Goschi

Hi, Corina!

I remember you being from the Netherlands! ;-) 

Hope you are doing fine?

Thanky you so much for your reply , Katybug! I am very sorry to hear that you are affected with this too..

However, I am not so sure, if we actually have the same thing. I never had (and don't have now) "classical" tinnitus with "ringing" in the ears and the like.

I simply hear my pulse wooshing in my left ear - 24/7. The severity doesn't change with the Intensity of my Pots symptoms. Nevertheless, for me it feels somehow "connected".

And I read on the net, that pulsatile tinnitus ALWAYS has a physiological cause... 

Hello everybody,

I know this is a forum mostly used by English speaking people - however some may be from other countries, I guess / imagine? 

I personally am from Vienna / Austria. Anybody from the Central European region? Just curious! :-)

Best wishes!

Hi, everybody!

Maybe this question might sound a bit strange - but the more time passes, the more I get the imagination that there could possibly be a connection to POTS:

For more than 3 years I have a so called "pulsatile tinnitus", meaning that I can hear my pulse "wooshing" in my left ear. 

Does anybody have this...? And could there be a possible connection to POTs

Thanks in advance for any replies!

Mine is exclusively in my soles, mostly also my calves and sometimes my legs, when I sit too long (can be already after 15 min., sometimes only after 2 hours). In every other situation/posture (supine, walking, standing,) I don't experience any pain anywhere.

Yeah that does happen

And are there any theories, why Prednisone can do this? Can it probably even tell something about the underlying cause of our POTS?

Same here - my normal BP is 120/80. Being upright for to long, it can reach 165/115. Originally, docs were quite puzzled, but now they interprete it as a kind of "hyperadrenergic state" which I get into, as my body tries (but fails) to compensate for the blood circulation irregularities. Sounds very logical

Vanderbilt recently suggested that hyperadrenergic pots is a description of a presentation rather than a subtype.

Very interesting, Rama!! Do you have any link for this?

I always felt it must be like that - I was originally diagnosed with "hyperpots", (my norepinephrine was rising significantly during the TTT), but eventually it is clear now that I have neuropathic POTS (I have SFN) and I am simply reaching reactive hyperadrenergic states occasionally.

Thanks, Chaos, I know about the concept of different kinds of PEM. I already thought (actually feared....) that it may something like that, what I experience.

But in fact, it is much more "specific". In can build up my physical energy and fitness almos "indefinitely", if I don´t overdo it from day to day. And I will never "crash", als long as I am going ahea slowly but steady. (On some parts of my body, I already start to look like an athlete, right now ;-))

But in addition to this (I start to doubt whether it is at all related....?) my brain fog, which is always practically gone every time right after exercising, (very reliefung!!) seems to "aggravate" in general over the months...

In my case, Prednisone actually triggered POTS extremely.... Before I got Prednisone infusions in hospital, my POTS was almost not existing - after that, I never came close to how I was before...

dancer, this is so wonderful to hear! I really wish you ongoing progress and improvement! I send you much confidence and energy for your way towards health!

And let me say that I am particularly impressed by your attitude = never giving up hope, not even after decades!

I can so much relate to that, as I too will NEVER EVER give up the struggle for improvement and eventual health!

Best wishes! You will succeed!!

That's so wonderful, congrats!!!

Don't worry too much about how you will manage it! You will be so much distracted by what you do during work - many symptoms you will automatically notice much, much less than at other times!!

Best wishes, good luck!!

Hey, rama! You mean that if I do always feel better in terms of brain fog right after exercise, but in general it gets worse step by step when I establish an exercise regime that I can maintain over a couple of weeks is typical for POTS...? Thats unfair! ;-)

I do take midodrine, just reduced my dosage (see other recent thread) - reducing midodrine recentyl actually reduced my brain fog, btw.!

Thanks, rama! This is in fact encouraging! Btw I recently "played" with my dosage and finally ended up actually reducing it. I am now on only 2,5mg once per day in the morning - that is how I feel best, twice 2,5mg was definitely too much.

My final goal would be to come off it completely, as I have a gut feeling that this med may help a bit with POTS - but overall, I don´t feel really well on it...

Yes, corina! Chasing docs, who can´t help you, is actually a waste of time in our already very complicated life... Have understood that rather soon, but simply didn´t want to believe it, to be honest....

Let´s hope that finally all of us will find our underlying cause(s) and a proper treatment! Don´t ever give up hope!!

Hi, gjensen,

I have not actually "fired" docs (yes, maybe 3-4 of them though), I have rather been somehow "dismissed" by them, when the actually didn´t know what to do. (I should have fired the before ;-))

And yes, I am thinking about going back to one of my POTS docs. Still didn´t figure out which one will become my "victim"! ;-)

And also yes, if I find the cause of my small fiber neuropathy, I will most probably have found the cause of my POTS! Therefore, working on this issue, is my priority. Finding docs here, who specialize in neuropathy in general, is actually an easy task. But finding someone, who is willing to treat a Patient with small fiber neuropathy - wow, this is almost impossible, as I have learned during the last 12 months...

Anyway, I won´t give up the struggle!

Best wishes to you!!

Hi Sarah,

thanks very much for your ideas! I have already thought of such a constellation of docs (=POTS doc working together with other specialists) a long time ago - however, it doesn´t seem to work, at least not where I live... Cooperation between docs (be it from the same field or another one) seems to be a kind of "unwritten taboo" in my country. :-((

I still remember when I had a neuro and a cardio a the same time (not that wrong für POTS, I guess...). As they realised, both docs asked me quite upset (and independently from each other):

"So what, are you my patient or Dr. xxx`s one? Just make up your mind, you can´t be the patient of two docs for the same condition! I really couldn´t believe my ears... Also some hospitals almost denied to accept me, as I had already been before to another hospital for the same desease... (and all that had nothing to do with our health insurance system - every appointment and hospital stay was covered without any problems by my insurance).

That must sound almost crazy to your ears - but the European and the US health systems are actually very, very different in so many ways - not only institutionally, but particularly concerning doc´s attitudes and approaches, as I have learned since I am a member in worldwide patient forums...

So, I will have to create my very own strategy (once more) - but nevertheless, thanks a lot again for reflecting this situation for me!!

Best wishes!!

Hi Angie,

I am really sorry to hear, what you have to go through at the moment...

I don´t have a "full recipe" to cope with flare ups - but I would what you need now ist rest, rest and again rest!!

If possible, avoid ANY stress triggering things (physical and emotional). This will definitely help to start a recovery from your flare!!

I send you much energy, but in first place confidence and a calm mind!!

Hi Corina,

thank you so much for your reply - I am really very sorry to hear that we seem to be on the same boat... (let´s kick the docs over board and enjoy the cruise, looking at the blue sea, having cocktails...;-))

I guess, I could reestablish a relation to one of my 4 POTS docs (they are the "POTS-top docs" here in Vienna) like you have it. I would definitely get an appointment any time and most probably they would also agree that I keep searching for new options (as I am doing all the time), then we discuss them and the (dis)agree. Btw, I was already told by all 4 of them that I know more about POTS as they do - so I will hear this again and again, if I start to get in touch with them ;-).

My main problem with (re)establishing this kind of doc-patient-relationship is most probably my personal approach. I actually don´t want to talk to them about "POTS treatments". This would only mean "masking symptoms" being the topic once again. And that is 1) what mostly didn´t work with me and 2) what in fact I actually don´t want at all.

I am already on my way to dig further into my underlying cause(s), having made some first findings successfully! But for going on this journey, POTS docs are definitely the wrong partners... (they even admit this, also not being angry about me - just saying their approach is different, it is actually nothing more than "getting POTS symptoms under control".)

But I have already learned that this is not really going to work, at least not to a satisfying extent. (The POTS-docs know that too - some of them were honest enough to admit it to me....)

Thus my particular problem at the moment is actually more copmplicated. When I go to docs in the fields where I know that there´s a high probability that my underlying causes are in their specialization, it doesn´t work - because as soon as they hear that I have POTS, they want to refer me back to one of the "Top 4 POTS docs". But they don´t want to understand that I have already left the stage of getting diagnosed and trying to "mask symptoms" far behind me. Even if it is their specialization what I want them to test me for, they are usually not willing to do this, as soon as they hear "POTS, POTS, POTS....!"

That´s were I am actually pretty much stuck at the moment... I guess I will have to take a couple of days and rethink the whole situation, in order to develop a new strategy. By no means I am willing to go "backwards", as I personally have already invested so much time and energy in educating myself and going FORWARD!

Once again - thank you so much for your reply and reflecting my situation! You are a such a good friend, if you don´t mind me saying this!!

Hi everybody!

I am facing a problem which I actually don´t know what to da at the moment.

During the last weeks I actually "lost" all the docs who diagnosed (and partly treated) me through the last two years.

There were altogether 4 docs who diagnosed me with POTS (2 of them by TTT, the others with numerous standing tests). Afterwards they tried the usual meds - most of them had little to no effect on my POTS. The "POTS" specialists are obviously at the end of their rope with me and one after the other eventually dismissed me. Thus I don´t have a "POTS doc" right now.

In addition, I had taken the initiative and went to some other specialists (neuro) who finally diagnosed me with small fiber neuropathy by skin biopsies (the POTS docs themselves were not interested in that at all). Anyway, also These docs showed no further interest in pursuing the SFN (finding the cause, treating...) after they "successfully" made the diagnosis.

Lately I went to a geneticist to be tested for Ehlers Danlos and Marfan (both negative), but I found out that I am MTHFR homozygous. Again, no further treatment from these docs...

So, summarizing again - I rather easily found some docs (by myself) who actually had no problems diagnosing my different conditions almost immediately - and then actually dismissed me without any further assistance...

Has anybody made a similar experience...? And if so, what did you do as a consequence...?

Thanks for any adivce! I wish everybody a nice day!!

I recently got a very strange, new symptom:

The area around my knees feels quite "strange", a bit numb, a bit tingly, actually not so easy to find a proper word for it. It occurs when I am upright and stays that way for some time, after I lay down.

It is definitely only both knees, calves and tighs feel quite ok!

And there must be something particularly about the knees, as they both feel very cold to the touch (i.e. the skin on them), whereas the skin on calves and tighs feels absolutely normal concerning temperature!

What is this.....????

angelloz, thanks! I actually thought it should be normal to a certain extent for every (healthy) person. (btw, thanks for the magic trick - I will try it out as soon as possible and tell my friends I only have the ability to do this magic since I have POTS - which is not even a lie! ;-))

Again thanks everybody for their responses! I wish us all ongoing progress with loosing the pronounced colour changes in our limbs!!

Corina - again, we see, how different we all are...

I have no problems at all with raising my arms for a longer time (except them getting pale, but that doesn't "hurt"). And my HR even goes down (!) when I raise my arms - maybe because there's more blood available for the other upper parts of my body...?

The closer we look at each and every symptom of our diseases, the more I believe that there is something going on with us that has literally nothing to do with what medicine has "found out" about POTS/dysautonomia over time...

Dancer, that's what I expected - worse brain fog right after exercise (sorry, you are experiencing).

But for me it's quite the contrary - right after exercising, my brain fog is always better! But if I continue to exercise regularly for a couple of weeks, my overall brain fog gets worse and worse... Not, as it should be, I guess...?

Thanks Katy and Gjensen, for your responses - isn´t that a strange disease...?

Exercising definitely helps me with my overall physical fitness. I can do more without being physically exhausted (going for longer walks, Lifting heavier weigths, etc.etc.) - my muscles react "the right way", so to speak - this is at least something pleasant.

But my brain seems to suffer from my "physical recovery" - and that´s not fair!!