I Think I Diagnosed Myself!

I have been off work for 4 years, with a variety of problems. I've seen a pain doctor who referred me to a respirologist and a cardiologist, and I've been through a huge number of tests. The outcome? I'm told that I'm a "medical mystery."

Tonight I decided to do some searching of all of my symptoms, and I found something that fits 95% of the symptoms that I have.

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Dysautonomia


I've indicated in red, all of my symptoms.

With dysautonomia, a person may become dizzy, lose her balance, faint, and experience various aches and pains. Other symptoms include fatigue to exhaustion, various chest pains, headaches, severe panic or anxiety attacks, tachycardia, hypotension, poor exercise tolerance, dizziness, sleep disorders, tinnitus, gastrointestinal symptoms (IBS), sweating, blurred vision, numbness and tingling, and depression.

Other secondary symptoms of MVPS/D include hot/cold sensations, heat/sun intolerance, shakiness, swelling in limbs, shortness of breath, excessive perspiration or inability to perspire, fibrocystic breast disorder, rashes, difficulty concentrating or poor memory, heightened sensitivity to smell or sound, temporomandibular joint dysfunction (TMJ), scoliosis, low body temperature, endometriosis, muscle aches, allergies, and excessive gas.

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You know the funny thing? I've been posting links and talking about this very thing for months now. I have a form of it.


http://ndrf.org/ is a wonderful and very informational site and forum. I've been a member for a few months.
http://www.potsplace.com/ Focuses more on POTS (postural orthostatic tachycardia syndrome), but does have great information and, again, a great forum - so check that part out, too.

Sadly due to comp issues I lost a ton of amazing links - links to a lot of Dr. Grub's papers and other research information from everything to NCS, POTS, mast cell activation, and even vagus nerve/digestive issue links or else I could share them with you....

I self diagnosed myself too - I was looking up information on hypermobility when I saw NCS and POTS mentioned. I can't resist reading up on anything that look interesting and was shocked when the symptoms matched what I've been going through for years (including GI problems) - I just thought I had low blood pressure and postural hypotension.
Further pressing my GP and getting an abnormal EKG landed me in the hospital where a cardiologist saw me the next day. I was lucky that he recognized my symptoms as NCS (also called vasovagal syncope) and scheduled me for a tilt table test - which I failed a couple weeks later. I'm still at a loss as to how I can get fully diagnosed as I'm certain that I have POTS, too.


Good luck as there's not many doctors who specialize in this area. The sites I linked to and the people on the forums may be able to help you find doctors. As a nurse you definitely know when something is wrong, so never let anyone tell you otherwise (if you read people's personal stories it's pretty sad how they're treated). You may also want to research CFS some as there are links.

Originally Posted by strange_wings

Good luck as there's not many doctors who specialize in this area. The sites I linked to and the people on the forums may be able to help you find doctors. As a nurse you definitely know when something is wrong, so never let anyone tell you otherwise (if you read people's personal stories it's pretty sad how they're treated). You may also want to research CFS some as there are links.

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Until the day I passed out while answering my door, and ended up breaking my foot, I swear that my doctors were of the opinion that I was faking it all. I had been falling in my shower/bathtub for months prior, and all the doctors did was to nod their heads and take my blood pressure. Over the months the pre-syncope episodes were getting progressively more frequent and worse to the point I actually fainted and hit my head and broke my foot. After that I had a couple of episodes while sitting on the exam table in the doctors office and he could visibly see that I was having an "episode" because he saw the colour drain from my head before I fell over on the table.

The referral to a pain clinic was such a blessing. I was waking up every hour with such horrid pain. It was deep pain that felt like it was inside my bones. She did a battery of blood tests and found that my Vitamin D level was nearly depleated, and put me on a high dose of Vitamin D twice a week for 6 months. Within a month my pain started to improve, and by six months I was nearly pain free. Now I'm on a daily maintenance dose for the rest of my life and am free of that deep pain that I was having. But I still have general "aches and pains" and "headaches" that I need to take a daily dose or more of Ibuprophen and often have to take 1 or 2 Tylenol #3 per day to manage.

For me the pre-syncope and intolerance to heat is the worse of all of it.

Wow, that's crazy that the doctors have been so useless! Can this condition be diagnosed through scans or blood tests? Will you ask your doctor about it?

Originally Posted by Natalie_ca

For me the pre-syncope and intolerance to heat is the worse of all of it.

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Well, consider yourself lucky that you live in Canada and not Oklahoma the heat here wipes me out, but at least there's no humidity.

Because my blood pressure is so low I take midodrine, a vasoconstrictor. It's helped my pre-syncope episodes a lot. I'm rarely falling now but as soon as the drug wears off (4 to 4 1/2 hour half-life) my heart rate climbs back up to 130+ and I start feeling terrible. Though some have no blood pressure issues or even high BP, and the near and full syncope is thought to be just due to poor circulation to the brain instead.

You're also lucky that you have no GI issues, many with dysautonomia do. Vitamin deficiencies seem to be common, too. And as far as it goes, I'm no where near as bad as many are - I can leave the house, work, stand up, and am not wheel chair bound. I suppose there's little things we should all be thankful for....




I don't know if you or anyone else watches this, but Discovery Health Channel had an episode of Mystery Diagnosis on a few months ago (and reran since) called "The Woman Who Kept Falling Down" - National Dysautonomia Research Foundation's founder Linda Smith's story. She was ultimately diagnosed at Vanderbilt (who does autonomic nervous system/orthostatic issues research for NASA) as having Orthostatic Intolerance.

Originally Posted by sarahp

Can this condition be diagnosed through scans or blood tests? Will you ask your doctor about it?

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No, it usually can't unless it's secondary to something else - Such as an autoimmune disorder or even Lyme disease. Most of the symptoms easily fit the descriptions of a panic attack, chronic fatigue syndrome, or even fibromyalgia . It takes a very smart doctor who looks for "zebras" or the patient actually connecting the dots to seek special treatment for most to get a proper diagnosis.
It's considered "rare", and as I mentioned few specialize in it as it covers many fields of medicine - cardiology, electrophysiology, neurology, gastrology, and so on.

I actually think another member here, StarryEyedTiGeR, should research dysautonomia as her various health issues can all link to it so easily including PCOS as hormone and the reproductive system can fall prey to autonomic nervous system problems....

I have high BP, but not high enough to warrant medication because it then makes my BP too low. I was on BP medication for over a year and my BP was sometimes 110/60 which is way too low for me. I felt more light headed than normal, and it's pretty bad when you have doctors at your work telling you to sit down so they can take your blood pressure because you look like crap!

I also have PCOS, and sleep apnea, both of which are also symptoms of this.

I've printed it out and the next time I see a doctor I'm taking it with me. It really does sound like this is the root of all my problems.

I don't have IBS, but I am lactose intolerant and that's gotten worse over time too. I used to be able to tolerate 1/2 cup of regular milk 4 times per day, but now I can't even have regular milk in my coffee because it upsets my stomach.

I read that with this a high salt diet is often recommended. Because of my high blood pressure I try to not use extra salt, but there are times when I know my body is low on sodium because I feel nauseated. If I have a bag of potato chips I feel better...my feet swell up but the nauseated feeling goes away.

For years my family doctor was giving me Lasix for the swelling in my lower legs and feet. It was so bad at one time that my ankles were the same size as my calfs and my feet were so swollen that I couldn't even buy a pair of winter boots because I couldn't get my foot inside any of them.

The pain clinic doctor finally told me to stop taking the Lasix regardless of what my family physician said, because it wasn't working. I could take 80mg and not pee for hours and hours. She said the problem with the swelling wasn't excess fluid, it was venous pooling of my blood and that exercise would help. But exercising is hard because my chest feels so tight like someone is sitting on it restricting my breathing, and I'm completely done in for the day afterwards. It's hard to keep doing something that you know is good for you, when it makes you feel awful while doing it, and even worse afterwards.

But I persevere. I need to get back to my job and I somehow have to overcome the exercise intolerance and fatigue. The CPAP machine I use at night has helped with the mental fog issue and I feel relatively rested when I wake up now.

So things have improved somewhat, but I've come to the conclusion that I'll have to learn to live with and manage the symptoms.

Oh, one of the symptoms is scoliosis. I don't have that, but I do have a benign form of spina bifida called "Occulata". My spinal cord is exposed in a few areas, but does not protrude outside the spinal column. I wonder if that plays a factor in this too.

Originally Posted by Natalie_ca

I read that with this a high salt diet is often recommended. Because of my high blood pressure I try to not use extra salt, but there are times when I know my body is low on sodium because I feel nauseated. If I have a bag of potato chips I feel better...my feet swell up but the nauseated feeling goes away.

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It depends. But if you've done much research yet you'll see that low blood pressure isn't the problem for everyone - low blood volume may not even effect some. There's one form of POTS called hyperadrenic, high catecholamine release (epinephrine and norepinephrine) is the cause for high heart rates and high or even labile BP.
While I don't suspect I have this form, at all, I'm sensitive to epi and drugs that cause increased norepinephrine release (I had to stop taking flexiril for my muscle spasms as it started making me very very ill) - the epi sensitivity is common..

I don't know what to tell you to do for the fatigue, the fact that you survived going to the gym says you do not have bad exercise intolerance but that you do have to ease yourself back into working. My guess is that you're not used to being on your feet and your body is making it's complaints known.

You could try wearing compression hose. I wear 30-40 knee highs when I have to work and they do help - at the very least they prevent some bruising in my legs and help heal the ones I do get. It is important that you get a pair that fit correctly, if you don't they either won't help or they'll compress too much.
Never let yourself get dehydrated. Force yourself to drink water if you have to and around 2+ liters a day. I'm sure you know the quick fix to get blood pressure up - drinking 16 ounces or so of water (over 15 minutes, isn't it?) - maybe that will work for you since your blood pressure is usually around normal. I haven't had it be much help for me, but my standing BP range (conscious) is anywhere from 70s/40s to 90s/50s.

Good luck with your doctor! The fact that there's not really much most doctors can or know how to measure for makes it hard to get through to them.

I just remembered something - aren't you on an antidepressant? If you are, which one and what dosage? As I'm sure you know, they can affect the nervous system. What other meds, and do any of them affect you adversely? (such as a rescue inhaler)

You never mentioned if you've had very thorough blood sugar and thyroid testing - hypoglycemia and thyroid issues both causing very similar symptoms to various dysautonomias.

Did you have any problems in your teens or twenties? For most, even if the acute onset isn't triggered till later, they'll still remember back to a few occasions when they got dizzy or even fainted.



I didn't remembered to ask this stuff till this morning while still in bed, a perfect example of what being upright does to my brain.

On a related note, last night a girl ask on another forum why she felt so bad and had tachycardia - that her doctors never explained anything and she already had a diagnoses of vasovagal syncope (NCS). I told her she needed to research the vasovagal syncope, that by doing so she'd find her answers - sad that doctors can't sit down and actually help explain to their patients what is going on. I didn't really get any explanations either, but I knew what I was dealing with already.

Originally Posted by strange_wings

I just remembered something - aren't you on an antidepressant? If you are, which one and what dosage? As I'm sure you know, they can affect the nervous system. What other meds, and do any of them affect you adversely? (such as a rescue inhaler)

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Yes, I'm on Celexa 30 mg every day. But I was on Celexa for a couple of years before all this started.

I also take "Combivent", but have been on that since 1996 or so. And actually, until this year thanks to my stupid neighbours and their Lysol spray, I hadn't needed to use it except for maybe 6 times a year for several years. Now I use it daily before I exercise because my breathing feels restricted on the treadmill.

You never mentioned if you've had very thorough blood sugar and thyroid testing - hypoglycemia and thyroid issues both causing very similar symptoms to various dysautonomias.

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My blood sugar and thyroid are fine. I am over weight and have polycystic ovary, so my body does have issues with insuln. But I know when I'm feeling light headed from hunger vs light headed and faint from "absolutely nothing".

Did you have any problems in your teens or twenties? For most, even if the acute onset isn't triggered till later, they'll still remember back to a few occasions when they got dizzy or even fainted.

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Nope. No issues of this kind until I ended up in the hospital with pneumonia and a collapsed lung in the summer of 2004. It started with intense left sided rib pain, that my doctor initially thought was a broken rib. But months later it continued, and he was at a loss. He suspected inflammation of the rib cartilage. But over time the pain was spreading. It eventually encompassed my entire left side from front to back. Then I started to have additional pain in my legs and feet...deep pain like in my bones. The Vitamin D helped with all of those issues including the left side rib issue.

The light headed and dizziness didn't start until a few months after I was discharged from the hospital.

The shortness of breath on minimal exertion, has been ongoing since I had pneumonia.

Oh ok, I couldn't remember if you were on an SSRI (which Celexa is) or a tricyclic which can cause some people problems. The reason I asked about the inhaler is that rescue inhalers are beta2 antagonist - if I, for example, where to take a puff of one it would make my heart race badly and could possibly cause me to faint as I am beta sensitive - many with dysautonomia and tachycardia are, and that is one reason why beta blockers help.

As for being able to tolerant things for years and why you may not be able to now, it's common in people with dysautonomia and CFS. I'm not sure if anyone knows why these things are suddenly rejected. It's bit like people suddenly developing allergies as an adult, who knows why? Chemical sensitivities are common - as are being overly sensitive to smells, lights, sounds, and anything else that can cause stress.

What is your blood pressure and heart rate doing while on the treadmill? If your heart rate is getting higher and your body doesn't like it that will cause chest tightness and shortness of breath - which would be unrelated to asthma and probably doesn't go away until you sit or lay down to rest.
Have you had a stress test? (...I'm sure I'd flunk one as I've even fallen on a treadmill before due to dizziness. I'm far from eager to ever step foot near a treadmill again. )

The problems with insulin could be enough to push everything else slightly out of balance too, obviously that needs to be under better control if it isn't now.


The pneumonia could be your trigger.
Have you found any Canadian doctors listed for testing autonomic issues yet? Recently, on the NDRF forum one Canadian member posted a link about how some who need very specialized treatment or an answer other than "live with it" have had to come to the US for specialists... I hope this won't be the case for you.
Your first step would just be to have your doctor check for postural hypotension or any fall at all - or better yet (if you don't have one) get a blood pressure cuff at home and take several readings in different positions, and when you feel symptomatic.