressure is another saga... some days 80's / 50's and on good days

low 90's / low 60's... BP changes quickly as well.. pulse pressure is another issue...

does anyone else with POTS have rapid onset / rapid offset tachycardia?

low HR while lying down or being still... i am perplexed by this aspect of the

condition.

am scheduled for a followup in the US in may. doctor says he would like me

to try beta blockers... with my heart rate in the 40's periodically, i am fearful

of BB's. can any one offer advice?

some things that have helped me:

each day i take tumeric (1600 mgs) COq10, armour thyroid, and a host of vitamins.

have also taken butcher's broom (succeeded in raising my BP--i was very pleased with

the effects)

my lightheadedness was chronic for two years. last year i developed an ear infection--

could not eradicate it... doctor tried augmentin, sumamed and finally cipro--this went on

for weeks... after about five weeks of (high dosage) antibiotics i noticed that i was no

longer lightheaded... am not sure if there is any correlation---just thought that i would

put this out there.

for me congestion is a problem: i cannot take any cold remedies--BP plummets and i am utterly

daffy... for nasal congestion i use sinus buster--a natural pepper spray that works incredibly well

for me. i also use muellin oil-- whenever i have respiratory issues--a godsend.

after 3 months of taking tumeric my hands and feet are warmer--my blood draws are easier and

my fibrinogen count is lower.

i know that i have covered lots of topics here--forgive my lack of segue... any feedback you

can provide especially regarding rapid onset/ offset tachycardia woud be most helpful-- i do not have

the chronic tachycardia that seems to be a hallmark of POTS...

closing with thanks and best regards to all.

cordelia

[april abbott]

Welcome to the forums! I don't come here much anymore, but do stop by from time to time. This is the best place to be if you have questions or concerns.

low BP and erratic HR (tachy/brachy) , palpitations, memory

loss, breathlessness, sleep apnea and weakness...

These are some definite symptoms of POTS. I obviously can't diagnose you myself, but you have had 2 doctors tell you that this is what you have, and you failed the TTT. Was the American doctor a specialist in autonomic disorders? Finding a specialist by looking up a doctor on the dinet main site was truly key in getting diagnosis and treatment.

I read your entire post, and it seems you are somewhat skeptical about the diagnosis, mainly due to conflicting diagnoses given by different docs. The thing about any form of dysautonomia, and many of the others will testify to the same thing, you are going to encounter doctors who have either never heard of the disorder at all, or whom believe you are crazy. You can search the forums here and read dozens of nightmare doctor and ER visits. I have several of my own. I was told for months that either nothing was wrong with me or that I was depressed. Depression and anxiety do seem to be the "go to" diagnosis for a lot of doctors if they can't find anything with the "typical" blood test in a doctor office.

Dysautonomia can also come in waves, leaving periods of wellness for weeks or months, only to blindside you and come back with a vengeance. Some here have good stories, though, so don't lose hope. I am a perfect example. Once I found the correct meds, I became pretty highly functional, although I still deal without a lot of fatigue and inability to tolerate heat or exercise. My dysautonomia seemed to be triggererd by pregnancy, although I now believe that there is a genetic tendency in my family. Also, you will learn from this forum that the symtoms can vary so much from person to person, and even a single person's symptoms can change and evolve from day to day. I had so many different symptoms to begin with, but they didn't all happen at the same time. One week I would be exhausted and have a high heart rate, the next I would have insomia and my heart rate would be low and my muscles would cramp.

I can't really say how your body will react to beta blockers, especially if you already have a low heartrate. All of us react differently to different meds. My magic pills seem to be the beta blocker Atenolol and the benzodiazapine Clonzepam, both in small doses. I'm sure there are others on the board that can relate to your situation. My heartrate and BP was always on the high side.

I suggest using the search function on this forum to look for different symptoms or other types of questions. It works really well.

Good luck with everything.

[mjan]

Hello and welcome Cordelia~!

How are you now? I hope having a better day. You will get support here. I am still learning about what I have..dont have.. as I am still being tested after many many years of complex symptoms and episodes.

I am on here every day.. HUGS to you my dear!!

Warmly, Jan

[Ernie]

Hi,

Welcome aboard. I take BB and it is helping me. You might start with a tiny dose and see how it goes.

[carinara]

Hi Cordelia, welcome on the Dinet Forum ! Iam also from europe (Germany)

Finding Dinet in 2007 really changed my life. With the help of the physicians list on Dinet i finally got diagnosed after suffering for over 10 years without getting any help from my doctors. Reading through the posts on the forum helped me so very much, it felt as finally all the different symptoms and health problems fell into place and for the first time in my life i knew what was happening with me.

Now i have a great POTS specialist in germany. Maybe you want to think about travelling to germany to see a specialist?

All the best wishes

carinara

[Guest tearose]

Hello and welcome!

Try to make some time every day and read the posts here. There are many good old threads too.

I must manage through all behavior modifications. I use compression, electrolytes, water and a seat cane...meditation helps too.

be gentle with yourself, there is a learning curve,

best regards,

tearose

[cordellia]

carinara--

thank you so much for your kind response and encouraging words.

i am interested in locating a physician in germany. our good friends live

in berlin and have offered to help us research local docotors there.

though there are many well intentioned physicians in our area (krakow)

we have yet to find a health care provider with the necessary expertise and experience...

finding the right physician is paramount... i am certain that you can relate...

may i ask the name of your doctor--and his or her contact information?

once again--thank you for reaching out to a perplexed stranger.

with kind regards,

cordelia

[cordellia]

good day tea rose: thank you for your welcoming words and encouragement--both are greatly appreciated. cordelia

[carinara]

Hello again,

Iam happy if i can help you, with some more informations: Prof. Dr. Jens Jordan (Director of the pharmacology institut, medizinische Hochschule Hannover) is the most experienced expert in Germany. He worked with Prof. D. Robertson in Nashville, TN for a long time. The Professor who diagnosed me, recommended him to me. (Because i was searching so urgently for an experienced expert). I contacted Prof. Jordan at the school of medicine in Hannover and he scheduled me an appointment with his 2 assistant medical directors who are very familiar with POTS , iam very glad that i finally found somebody who knows and got experience with POTS.

I found out, that his whole crew moved from the autonomic section of the charite hospital in berlin to Hannover a few month ago I?am not sure, if there is still an autonomic section in berlin, but i would imagine there is. If you need further information, please feel free to contact me via Email.

Wish you a nice weekend, carinara

by the way, i also take a tiny dosis BB 4 times a day. The dosis is so small, that normal doctors dont believe it would help much. But it sure helps me a lot. My BB is called Dociton 10mg. I take 5 mg in the morning and at night + 2,5 mg around lunch and in the evening. Iam very sensitive when it comes to medications, in

the past i suffered lots of bad side effects. But never with my BB, this tiny dose works very well for me.

[cordellia]

Hello and welcome Cordelia~!

How are you now? I hope having a better day. You will get support here. I am still learning about what I have..dont have.. as I am still being tested after many many years of complex symptoms and episodes.

I am on here every day.. HUGS to you my dear!!

Warmly, Jan

hello wwwm,

there is so much to grasp--so much information to sift through... happy to have a resource such as this...

sorry to hear that you are still struggling to define/diagnosis your condition...

as i wrote in my earlier post--i have made progress over the past few years and for this i am

incredibly grateful... i too am searching for a concrete diagnosis and an effective treatment plan.

thank you for your insight and kind words.

cordelie

[Rachel]

Hi Cordelia,

Welcome to DINET. I'm glad you find us. I hope you find a lot of friends, help, and support here.

Rachel

[momofsara]

Welcome, Cordelia, you have found a home ..... This is the most wonderful place for information, communication, and compassion.

Again, WELCOME

Best to you always,

Susan

[flop]

Hi Cordelia,

I just wanted to say welcome to the DINET family. I'm another European on the forum - from the UK. Good luck in finding an autonomic specialist doctor. I see Prof Mathias in London and he is very helpful.

You mentioned that your episodes of tachycardia start and end suddenly - has a cardiologist said that it is definitely sinus tachycardia and not an abnormal heart rhythm like an SVT? I ask because sinus tachycardia often gets gradually faster then gradually slows down.

Take care,

Flop

[cordellia]

Hi Cordelia,

I just wanted to say welcome to the DINET family. I'm another European on the forum - from the UK. Good luck in finding an autonomic specialist doctor. I see Prof Mathias in London and he is very helpful.

You mentioned that your episodes of tachycardia start and end suddenly - has a cardiologist said that it is definitely sinus tachycardia and not an abnormal heart rhythm like an SVT? I ask because sinus tachycardia often gets gradually faster then gradually slows down.

Flop

thank you flop....

....for the kind welcome and for referencing professor mathias...

your feedback is so appreciated. all of this is new to me.. we are wading through literature---and attempting to understand POTS and what this diagnosis actually

means....

my husband and i are americans--who have lived in central europe for the last sixteen years. though i am being treated in the US--- i am keen to consult with healthcare professionals here in the EU.

the rapid onset/ offset nature of my tachycardia is perplexing... one doctor suggested that it could be inappropriate sinus tachycardia... a 30 day holter, according to my EP, revealed a rapid `regular' rhythm... how i thought can any resting heart beat over 200 bpm and still be termed 'normal'... when i asked for clarification i was told that i should not be concerned because the rhythm is NORMAL. (several SVT's were noted as well) i was seen at the EP lab at mass general-boston MA; a harvard teaching hospital with a widely regarded reputation. i do not question the credentials of my EP'S... perhaps i simply lack the intellect to process what they are telling me.... i want to delve into this further.

flop, once again, thank you for your counsel and insight.

with warm regards from krakow.

be well.

cordelia

[flop]

Cordelia,

I'm glad that you've seen good EP doctors, if they think the tachycardia is sinus in origin that is much more reliable than a general medicine doctor saying it is sinus (ECGs are even harder to interpret properly than they look, especially when going as fast as 200/min!).

I didn't think your name sounded at all Polish, though I was thinking that you had excellent English, LOL!

Flop