Could This Be Pots?

[Geode]

Hello,

I’m new here. I’ve been having problems for almost 16 years, have seen 7 doctors and 16 specialists, and they all say “I don’t know.” The last few years I’ve been going from forum to forum for different conditions, like the little bird asking “Are you my mother?” If you’re willing, please comment on how my symptoms line up (or don’t line up) with what POTS patients experience. In your opinion, would it be worth paying out-of-pocket to see a dysautonomia specialist? I understand this is a support forum, and comments will be taken as your opinions and not as medical advice, diagnosis, etc.

Before the birth of my only child almost 16 years ago, I was a very active person. I am very task-oriented, and had little patience for passive activities such as watching television. My husband used to say, “You need to learn how to relax.” After childbirth, I began experiencing periods of lethargy, which I chalked up to being a new mother. But instead of getting better as she slept through the night and got easier to take care of, it just got worse and more frequent.

After awhile, I also began having sudden episodes of more intense symptoms, usually right after meals. I would get this funny feeling in my brain like I’ve been drugged, then I feel extremely tired and have a hard time just sitting up, and my eyelids get so weak they droop completely closed. It feels like I am extremely sleepy, but I can’t fall asleep, and I don’t yawn like I do when I am actually sleepy. Sometimes my chest feels very heavy, and although I can breathe just fine and my SATS are good, the act of breathing feels exhausting. Sometimes my face gets droopy and I can’t smile. Sometimes I can’t propel my legs forward to walk. Sometimes it feels like someone is reaching in to my chest below my left breast and squeezing my heart. Sometimes I get very chilled and cannot warm up, even in an 80-degree house under blankets.

High-carb meals are more likely to cause an attack. Drinking dextrose for a GTT provoked a very big attack (I started to pass out first, lay down quickly, then went into an episode.) But carbs don’t do this consistently, and I also have very bad attacks on strict low-carb diets. Can’t pin it on a food allergy, don’t have a gluten problem. I think it may be the actual process of digestion, because I have video documentation of my eyelids starting to droop after drinking distilled water. Occasionally episodes are triggered by other things, such as climbing stairs, walking through sand, squatting, using my arms above my head, or (ahem, using the restroom)

I also developed facial redness in a butterfly pattern, and come-and-go GI problems: vomiting undigested food several hours after meals, abdominal bloating and belching, chronic diarrhea. I get involuntary muscle spasms and fasciculations, but 2 EMG’s were normal.

My problems fluctuate. Before I had to quit my job as a school music teacher, one day I would teach 6 periods of folk dancing without any problems. Another day, I would just walk down the hall to the office before school started and the secretaries would say, “What have you been doing? You’re out of breath. You look and sound like you just ran a mile.” I still have times of feeling “normal” but they just keep getting shorter and less frequent.

I’ve been tested for so many things: hypoglycemia, anemia, thyroid issues, Lyme disease, HIV, multiple sclerosis, narcolepsy, seizure disorders, exposure to toxins, adrenal fatigue, myasthenia gravis, periodic paralysis, Tarui disease, cardiac issues, lupus, SIADH… I may have forgotten some things.

When I feel well I can exercise fine and my HR stays below 150. When I don’t feel as good, my HR can jump to almost 180 with only a minute or two of effort. I asked my doctor about this 2 years ago; she had her nurse check my vitals lying down, sitting and standing. The nurse got very animated, almost shouting: “Your HR is all over the place!” She told the nurse excitedly, “She’s orthostatic!” The doctor says to me: “This just means you’re dehydrated.” So I’ve been drinking a lot of water, but it doesn’t help. She ordered a 24-hour Holter monitor; I was told it was normal. Got a copy of my records a couple months ago, and the report actually says I have sinus tachycardia. My only other abnormal test result is low sodium, one time; there have been other times when my sodium tested fine.

I do not normally have problems with passing out, and I don’t think I have blood pooling in my legs. My feet don’t turn colors. Mornings are actually usually my best time of day, especially before eating anything. If POTS is a possibility, I guess it would have to be related to low blood volume and/or splanchnic pooling(???) I wonder about hyperdopaminergia, because I also have blepharospasm. Blepharospasm is one of the first signs in a Parkinson’s patient that their levodopa dosage is too high. Thank God I have blepharospasm, because it got me qualified for disability, even though I feel like the exhaustion/lethargy/weakness/fatigue whatever you call it, is even more disabling than not being able to see!

Sorry this is so long. Thanks to anyone who made it through and can offer your opinions. A video if you care to see it: http://www.youtube.com/watch?v=GIwXXf2N4s4&feature=mfu_in_order&list=UL

Geode

[icesktr189]

I also developed facial redness in a butterfly pattern"

Have you been checked for lupus? That is a huge symptom, especially with everything else going on. It sounds like dysautonomia, but it could also be an autoimmune thing. That is the problem with this stuff, is there are so many symptoms, so its really hard to say. Have you seen a rhemetologist?? Have you had high ANAs?

[icesktr189]

I just say that you were tested for Lupus... I heard of people getting multiple negatives then a positive.

Also, I dont think that the extreme muscle weakness you show after eating is normal with POTS. I do feel more tired and slumpish after eating a meal, but not to the point I cant keep my eyes open.

[Geode]

Thanks, Dani ... I have seen 2 rheumatologists who both came up empty. ANA's are perfectly normal. An endocrinologist also thught of Lupus because of the rash, but all her testing came up empty, too. I'll check into it again .. How long would it take to show up? I was just tested again 2 years ago, after almost 14 years of being symptomatic

[julieph85]

Hi I feel like you would definitely have an Ana if you had lupus. I agree with dani that a lot sounds like pots but the dropping after eating is not a typical symptom nor is the muscle contractures you demonstrate. The lethargy after eating makes me think thyroid. I think it would be worth it for you to see a dysautonomia doc

[HopeSprings]

Wow, I understand the frustration of being so sick and not being able to get a diagnosis - it took me 10 years to get the POTS diagnosis. I think dysautonomia symptoms are very varied among patients and since you do have the orthostatic issues, it would be worth looking into. Hey, you've been tested for everything else! Have you seen a neuromuscular Doctor?

[Lemons2lemonade]

Hi there! I'm sorry to hear about your troubles. Pots is diagnosed by a tilt table test. You can do one yourself by checking your pulse and using a blood pressure cuff. If you are orthostatic, which it sounds like you may be due to your past experiences it could have a number of causes. The first is that it is possible that you could have been dehydrated. Was that the only time your pulse did that, or is it happening frequently. Lay down for 10 minutes, check your pulse. Then stand up and check it again and see how much it rises. It is normal for everyone's pulse to rise, but if it is over a certain amount of beats per minute you could have pots. General malaise is unfortunately not good diagnostic criteria. If i were you there would be some tests that i would do before paying the money to see an autonomic specialist. The first would be heart related. I would look into getting a referral to a cardiologist. They are the ones who do the tilt table test anyways. While you are there i would get an echo to make sure that there aren't any structural abnormalities. The fact that you had sinus tachycardia means that it is probably that you aren't having any dangerous arrythmia type issues going on--which is good news! Also, simply drinking water doesn't necessarily help dehydration--you need electrolytes like salt and potassium to help retain the fluid. Also, avoid diuretics like coffee, tea, soda etc. Something to note is that you could have parkinson's and pots. My other questions would be whether or not you have had brain m.r.i. done. If it were me, my guess would be cardiac or neurological...It would probably be worth your time to get your kidneys tested as well, have you heard of addison's disease or cerebral salt wasting syndrome?

[yogini]

Lemons is right. I'd measure your HR and BP sitting and standing and when you are having symptoms. A consistent change drop in BP or increase in HR would indicate dysautonomia. Good luck in getting a diagnosis!

[RichGotsPots]

If you go to an autonomic specialist try to go to a Neurological one because they might be able to further rule out neuro-muscular issues too..

[lillybits]

ever get tested for mg?

[L4UR3N]

Have you seen a gastroenterologist and had an endoscopy? Since your symptoms seem to occur only when your stomach is full, I think you should start there. If that turns up clean I would try to get an upper GI series as well as blood work taken WHILE you are having the symptoms (so after eating).

Have they checked your pancreatic function?

[potsgirl]

I would definitely do a tilt table test (the major diagnostic tool for POTS) at home first to see what happens. You want both your BP and your HR. You can find a good cuff with a digital monitor at a drug store or online. You would need to see what your BP and HR were after you've been lying down for 10 minutes, (you can also do sitting, but I usually do the supine and standing readings), then take your readings at 1, 3, 5 and 10 minutes. Mayo Clinic defines POTS as having an increase of at least 30 beats per minute when you stand, with your BP staying pretty constant, usually with no more than a 10-15 point difference. If your HR goes up >30 beats, and your BP drops significantly, you're probably looking at Orthostatic Intolerance/Hypotension. That's what my numbers do, and I have autonomic neuropathy, small fiber neuropathy, and occipital nerve headaches.

I would also suggest a cardiologist, since my problems started out with dilated cardiomyopathy, and some of your problems may be heart-related. My neurologist is the one who does my autonomic testing (including TTT) and also echocardiograms. He caught my blood clot that was in my heart about 9 months ago, but he's an autonomic specialist at the Mayo Clinic in Arizona.

Good luck, and let us know how you're progressing.

Cheers,

Jana