Dysautonomia/POTS? Or is it something else?

[PrPSc]

Hello,

I just joined and saw there was a fairly active group here dedicated to dysautonomia and POTS.

This has been a nearly 3 year long battle for me with my current symptoms, but I have had dysautonomia-like symptoms for most of my life (gastrointestinal problems, fatigue, OI, brain fog).

Those symptoms have followed me throughout my life and flared up 3 years ago. Over the winter of 2011/2012, I felt tired and like my heart would race randomly throughout the day. I was having trouble with coursework and focussing on my job. I was diagnosed with mild (inappropriate) sinus tachycardia (about 120 bpm during an episode) but was told it was nothing to worry about. It seemed to clear up by the summer.

From December 2012 to March 2013, I had yet another flare up. I felt ill and fatigued for 4 months. I was told I had CFS. It resolved on its own, but I had to spend 4 months sleeping 16 hours a day and I missed out on many opportunities.

Over the summer I again had another flare up. It started with severe gastrointestinal symptoms. I then started to feel dizzy and extremely fatigued. Within 3 days of my symptoms starting, I had the first of what I call my "episodes". My arms and legs tingled, I couldn't stand up, and I felt like my heart was beating uncontrollably fast. I lost my sight as well multiple times during the episode. I honestly thought I was going to die. I went straight to the hospital and was admitted for a tachy-brady like syndrome, hypovolemia, low BP and severe orthostatic intolerance. My heart rate swung from the 30s to the 160s and my blood pressure dropped drastically on standing. In the hospital had the same episodes, but also shook uncontrollably and my limbs turned very blue.

This again resolved, with a 3 week hospital stay and bedrest.

I had thought it was an isolated incident until just recently. At the end of February I had the first of many episodes. I was again admitted to the hospital for three weeks. The difference this time is that I did not have bradycardia or low blood pressure all the time. My blood pressure
drops often, but actually will become hypertensive as well.

I was only 2 weeks ago told I likely have POTS/OI. It's currently unclear whether it is secondary, but we believe it is.

I agree that POTS is definitely an element in what is going on.

I really am struggling though, since many of my symptoms occur when I am just lying down. I would like to know if anyone has any avenues or ideas or support for this kind of thing. I feel really alone and lost. I don't know what I should ask my doctor to investigate or how to deal with the symptoms until I can see an autonomic specialist and start treatment.

My mum and I have tossed ideas back and forth....mast cell disorder, catecholamine disorder, pheochromocytoma, various genetic disorders.

Nothing seems to add up completely.

My symptoms are currently:
-Dizziness with vertigo (feels like the room is 'breathing')
-Fatigue
-Temperature fluctuations
-Episodes lying down (paraesthesia in face, arms, legs, torso; severe dizziness; tachycardia from 110 - 150; blood pressure fluctuations (from 90/60s to 150/90s); feeling of doom; vertigo (occasionally); short of breath; palpitations)
-Tachycardia (120 to 190 standing) and OI (low as 81/50 standing),
-Tachycardia lying/sitting w/o episodes
-'Episodes' occurring upon standing
-Various gastro issues (nausea, diarrhoea, constipation, bloating)
-Abdominal pain
-Excessive urination (with lots of salt in it!)
-Electrolyte imbalances
-Hypovolemia (I get significantly hypovolemic in 3 days or less, originally it was under 24 hours until I needed IV fluids)
-Reynaud's/blue feet and hands
-Tremors/shaking
-Urge to faint
-Extreme fatigue and brain fog

I have had a normal MRI and EMG, EKG shows nothing serious (electrolyte imbalance and sinus tachycardia), no arrhythmia other than the tachycardia.

Sorry for the novel!!!!
I would just like to know if this sounds like a dysautonomia/POTS to anyone.....or if anyone else has had a similar experience....support would be awesome. This has thrown me for a loop. I am fighting back but it's VERY difficult.

Thanks!


EDIT: Forgot to add!
I have been on Florinef and salt tablets with little result. I get hypovolemic more slowly (3 days versus under 24 hours), but it has not affected my other symptoms.

 

[Sushi]

@PrPSc

First, welcome to the forum!

I also had fairly mild dysautonomia symptoms for much of my life but it only became severe in 2006, then the rest of the ME symptoms followed. I first went to a great autonomic specialist and did get symptom relief from medications.

But then I wanted to go for causes and started digging deeper. Through seeing an ME specialist I discovered a lot of abnormalities in my immune system, my gut, a big load of pathogens...as well as dysautonomia.

From what you describe -- frequent urination, hypovolemia -- you may well have diabetes insipidus (not diabetes) which is also secondary and can resolve with appropriate treatment--mine did. It seems to be caused by the HPA axis. All my symptoms have improved with treatment for pathogens, the immune system and the gut.

My suggestion would be that you look for a very good doctor, and having gone the route of an autonomic specialist myself, I'd personally look for an ME specialist. This would mean traveling unless you just happen to have one of them living next door!

You are relatively early in the acute stage of whatever illness this is--and this means that you have a very good chance of getting a whole lot better and maybe even well.

You'll find a lot of information and experience here.

Wishing you the best,
Sushi

 

[taniaaust1]

I suggest to not allow anyone to label you ME or CFS as your symptoms could be all just dysautonomia (or something else) and dysautonomia and the low blood volume would would cover ALL your symptoms! From your post (unless you have other symptoms you didnt mention) I dont think you have ME or CFS.
.........

Excessive urination (with lots of salt in it!)

Were you taking added salt at that time? Im curious as many of us with dysautonomia have low salt due to the extra fluid we need to drink.

If you have POTS, it would probably be the hyperadrenalgic kind you have (along with having the low blood volume kind too if you have low blood volume).. and hence hyper POTS would be making your BP go up and swing far more seeing you also have the low BP.

How did they come to the conclusion that you have low blood volume?

Episodes lying down

Episodes starting up when you are laying down I find a bit strange. In dysautonomia with POTS and other OI dysautonomias (unless its something like pure autonomic failure) one gets a lot more symptoms when upright or standing. Those who have very bad POTS can have symptoms and POTS happening (with higher heart rate) when laying too but I wouldnt have thought that you'd get an episode starting up when laying down unless you have something else going on. Anyway..that makes me wonder what is going on in your case as its unusual even for dysautonomia.

I think you certainly need tilt table testing done! You do not sound like a typical POT patient who also has hyper POTS and low BP drops, thou you could have this but without tilt table testing.. who knows.

Im also curious about what has made your doctor or you come to the conclusion that the dysautonomia is secondary to something else? when your symptoms all can by dysautonomia and low blood volume ones. Anyway.. first step for you would be getting yourself a tilt table test done to be more sure what is going on here.

Your case is interesting. Do you know if your adrenaline or noradrenaline is abnormally high? (that happens in hyper POTS and is what is responsible for the BP going up in response to standing/being upright). Note once its gone up, I find it can take up to a couple of hours to go back down as the adrenaline/nor adrenaline seems to stay high in the system for a while before its cleared (so likely that a heart rate could remain high for the same reason. Im on Clonidine along with Florinef.

Clonidine is a BP lowering drug which works differently to other BP drugs as it works by lowering the noradrenaline..so can help to balance BP in this way. (so it hasnt been an issue for my low BP drops).

What dose Florinef did you try? (some doctors Ive found dont prescribe enough as this drug can scare them due to how it can affect potassium). How much salt were you taking with it? My GP who has an interest in POTS only would prescribe for me 25% of the amount the hospital has told me to take up to, due to the severity of how dehydrated I get which started to affect my kidneys.

If possible (some cant tollerate) you also should also be wearing medical compression stockings if one has POTS of the right compression for this disorder. Were you wearing these? Compression stockings, increasing fluid and salt are first line treatment to which then other treatments are usually added to if needed.

Anyway.. I suggest not to jump the boat one could say and make sure you do actually have POTS before trying to treat yourself for this. (there is specific ways that this is diagnosed).

...
I was getting (well I still do but now where near as bad) low BP when laying and the low blood volume was causing be to have to sleep with my head and part of my upper body, hanging off of the bed so I could keep getting enough blood to my head.. (otherwise I'd end up too dizzy and nauseus and like I was going to faint in bed and think I may of fainted on a few occassions while in bed (a couple of 24hr BP montiorings showed my heart rate going extremely low when I was either resting or bed or asleep).

 

[Sushi]

@taniaaust1 @PrPSc

Just a note: I relate my "lying down" symptoms to ME, though dysautonomia is often part of ME so it is often hard to separate them.

Best,
Sushi

 

[PrPSc]

@Sushi
Thank you for the welcome

I was tested for diabetes insipidus, but no dice!

Thank you for the suggestion of looking for an ME specialist. I honestly wouldn't have thought of that (I have a long list of other specialists to see...). I will mention that to my GP.
I have an appointment pending for the Cleveland Clinic, and a consult with an POTS specialist only a few hours away within the month. My concern is that he is really only experienced with POTS and a few rare neuromuscular disorders, not the rest of the autonomic spectrum.

@taniaaust1

Nice to meet you

I assumed that many of my symptoms were from the low blood volume paired with the dysautonomia, but strangely enough only my tachycardia and BP resolves with IV fluid. The other symptoms still remain.

I was not taking extra salt at the time. Once they added the salt in my urine was nearly opaque...they figured I had a severe kidney infection. It was only salt and potassium, luckily!
The nurse remarked she had rarely seen a sample that ugly.

I get some interesting electrolyte imbalances from all the water I drink. I really have no choice but to go to the ER as they have to give me electrolyte solutions and supplements often. Sports drinks help a bit, but not enough.

I am hopeful that the specialist will help with diagnosing the 'type' I have. I will be sure to mention hyperadrenergic type to them.

I was diagnosed with hypovolemia by ultrasound originally. I was diagnosed with blood tests and symptoms the second time around.

The specialist does TTT! I hope that sheds some light on this.

They believe that it is secondary due to my seemingly random presentation. I have a lot of randomly abnormal tests and symptoms that are atypical. They seem to point to a cause, but it's something that is still unknown.

I am awaiting the adrenaline/noradrenaline results. My GP recommended that.

The doctors were very conservative with medication. They considered a beta blocker and BP medication with the Florinef, but decided against it due to my vital sign fluctuations and age.

I was on 0.2 for the Florinef, but it caused a lot of side effects and little relief for the month I was taking it. I was recommended to raise it to 0.4 by the specialist (he was trying to help me until I could see him in the office), but with all my side effects it was deemed a bad idea. I get severe bloating and kick out a large amount of potassium. On 0.2, I can get low enough to cause bad symptoms in an afternoon if I don't take enough of a potassium supplement.

I tried all three of those. The fluid and salt helps with some of the tachycardia and BP, but the compression stockings did nothing for me.

The last part is interesting!
That sounds like me (right now, actually).

I'm wondering how you all had the ME diagnosed? And does it perhaps mimic any other disorders/syndromes that you know of? I'd like to bring that up with the specialist and my GP. I looked it up and it does match with a bunch of what I have been experiencing.

Thanks again to both of you!

 

[Sushi]

@PrPSc

ME is hard to diagnose and shares symptoms with other illnesses. For the most up-to-date definition of it look here:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

It is unlikely that your GP would know much of anything about it. If he/she did, it would border on miraculous! Unfortunately there are few doctors across the spectrum of specialties who are good at diagnosing and treating neuro-immune and autonomic illnesses.

I hope you have a good experience at the Cleveland Clinic. I've heard that there are a few doctors there who are knowledgeable on testing for and treating autonomic dysfunction--if you can get patient recommendations that might help steer you to someone good.

Do you know POTSplace.com (http://potsplace.com/) and the dinet forum?

http://forums.dinet.org/index.php?/forum/4-dinet-forums/

They probably have the most dysautonomia patients of any forum.

Best,
Sushi

 

[Sea]

@PrPSc welcome.

The name and criteria for POTS focus on symptoms when upright. Most of the documentation I have read about POTS does however acknowledge that the symptoms can be there while lying down too, they're just not part of the diagnostic process

 

[justy]

Has EDS or another connective tissue disorder been considered. Good luck with your search for treatment

Justy.x

 

[taniaaust1]

I was tested for diabetes insipidus, but no dice!

That's good, I was wondering if you could have that too. Sounds like you've had a decent doctor to think to rule that out as most dont.

I have an appointment pending for the Cleveland Clinic, and a consult with an POTS specialist only a few hours away within the month. My concern is that he is really only experienced with POTS and a few rare neuromuscular disorders, not the rest of the autonomic spectrum.

That's great that you have an appointment for a POTS specialist coming up.

I get some interesting electrolyte imbalances from all the water I drink. I really have no choice but to go to the ER as they have to give me electrolyte solutions and supplements often.

That's to be expected if you are are drinking water and not electrolyte formulas all the time. Get yourself some electrolyte formula to drink. iherb has a fairly check one.

Sports drinks help a bit, but not enough.

Yeah.. I know about that one. I was on sports drinks for the first year I was aware I had POTS, I still had it bad thou they did help. I'd like to warn you about those.. after a year of drinking a lot of sports drink my teeth had FIVE holes (the only holes I'd ever had before this was one for each pregnancy) and my teeth .. those sports drinks will ruin your teeth sooner or later!! (they also have acids in them which eat away the teeth on top of all that sugar ..so damaged all my teeth enamel too making it very thin, so now Im meant to have 6 mthly dental checkups). Those who have low blood volume and dysautonomia.. often have drier mouths then normal people so dont have as saliva to protect the teeth either.

I was diagnosed with hypovolemia by ultrasound originally. I was diagnosed with blood tests and symptoms the second time around.

That's very interesting as Id been told that they only test for that in research studies and there wasnt tests for it elsewhere. Can you share what blood test it was? thanks. (or was it by a kidney test which just showed up dehydration?).

The specialist does TTT! I hope that sheds some light on this.

that's great.

They believe that it is secondary due to my seemingly random presentation. I have a lot of randomly abnormal tests and symptoms that are atypical.

Maybe we could share more possible light onto your case if you wish to share exactly what the abnormal tests were. There are many well known abnormalities in ME.

I am awaiting the adrenaline/noradrenaline results. My GP recommended that.

that's good. Wow you do have decent doctors (it took over 10 years for a doctor to give me that test).

The doctors were very conservative with medication. They considered a beta blocker and BP medication with the Florinef, but decided against it due to my vital sign fluctuations and age.

yeah that is understandable when they are confused by what is going on.

I was on 0.2 for the Florinef, but it caused a lot of side effects and little relief for the month I was taking it. I was recommended to raise it to 0.4 by the specialist (he was trying to help me until I could see him in the office), but with all my side effects it was deemed a bad idea. I get severe bloating and kick out a large amount of potassium. On 0.2, I can get low enough to cause bad symptoms in an afternoon if I don't take enough of a potassium supplement.

That is actually exactly the same recommendation the hospital gave me.. to raise it up to 0.4 if needed. Those who are taking this should be taking potassium too (thou that seems to be something my own not too smart doctors dont know, not one of them has told me to do that.. thou I did have a doctor who used to do blood test me at each half a pill level rise for my potassium levels). Yeah sounds like a bad idea with severe bloating. I hope something is found for you which works better

I tried all three of those. The fluid and salt helps with some of the tachycardia and BP, but the compression stockings did nothing for me.

Sorry to hear that the compression stockings didnt help in combo with all the other things. They actually dont help me much either..only about a 15% improvement but for me as my POTS is so severe, that's something.

I'm wondering how you all had the ME diagnosed? And does it perhaps mimic any other disorders/syndromes that you know of? I'd like to bring that up with the specialist and my GP. I looked it up and it does match with a bunch of what I have been experiencing.

Thanks again to both of you!

I suggest not to bring up ME as many doctors consider that to be CFS and 85% of doctors out there believe CFS has a mental health component so it can stop doctors from taking you and your problems seriously which is the last thing you need if you have severe dysautonomia and possibly all your issues are dysautonomia . So I wouldnt bring up ME until you can be sure they arent. Get everything else ruled out first (many doctors will stop wanting to test once you have a ME/CFS diagnoses). I'd be very interested to hear what abnormal tests you have had.. to see if they match ME abnormaltiies or not).

ME or CFS is diagnosed purely just on symptoms alone and not by tests (thou there are testable abnormalities which can help confirm to oneself that it is probably the correct diagnoses). Cause diagnoses is based on just symptoms alone, this means that many who do not have ME/CFS get this diagnoses wrongly!!. (One ME specialist has found that over half of the people with this diagnoses (60%?) have been given a wrong diagnoses).

For a list of abnormalities often found in ME (your salt issue is strange for it), there is a good list "Test for ME/CFS abnormalities" at http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (page 24 or 18 in that document)

Another thing which can help distinguish ME from just dysautonomia is with ME there is a delayed reaction to exercise/doing activities.. if you have dysautonomia you will get immediate effects on being upright and immediately after... if you have ME thou there is a post exertional delay being a big symptoms hit.. often 24-48 hrs later (sometimes sooner.. but anyway. a delayed reaction to activities).

(there is a bit of a catch to this thou if you have severe dysautonomia as in some people with this it can stop one from being able to exert enough to cause a very obvious ME delayed crash, this is often the case for me as my dysautonomia is so severe and the very quickly happening POTS crash prevents me from being able to do much in the way of physical activities).

ME causes far more issues then autonomic dysfunction issues (which in themselves can give a huge range of symptoms).. in ME there is immune dysfunctions (not always noticable on standard blood tests) and hormonal issues and other problems not covered by dysautonomia

ME/CFS is a diagnoses automatically given when doctors cant find another cause, its a diagnoses of exclusion. Its also best given by a good ME/CFS doctor who is aware of things which may present similarly (unfortunately there is only a handful of these about if you are in America and the situation is even worst if you are in another country!). Its kind of up to the person themselves usually to make sure their doctors have tested them for everything as most doctors are lax and dont bother.

 

[Sushi]

@taniaaust1 said:

ME or CFS is diagnosed purely just on symptoms alone and not by tests (thou there are testable abnormalities which can help confirm to oneself that it is probably the correct diagnoses). Cause diagnoses is based on just symptoms alone, this means that many who do not have ME/CFS get this diagnoses wrongly!!. (One ME specialist has found that over half of the people with this diagnoses (60%?) have been given a wrong diagnoses).

This is not true everywhere. I was diagnosed both by symptoms plus a whole range of lab tests that showed abnormalities that were typical of ME. Without the labs, my doctor would not have diagnosed me.

I realize that such tests are not widely available, but there are tests, when looked at together, that indicate that ME is the most likely diagnosis. And, soon there will likely be widely accepted markers that can be tested for.

Best,
Sushi

 

[PrPSc]

@Sushi

My GP does know a bunch about ME and CFS, but not enough to help at this point. I am looking into specialists.

I knew of DINET, not the other site.
Thank you for the links! They're extremely helpful.

@justy
It's been mentioned - I will have to remember to mention that when seeing the specialists. The admitting doctor for my most recent hospitalisation thought I might have a type of connective tissue disorder.

@taniaaust1
I have been trying the electrolyte drinks per recommendation from the hospital. I do hope it helps with the Florinef and supplements. It wasn't before, but I do have the other meds now to keep the hypovolemia in check.

My abnormal blood test results were
(I've put an asterisk besides the results that have been similar in both hospitalisations)
-Low sodium & potassium, high chloride *
-High ESR *
-Low haemoglobin, low MPV, low platelet count, low RBCs *
-Hyperglycaemia at points (not majorly high, and I was told it could be irrelevant)
-Low creatinine
-Low alkaline phosphatase and serum total protein
-A few low hormones (LH and another, which I cannot recall) *
-High IgE (5000+ when normal is marked at 300) *
-Low BUN to creatinine ratio *

My urine tests showed
-High cortisol
-High sodium output, suspected potassium "dumping" *
-High volume (4 - 4.9 L, very concentrated)
-Putting out 500ml - 1500ml more than input *

Thanks for the heads up. My GP is a saint so I will bring it up with her alone, hopefully she can help me further. I definitely don't need any more MI labels assigned....

I definitely do not have a delayed reaction. Within 15 seconds of standing my HR is up in the 130s, if I walk to the bathroom I get so dizzy I have to use the walls/a walker as support. Just walking is such a strain on my body I am sleeping on the couch after a 5 minute walk. It may be the severe dysautonomia as you mentioned.

It is interesting that you mention a crash though, as it feels like that my symptoms are the result of my life becoming stressful or hectic. Both times I have had to be very active or have been stressed and have then gotten this stomach virus. It has been one of the consistent things.

I definitely am very medically aware and have pushed for tests that the doctors thought might not show results - a few times they have (ESR, cortisol, IgE), and I am hopeful that those will help in the long run. I don't want to be too pushy though!

Thanks again


EDIT: I missed a point! The downside of a smartphone.

I was diagnosed with hypovolemia through
-Ultrasound/echo, it showed that my veins had low volume
-Blood tests for dehydration plus an exam with a few weird tests

 

[Sushi]

@Sushi
My GP does know a bunch about ME and CFS, but not enough to help at this point. I am looking into specialists.

...@justy
...The admitting doctor for my most recent hospitalisation thought I might have a type of connective tissue disorder....

It is great that your GP is so aware--few are--I'm glad for you.

And, a significant percentage of us have some form of connective tissue disorder--often Ehlers-Danlos--which I also have. It is associated both with dysautonomia and ME. There is a section of this forum that discussing it.

Sounds like you are getting some good medical care.

Sushi

 

[PrPSc]

Stopping by to update!

The specialist was not as helpful as I hoped, he really only knew about POTS and not the supine positions. He told me to keep doing what I had been doing for the POTS, replaced my Florinef with Midodrine, added in some more exercise therapy, and sent me on my way. I have no insight into the cause or my atypical symptoms. Unfortunately that means my dizzy spells and resting tachycardia have been unresolved.

After the appointment my symptoms have only worsened. I have started waking up every 10 to 40 minutes at night, getting nauseated to the point I cannot eat regularly, and having 2-3 severe and 7+ minor dizzy episodes per day. Despite fluids and potassium I still am always hypokalemic and have symptoms of hypovolemia very often. My hypertensive episodes have been more frequent and are now followed by hypotension (171/144 to 78/50). I can barely walk again, despite doing exercise therapy as was recommended.

I am pursuing further answers at the moment. I hope this gets figured out soon, it's extremely difficult to live like this. I'll keep this updated, I hope if someone else has these problems it'll be of some help

 

[Sushi]

@PrPSc

Are you trying the midodrine yet? It can cause symptoms itself. It is great for some, was awful for me.

Best,
Sushi