Positional Anxiety And Shortness Of Breath Desperate For Help !!!

[DadOf2]

I have been hospitalized 4 times in the last two months. 2 times to Medicine and 2 times now to a Psych Ward. The medical admissions were for further workup as I was having low grade fevers and small white counts, like 15K, but I just complained of feeling ill. I was tested for everything and everything comes back negative. Still being told it's POTS and Dysautonomia.

My Anxiety is now off the charts and when I stand up or walk, it goes away for the most part, but when I sit down, it hits me so strong.

The shortness of breath is acting similar. When I sit down, I start gasping for air, but when I stand up, it goes away.

I can't live like this and everyone thinks I'm crazy and that this is all Psychosomatic.

My heart rate is ranging from the 70's sitting to 130 standing. I can't stand for long or I get short of breath too, but the worn out kind, not like the kind I'm getting when I'm sitting.

My blood pressure barely moves when going from sitting to standing, which is a bit different then when I had my Tilt Table test. Blood pressure is like 110's/70's.

Here is yet another weird symptom, when I change positions, I feel like I am going to cry. I can feel something in the front part of my head that goes with crying, but really nothing to cry about.

I was started on Effexor, but had to stop on day 4 as it made me deathly sick, something else, no one could believe. I tried Cymbalta, same thing.

Klonopin and Xanax just make me yawn and feel tired. I feel an underlying feeling of being sick with this whole thing. I'm on a Beta Blocker (Propanolol) other than the Benzos. Benadryl sometimes gives me relief over the Benzos and this doesn't make any sense either.

Can someone shed some light as to what is going on with me. Prior to the onset of this I was working as an account supervisor, working 40 hours per week. I never had any problems with either Anxiety or depression.

Amazingly, I crash at 8pm and am sleeping almost 12 hours. I am fatigued as can be after sleeping this long, but only can't wait until 8pm again, as the agony of my day is just ridiculous.

I can't do anything with my kids and this is crushing me. My wife is ready to divorce me. My life has been turned upside down. All of this feels like it's neurological to me, but I can't find a Dr. that will give any of the above any Merritt. Symptoms are so bad that I can't even sit and enjoy a simple TV program.

Again, I am told this is POTS and Dysautonomia.

Thanks in advance,

Dustin

[potsgirl]

Devin,

All of this could be related to anxiety/depression if you haven't actually been diagnosed with POTS or some form of dysautonomia yet. What are your diagnoses? I know it's a cardinal sin to say it could be psychological, but I'm saying it may be that you have a form of dysautonomia where anxiety is a main component. Some people on the forum do. Please let us know what you've been diagnosed with so far, and we can help you out more.

I'm so sorry you're suffering so much with this. Things will get better for you, sometimes it just takes a little while. Hang in there!

Jana

[DadOf2]

I have both the POTS and Dysautonomia Diagnosis.

Dustin

[erikainorlando]

I know that for me there has definatley been an emotional componenet to this illness as well. I think I read somewherre that this is true as well. How could there not be...I mean given the hr and BP bing so relatedt o feelings of anxiety or for me it is more a feeling of agitation. I used to get so agitated and just not know why.....but I also really really tried to keep my mouth shut during those times!!

I think it is realted to the excess neurotransmitters in our system. Extra epinephrine or norepinehrine...somthing like that. I really have been so much more even since starting Zoloft even tho I don't think I am normally depressed...I just really think POTS can throw off neurotransmitters that can affect us emotionally....along with all the havoc that being chronically ill can make us feel.

I hae shortness of breath etc....on movement...I am so ill from going to the grocewry store at this point today!! So hang in there!

Erika

[prettyinpink]

Some insurances will pay for you to see a psychologist who specializes in biofeedback. While i dont know what causes the anxiety biofeedback might be VERY beneficial to you. I did biofeedback for a while before I found out about POTS. If you don't know what biofeedback is i can explain more as can others.

[lissy]

Sorry for what your dealing with...I have a few questions did they DX with Dysautonomia and also POTS or is that one DX? Secondly how long have you been ill ?( if it just began I can relate to the emotional instability and I had alot of anxiety to start with that would just happen with no trigger just spontaneously but it has calmed down alot. I was in that state for a few months and it gradually got weaker.

I have small children that I take care of 24/7 and I can't do much with them either , You have to try to have a positive outlook at least your still here ....you know what I'm saying.About the wife well sorry to say "through sickness and health" people don't seem to take to seriously I guess. I understand the strain chronic illness puts on relationships but when the relationship starts affecting your health you have to keep your pride and tell yourself and maybe her somethings aren't meant to be. Don't let someone drag you down this condition is enough to deal with. *****Unless she's willing to seek help.

Lissy

[erik]

This sounds horrible. As best I can imagine, you are being hit with severe anxiety both physiological and situational (either of which is more than bad enough), but also with direct shots to an emotional pain center in the brain (or at least the "response" part). The docs have to keep looking for something...

I am not sure what it takes to convince a neurologist to consider it, but simple-partial seizure might be part of the picture here. Obviously I'm not a doc or in a position really know the best approach but have the docs given this a consideration?

This is from a kids site, but it has an eye catching phrase given how much POTS/dysautonomia can rapidly tamper with our cerebral blood flow:

In addition, anything that results in a sudden lack of oxygen to the brain can cause a seizure.

It seems like several things could be lowering your seizure threshold... overlayed with spotty blood flow from the dysautonomia. Sometimes infection can be involved with seizures. While benzos tend to suppress generalized seizures, they can lower threshold as they wear off (and also don't tend to address simple partial seizures as well). There are different meds that are said to have better luck against that sort of seizure. Sometimes they can't see a seizure on EEG (especially the simple-partial sort) and they just try the meds to see if they help... or I guess some places will try more specialized scanning.

[sue1234]

I don't know--being that it happens so suddenly when sitting, have they done an MRI or CT scan to see if there is something physical that could be causing your short of breath problem? It sounds like when you sit, your body is crying out that something is not getting oxygen or blood flow, or something important! With a slight fever, have you had your thyroid levels checked to see if you might have hyperthyroid?

[erik]

I know that for me there has definatley been an emotional componenet to this illness as well.

......

I think it is realted to the excess neurotransmitters in our system.

Just want to second Erika's points. I think this is dead on. I agree the natural emotional toll/burden is inevitable and often timed at the worst moments when our bodies are soo off kilter from the physical assaults. The docs have got to keep after the autonomic stuff, and maybe something like chronic illness counseling could help, especially if it were done as a family thing where a counselor assisted both you and the family to all contribute productively to the situation. A psychologist seeing the POTS & dysautonomia diagnoses should not be out to replace them with a psychosomatic explanation, but simply to help with the inevitable challenges that come with it.

[dsdmom]

Dustin

I'm so sorry you're having such a hard time. What you describe sounds an awful lot like CFS - chronic fatigue syndrome - which can often go hand in hand with dysautonomia. In fact, orthostatic intolerance is a key symptom to many CFS patients. You describe feeling 'ill' - something I feel often, and is part of CFS. Unfortunately there's no cure for CFS and most doctor wont' take you seriously. however, there ARE doctors out there that are educated and understand the science behind it (what science has been discovered so far, that is). I would recommend trying to find a doctor who specializes in CFS.

Good luck.

[Mrs. Burschman]

Dustin,

DON'T LET ANYONE TELL YOU IT'S ALL IN YOUR HEAD. I spent a week in the psych ward for what even I thought was extreme anxiety. For some reason, I guess I didn't think it was weird that my "panic attacks" got better when I laid down.

Spent years in counseling afterward, trying to figure out where all the terrible anxiety was coming from. Until I finally put it all together. "Anxiety" does not cause you to black out going up stairs or cause your heart to rise to 160 when you stand up. I got the POTS diagnosis after a positive TTT.

The tough thing about the autonomic nervous system is that it's kind of at the intersection of body and mind. But most likely, there is absolutely nothing wrong with your mind. Although dealing with POTS is enough to drive anyone insane.

You are not crazy. What you're dealing with is real. And it bites. But we're all here to help.

Amy (Mrs. Burschman)

[EarthMother]

{{{gentle hugs}}}}

Deep breath. In ..... and out ......

That was for ME! LOL I have to remind myself to BREATHE otherwise the positional panic symptoms get way out of hand. :-)

Did you know there are actually some really strange studies on Orthostatically induced panic attacks

http://www.sciencedirect.com/science?_ob=A...9773ef1ac046941

I also have POTS and for me panic is part of the total package. My therapists have all said that my anxiety symptoms were "organic" -- meaning that they stem from the physical sensations of the illness. But as you well know ... KNOWING this on a cognitive doesn't make them magically go away. The work I do now to try and "manage" my body sensations better from a mental standpoint is a type of therapy called Somatic Experiencing. It has helped, but like everything else it is not a magic bullet fix.

For me I have to remind myself all day long ... what I am doing and that -- I HAVE POTS! I know you'd think we could never forget but sometimes when my brain is deprived of blood from standing too long, I begin to react to the body sensations (light headed, intense pain in my shoulders or back, contractions in my abs and the hot flushes) and my mind will go to a deeply rutted pattern of panic instead of simply solutiions like LIE DOWN YOU IDIOT!! :-) Even tonight, I had made a wonderful meal for my family and as I began to eat I started to have trouble swallowing, my concentration was difficult and I felt off balance for lack of a more accurate description. I took a cup of tea up to my bedroom and was in tears with how sick I was feeling before I remembered that I had been standing up too long with dinner preparations and that the swallowing issues and waves of heat etc. would all pass if I put my feet up for a while. And of course they did, because this is how my body works.

I was fortunate that my friend came upstairs, who knows I have POTS and understands how it works. She saw that I was tearful and she was able to remind me ... "You know, you probably have a whole bunch of thoughts running around in your head right now. But remember its just a bio-chemical reaction and they don't mean anything. When the reaction is finished they will go away too. None of it is real." And she was right, I knew she was right of course, but it was still nice to hear it validated from someone on the outside.

So feel validated that you are not alone and you are not crazy.

Deep breath ... (just reminding myself again!)

~EM

[ramakentesh]

I can relate - at one stage I was anxious 24/7 for about ten days when I had a really bad relapse. the anxiety is worsened by quiet standing or sitting and its caused by your body attempting to use epinephrine/adrenaline to correct the underlying circulatury abnormalities that are cardinal problems in POTS.

It can also be caused by excessive beta receptor stimulation by either excessive amounts of norepinephrine in plasma or beta receptor antibodies stimulating these receptors.

Either way its the most debilitating symptom and it seems more common in males - Ive spoken to maybe four or so males with POTS that report this as their worse symptom.

Its totally impossible to relax and you cant really do much.

its important to note that these mechanisms are measurably different from panic disorder. In Panic disorder there is an increase in serotonin in the brain whereas in POTS the opposite appears to happen. It also quite different from GAD as GAD isnt worsened by posture for a start.

My advice is to go to a good POTS specialist - many out there have very little clue to be honest. Try get in to see Grubb.

Second get a betablocker like inderal - knocked this symptom for dead for me, but it made my dizziness worse - I had to ride out the anxiety before tapering off the BB so I could stand for long periods.

It will improve, although its hard to believe it at times!

Dustin

I'm so sorry you're having such a hard time. What you describe sounds an awful lot like CFS - chronic fatigue syndrome - which can often go hand in hand with dysautonomia. In fact, orthostatic intolerance is a key symptom to many CFS patients. You describe feeling 'ill' - something I feel often, and is part of CFS. Unfortunately there's no cure for CFS and most doctor wont' take you seriously. however, there ARE doctors out there that are educated and understand the science behind it (what science has been discovered so far, that is). I would recommend trying to find a doctor who specializes in CFS.

In what way? Where is anxiety a cardinal symptom of CFS? CFS and POTS/OI are related to the point where they will probably be found to be the same illness. Every young CFS patient examined by Dr Stewart had signs of OI as their principle problem. Most CFS patients examined by Dr Bell had low blood volume and either POTS or NMH

[ramakentesh]

Postural hypocapnia also causes anxiety.

[erik]

Could the fact that the symptoms are atypical be a clue that the treatment approach might need to be adjusted from that for standard POTS to more of a customized general dysautonomia? Your anxiety & breathing troubles are associated more with sitting rather than standing... whereas the typical presentation in POTS is to be relieved by going supine. I think you need an autonomic expert to give a fresh look. Applying the standard presumptions about POTS mechanisms might be a mistake here... the generalized dysautonomia complicates things. I'm afraid I don't know much about how to get doctors attention promptly... I've just taken a slow progress approach but you need someone to revise your treatment plan pronto.

On the Benadryl, there are others here that get relief from anti-histamines either with or without a known explanation. Maybe the fact that it helps you can spawn some thoughts for additional treatment options?

I don't have any profound words of wisdom but I know the pain of watching a life crumble and having those that should support you fall away or end up piling on instead. It was like waking up in a demented horror film and helplessly knowing what was coming. I pray that they can come around to understanding your diagnosis properly and gain insight & strength so as to contribute positively to this difficult situation. The treatment and support is not yet up to par, but at least you have a diagnosis. A debilitation such as this is akin to traumatic experience... perhaps people need help "processing" it and being able to get from a hurtful state (from denial or overload or inability to handle their pain) to one where they can see what is really going on and how to help you. In the mean time, plenty of folks here can relate. I don't know a concrete next step... could there be a more specialized autonomic clinic you could get to?

[ramakentesh]

Postural anxiety and breathing problems are suggestive of normal flow pots with postural hypocapnia. It might sound crazy but breathing in a paper bag might actually help. Dont get this mixed up with hyperventilation, in some for of POTS the sudden baroreflex unloading causes this symptom.

[erik]

Awesome to see specifics!

Is the muscle-pump effect of moving about specifically helpful? If so, would a device to promote circulation be able to help (avoiding the exertion)? There are such devices for rehab purposes that might stimulate that pumping effect a bit.

+++ I hold my breath instinctively some times. Is that similar to the old bag trick?

Edited November 22, 2009 by Erik

[Tachy Phlegming]

I don't love writing responses to these threads because there is enough variability in peoples' symptoms that what works for some people really doesn't for others. But I'm responding because at my worst, I have been unable to sit or lie down at all because I couldn't breathe. I'm sure standing just kept my heart rate high (which worsened my breathing) but I had no way to get out of that vicious cycle.

Do you have any idea what trigger got you this sick in the first place? You'll need to avoid it. Are you heating the place where you live? If so, is that making you sicker?

You might try the bag and also a fan. I guess also drink a lot to get your heart rate down but when I was in that bad shape, I couldn't get my heart rate down no matter how much water I had after a few weeks. (My heart rate even went up when I ingested anything).

If I had that now, I'd use nicotine and I'm imagining I could breathe better (depending on whether I still had exposure to what got me sick in the first place -- if I did have ongoing exposure, no medication would make a difference).

I know what I look like in that state. I had to bring someone to my doctor's appointments to tell them that physiological factors were causing that delightful look of severe distress we can't avoid. When I didn't bring someone, I was exposed to unbelievable wrath and disgust. If they know what you have, it's a little surprising that they are behaving that way...

I don't know about the crying and the low-grade fever but if they think they've ruled out everything else, it sounds like other people on here have had those symptoms.

You might tell your family to just ignore whatever symptoms make them feel uncomfortable. It may take some time (a long time) for the symptoms to calm down. You can at least tell them to understand that whatever makes you sound like that is part of a physical disease and that as of now, nobody has figured out the right treatment so you have to remain in that state.

As far as meds, use what works and uh, well, I wouldn't use what doesn't work ... but you can ask your doctor. Did you get worse after starting any of the meds in particular?

[DadOf2]

Interesting Replies and I thank each and everyone of you.

Just a few more notes or should I say symptoms. I have noticed that also when I eat, sometimes, symptoms seem to exacerbate.

I have been battling terrible headaches since all of this started. I wouldn't call them migraines, but then again, I'm not sure what they feel like. These headaches usually start over the notches in the back of the skull. I get pressure sensations all over the head too.

My balance is also off. Not like I'm going to fall, but it feels like I'm on a boat in rocky waters where I'm bouncing around. This symptoms is always there but it varies in intensity.

The weird thing is that standing and walking around sometimes gets rid of symptoms, yet many symptoms can get worse while just sitting.

I don't think I have the pooling type of POTS. It certainly does feel like the Adrenaline type, maybe this is why my blood pressure holds steady. In fact, many time my lower legs, ankles, and feet feel cool.

Someone sent me a private message and said I should get tested for Lyme. Does anyone know anything about this ?

Thanks again,

Dustin

[dsdmom]

Raman,

If you read my response again, you'll see I don't mention anxiety, as I was merely addressing Dustin's fatigue/feeling 'ill' component. You, along with others, addressed his anxiety. So taken together, all of Dustin's concerns were addressed.

No need to lash out at others.

Dustin,

Tachy is right - what helps some people may not help others. This is a learning process - so the best thing you can do is learn as much as you can - about what people post here and figuring out what applies to you.

Good luck.

[potsgirl]

Sorry, I don't know much about Lyme but others here certainly do, and a search on the internet will bring you tons o' info. I just wanted to let you know that you're certainly not alone with the sleeping issue. I used to be an archaeologist running around the desert around the Grand Canyon all day. Very physical, demanding work. Now I can barely make it to 6 pm before I have to head upstairs, where I have to lie down in bed and read until I fall asleep around 7-8. I feel best if I can sleep until at least 5 or 6 (later would be better, but I can't seem to do it!) and I'm still tired/fatigued!

Have you tried sitting in a reclining position (the recliner is my BEST friend) or lying on the couch watching tv? That helps me a little. Also, it helps to put my feet up. I also get frequent headaches and this seems to help them, too. My balance is horrid, and so I can relate to many of your issues. I also take Paxil for my anxiety, which has helped me all around.

You're not alone by any means, and you have a lot of support here. I really hope you're feeling better soon, and that you can get your stress level down. Ever meditated? Sometimes that really helps me, too.

Best of luck, and positive thoughts,

Jana

[sue1234]

I had mentioned earlier a CT or MRI. I was thinking that it might be worth the effort so your doctor can look for a pheochromoctyoma, a tumor on the adrenal gland. Your b/p doesn't jump really high, but it doesn't necessarily have to. But your headaches are a sign, and it is known that compressing pheos will release catecholamines. Sitting and bending at the waist level will compress a pheo. And, of course, a release of catecholamines will trigger anxiety/panicky feelings.

[Tachy Phlegming]

I thought they considered or tested everyone for pheochromocytoma before months or years later diagnosing them with dysautonomia. Isn't pheochromocytoma more common?

[ramakentesh]

SORRY I didnt mean to come across that way - I was just wondering where you were coming from.

I thought they considered or tested everyone for pheochromocytoma before months or years later diagnosing them with dysautonomia. Isn't pheochromocytoma more common?

Definately worth getting checked out.

Thankfully, I think most of us - particularly the kind that present with the more hyper symptoms (postural jitteriness, anxiety, cold clammy feet and hands from vasospams) are checked for this nowdays by most specialists for Pheo. The similarities are pretty striking at times although not many Pheo patients faint.

According to the Vanderbilt Autonomic Centre Chronic Orthostatic Intolerance is the second most common circulatory disorder behind essential hypertension. The belief among some doctors is that these disorders are vastly under diagnosed and could be as common as 1 in every 200 people.

Lyme can cause immunological problems that resemble POTS and CFS in a small minority of patients but it is poorly understood - as an example is the state any different from normal OI or CFS? Is Lyme just another trigger?

I get a similar presentation from POTS at its very worst - apparently its common but not at the disablingly strong end of the scale.