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Pots.....or Just Anxious?


GN1978
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Hello all,

First time poster here. Just looking for an opinion from those who may be suffering the same symptoms as me.

I've had issues for just over 4 years. All started with a bad case of norovirus. A week later, I start feeling quite jittery and shaky. Since that point, my health has gradually deteriorated, but with periods of remission/feeling better.

My problems seemed to centre around standing up. Feeling rocky, weakness and shakiness in the calf muscles, a tightening in the throat, needing to swallow, but struggling to do so. Then came the chronic shoulder pain. A couple of episodes of almost passing out.

I put this all down to ear issues as I had really bad sinus problems too. But, these were resolved but my other symptoms remained. So, I'd had enough. Went to my GP. Anxiety/stress was the call. I was wasn't buying this. Apart from a bit of health anxiety, I'm a laid back person.

Then, things seemed to get better for a few months, still feeling not entirely great upon standing, but better. But, 5 months ago, a turn for the worse. I'd been feeling rocky in work. Then I was leaving for the day and almost passed out, felt like my legs were struggling to hold me. Very shaky. Back to the doctors.

Her response - "stress, anxiety? No, I'm not buying that myself. You don't seem a stressed person". She then decided to take my BP and heart rate while sitting and standing. There was a drastic leap. She told me to come back a weak later, did the same tests with the same results and sent me straight to hospital, where a preliminary diagnosis of POTS was made based on my sitting and standing BP and heart rate.

This was in March 2013. I've felt terrible since then, apart from a spell of 4-5 weeks when, although not 100%, I felt we'll enough to return to work. But I'm back off again. Feeling rubbish.

Due to a few administrative muck ups, I'm yet to see a cardiologist/specialist. Have an appointment on 6 August 2013. But, I'm worried. I want to know what's up with me. I want treatment/to maybe feel better, but what if the other docs were right, what if it is anxiety/all in my head? What's the next step then?

But, on the other hand I'm utterly convinced that I have POTS or some other form of orthostatic intolerance. I've had loads of test like 24 hour heart rate monitor/BP monitor (normal, a few spikes, but I was spending most of the time sitting as I felt really unwell at the time), ECG, 24 hour urine sample, kidney ultrasound - all clear.

Why I'm convinced I have POTS is because of the following symptoms:

- heart rate increases from 65-70 average resting, to 115-120 just on standing

- increases to around 140-145 after just 2-3 minutes of slow walking

- chest pain/pressure

- breathlessness, I get out of breath even reading aloud, or singing. I never used to be like this.

- feeling a bit confused/lost for words, or the right word, at times

- waking up in my sleep, feeling like I'm choking/gasping for breath

- chronic left shoulder pain/extending into neck and face (started at roughly same time as rocky spells, x-rays done, no tears, abnormalities etc)

- numbness in the hands and feet, particularly on the outside (e.g. near the little finger/toe side)

- random, involuntary muscle jerks

- swollen feeling in the hands and feet, hands become noticeably red/mottled looking, as does the wrist/lower arm area

I know there's SOMETHING wrong with me, but I'm starting to doubt myself now? I'm used to being told its all in my head, that I'm anxious? The doc even wanted to put me on anti-anxiety medication (Sertraline - gave it a bash, made me feel like death warmed up!)? What if the cardio is of the same opinion?

Opinions? To you folk more experienced with POTS, do my symptoms sound familiar? I'm looking for some light at the end of the dark tunnel that's been the past 2-3 years when I see the cardio next week, but don't know what I'd do next if he didn't find anything wrong with me!

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I can't diagnose you but I have Pots and I have all of the symptoms you describe. I can tell you that I think you know your body the best and should listen to your intuition.... if you don't believe it's anxiety, then listen to that and have the rest checked out. It certainly sounds like Pots is a good possibility. Good luck at your appt..

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If you do not firmly believe that it is anxiety, dont let anyone convince you of it. Im not a doctor, but i have been misdiagnosed with anxiety and despite recent undeniable proof, many are still clinging to that insanity.

Do you believe anxiety causes your heart rate to spike only when you stand up and only every time you stand? Do you believe you have 'anxiety' when standing that could miraculously go away when you sit/lay down/your heart rate goes back down? what is your horizontal heart rate? do you feel 'anxious' after you have rested for a few minutes and your body has calmed down? do you believe it is anxiety or is your body maybe getting all scewed up when you stand which includes things which could be mistaken as anxiety but are really real pysical symptoms with real physical causes?

I was mis diagnosed with pots. What i have is a dropped/floating kidney whch causes pots symptoms and dysautonomia symptoms. resting hr in the 60's, goes up to 130 just standing, norepinepherine level tripples when standing, i get short of breath, coathanger pains, chest pains, fasiculatonis, racing heart on waking depending on position, etc... everything settles back down after laying down for a few minutes-until the deitl crises set in... I do not have anxiety despite pages of medical records stating doctors opinions tht this is anxiety. how wrong they all were/are.

my questions were really rhetorical, but food for thought. Good luck!

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GN

welcome to dinet. I hope you will be able to find some answers here.

Being a POTS patient myself, I can tell you that all the symptoms you have listed sound very familiar. They're something that I have either dealt with at one point or another during the course of my illness, or that I have read about here on this forum or in some medical article.

With that in mind, your drs are your best allies right now as it's pretty much up to them to properly diagnose you and help you manage your condition, whatever it may turn out to be. There are many conditions that may look like POTS that your drs may want to rule out before diagnosing you with POTS. In my case my drs ruled out my thyroid, my adrenal glands, diabetes, abnormal electrical activity in the brain, abnormal heart rhythms, heart valve issues, tumours, Lyme disease, anxiety, angina, lung issues and a bunch of other things I have forgotten all about. At the end of the day, in my case it all came down to POTS.

Best of luck!

Alex

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Sounds like POTS to me! Welcome! :-) if you have pots you should know what you should avoid eating. On the Dinet homepage it tells you what to avoid. I feel strongly about avoiding nutmeg because it has a chemical in it that damages the autonomic nervous system and made me end up the hospital, it made my symptoms four times worse.

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we cant give medical advice here but as for me, the weak legs, singing weakness, and gasping for breath all meant a direct correlation to sleep apnea. Whether its obstructive or central the act of

stopping breathing during sleep messes up your various nervous systems big time. And for

some the out of breath (dyspnea) is what sends us to cardiology.

Unfortunately, apnea is about as underrecognized by some docs as POTS. Or dysautonomia.

Then for me anyway, there were considerations of blood sugar, glucose, hypoglycemia, and

also adrenal cortisol function and thyroid tests.

Finally, I personally found direct correlations to gastro. Sudden food allergies such as dairy, eggs,

peanuts, canned fish (histamine), and EXTREME problems with aspartame (diet coke) and MSG (which makes me feel like ive been poisoned which it IS).

I personally keep a diary. Anytime I go into a bad flare like that of symptoms, i want to know whats

been going on/eating/doing the past 12 hours.

I usually find a correlation.

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Hi GN,

Welcome to the forum. Glad that you found us but sorry you have been through so much. Your medical journal sounds very similar to my son's. My son got a virus in December of 2010 and things just kept going down hill. He was diagnosed with POTS in October of 2011 by a cardiologist. My son was seen by MAYO in December 2011 and they reconfirmed this diagnosis. However, My son has had many ups and downs. He was put on medications to help control POTS symptoms but his body has not responded very well. My son has tremors and it was not until this last year that symptoms would stop and then start up again. My son's tremors would always start up again after an upper or lower respiratory illness. Our family doctor caught on to this and referred my son to an immunologist. At this time, we are waiting on more test results because the fist labs have indicated that my son may have a specific antibody deficiency I would suggest that you find a POTS specialist but if you feel like it it might be related to your immune system try to see an immunologist if you see symptoms repeat themselves after an illness. I wish you the best and if you would like to read about my son's medical journey, it's on a blog called survivingpots.com. Good luck with your doctor's appointment. Hopefully you will get some answers.

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Well, that went well.

The cardiologist was really nice, friendly and helpful. He reassured me that, while my symptoms are unpleasant, that I should try not to worry about them as my previous tests show that I have a perfectly healthy heart.

He agreed that my symptoms all point to POTS and has referred me for a Tilt Table Test. I told him about my "poor man's tilt table test results" and he agreed that they pointed to POTS too. I've been prescribed beta blockers, 2.5 mg for 3 days, then upping to 5 mg. He thinks that my symptoms, while unpleasant, are not severe and that the medication prescribed should help alleviate a lot of the symptoms, particularly the chest pain, palpitations and breathlessness.

So, bit more positive than I was, and we'll see how I get on with the meds, even though he's warned me that I may feel drowsy for the first couple of days, which I do now already, having taken a pill about 2 hours ago.

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GN,

sounds like you found a dr willing to listen and to help, and that's awesome. In my experience it is indeed advisable to start with a low dose beta blocker and allow yourself to adjust to that before increasing it to full dose. The drowsiness was one of my big issues while on betas, hopefully yours will go away soon.

The news about having a healthy heart is excellent, and having a ttt will really help your dr get more info about your autonomic nervous system and will help him/her better address your particular situation.

Take it easy and keep us in the loop.

Alex

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I've got to come off the BB's two days before the TTT (ha, I'm getting used to the acronyms now).

I'm taking Bisoprolol (the UK/English name). From experience, how quickly should these work?

As I took one about 6/7 hours ago, and apart from a bit of drowsiness/lethargy, I feel quite good. Chest pain/pressure has subsided and my standing HR is down from around 120-125 average to about 95 already.

Should they work fairly instantaneously?

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My meds worked pretty quickly as far as the bp and hr control. Although you may notice that not all your symptoms go away so easily. You may still have triggers and sudden symptoms to deal with. If you know that ahead of time it will probably be less frustrating or scary. You may notice from reading posts from other's on different forum topics that most of us here have symtoms to deal with even with our meds. It sounds like you are on a good path to stability! Be well!

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