Can POTS explain my symptoms or could I have comorbid Fibromyalgia and IBS/IBD?
I have lightheadedness and dizziness that happens when I stand up after lying down. At first I thought it might be orthostatic hypotension and I started taking my blood pressure and pulse before and after I got up. The blood pressure goes up slightly. The pulse, however, goes up immediately and significantly. I also feel my heart racing and pounding in my chest when I get up. On the three times I checked it, my pulse went up 32 beats, 38 beats, and 46 beats immediately from lying down to standing. I am wondering if I have POTS (Postural Orthostatic Tachycardia Syndrome). Can other conditions cause a rise in the pulse like this, or if I have this effect does that mean that I have POTS?
Here are some of my other symptoms: loss of appetite, occasional fatigue, widespread muscle pains, shooting nerve impulses in arms and legs, parasthesia (pins and needles) feelings in arms and legs, occasional muscle spasms (moreso at night while sleeping), some slight shaking when I am standing, tendonitis-like feelings, worsening symptoms in high heat conditions, bright sunlight, and after meals, and vision disturbances (blurry vision, conjunctivitis, and dry eye). When I try to go jogging, something I used to do 3 times a week, I get very lightheaded and weak. When I eat anything or drink any liquid, I will feel light-headedness and have a lot more gas pressure and burping than I used to have. I am avoiding high gas-producing foods like cabbage, cauliflower, beans, etc. I am also avoiding fats, because they seem to be major triggers. I have unintentionally lost about 5 pounds, so no major weight loss. I was wondering if the gas problems were due to delayed gastric emptying. I read somewhere that that goes along with POTS. Overall, though, I am wondering can POTS cause all of these symptoms, or does it sound like I have something like Fibromyalgia or IBS/IBD with comorbid POTS? I have had these symptoms since early January 2011 and they are taking a toll on my ability to function. Please help!
Also, there is a daily pattern to my symptoms. They seem to be worst in the afternoon and evening about 4 pm to 9 pm. It is the warmest part of the day and we have a lot of sunlight coming in through our windows at that time. The sunlight actually hurts my eyes and I feel overstimulated by both the heat and the sun.
You may have more than one problem going on. Sometimes someone with a gallbladder issue or a large hiatal hernia will have additional burping and certain foods can trigger it a gallbladder attack.
But regarding your orthostatic tachycardia you are describing, the 30 plus beats a minute increase just might be P.O.T.S., but since you are unemployed, does that mean no medical insurance right now? If so, I don't know if you want to go to an electrophysiologist to try to get a tilt table test and get a doctor diagnosis.
If you have dark stools or blood in them, you might want to get tested for iron deficiency, because that can cause tachycardia, fatigue, etc.. You also might take your blood pressure to see if it is lower because of vasodilation brought on by the warmth from the sun. Of course, staying well hydrated is important too.
Sounds like you definitely want to take conservative measures at least regarding the sunlight sensitivity, having the kind of curtains that block out the sunlight (they don't have to be expensive) and a nice dark pair of sunglasses you can wear. You may want to see an opthamologist about the conjunctivitis and try some preservative free eye drops for the dry eye (which can make vision bleary at times). They also can assess your blurry eyesight.
You have many symptoms listed here, and you really need a medical work up- check your potassium, your blood sugar, and more.
Thank you for your reply. I have no insurance right now and have been going to a free clinic with limited resources and paying for other tests and specialists out of pocket. I just looked up the tilt-table test and it does look pretty expensive. I do not have dark or bloody stools and I have been checked for anemia and B-12 deficiency, which I do not have. Also I did see an opthalmologist and I am using Pataday for the conjunctivitis and eye drops for the dry eye. I definitely get symptoms of hypoglycemia when I haven't eaten in 2-3 hours but my blood sugar is fine (my baseline is about 90 and it does occasionally go below the baseline, but not more than about 10). So far, the glucose has not gone above 125 after a meal.
Glad you're getting treatment for your eyes and have had some testing already.
The criteria for POTS is what you posted, plus standing norepinephrine above a certain level. I was diagnosed with POTS with the tilt table test alone. I think if you are having this type of thing happen to you daily upon standing, and really want a diagnosis or to have POTS ruled out, you might want to save up for that tilt table test.
Thank you again. I feel best in the morning and do not start having the lightheadedness and tachycardia until I have exercised, eaten food, or have become fatigued (which happens pretty quickly). Do you know if that is consistent with POTS?
Also, do you know if the pulse starts dropping after 2 minutes that that would exclude me from a diagnosis? From what I can see, Satish Raj is one of the only ones saying that it must be sustained for 5 minutes (or maybe I am misreading what his article seems to be saying). Thanks again ... I am new to this condition.
Have you looked into applying for something like Medicaid (or they call it something different in CA? Medical or something?) It seems as though you need a battery of testing that's going to be rather costly; is there any way for you to get some sort of medical coverage, even short term?
It's really impossible to speculate on whether you would meet the diagnostic criteria for POTS based upon you trying to do a poor man's tilt at home. There are simply too many variables, and it's too unreliable to use as a basis for diagnostic purposes. Its only real utility is to suggest that it may be worthwhile to pursue the actual medical diagnostic testing. I would say at this point that you have established that. Have you discussed this with anyone at the free clinic? Can they refer you to a public research hospital? Such a hospital is much more likely to be in a position to help you. Not sure where in the state you are (and I know it's massive), but just as an example, Stanford has a good reputation for diagnosing POTS. Many hospitals receive government funding which they can use to treat patients without insurance who have no or limited incomes on a sliding scale; the truly indigent can get *necessary* hospital treatment through this system at no cost. Even those with modest income (say, 150% of the poverty line) can still get a significant savings off their hospital bill, though.
If I were you, I would try looking into these things if you haven't already. For more information, contact the financial aid or social work department at your hospital.
def get tested...many don't know this but Cleveland Clinic has free programs as well as financial assitance programs in most states, so if you're near CC check this out: http://my.clevelandclinic.org/Documents/Patients/Financial_Assistance_App_0809.pdf
you could always call Mayo or Vanderbilt and see if they have programs like this also
Thank you for your replies. I think I am getting some insurance. There is too much that needs to be done and ruled out. Thank you for the Cleveland Clinic suggestion. I might try to go there or Mayo Clinic. Thank you also for the Stanford suggestion. I'll look into that. I have already taken advantage of the financial assistance program at the emergency room of my local hospital and have had a free ER visit, but it seems like the assistance only applies to emergency room visits not not elective procedures. Please correct me if I am wrong. I have looked into this somewhat but am not an expert yet. I am not sure they would do a tilt table test and cover the expenses. I like the idea of research hospital possibility too. Good idea!
I do not know what everyone's experience is with P.O.T.S., but based on my own experience with it and my understanding of it, I would think it would be unusual to have P.O.T.S. and not experience tachycardia after you've been lying down for hours sleeping and then stand up. It is normal for the heart to work harder with eating and exercise. But with P.O.T.S., the more rapid heart rate can tend to be overboard with eating and the amount of activity (in an upright position) it takes for the heart to excel in rhythm .
You say you are worse with fatigue and fatigue easily- one thing that can cause both fatigue and rapid heart rate is iron deficiency. You may remember I wondered about possible blood in stool... but that's not the only cause of iron deficiency. Not saying that's what you have, but something your doctor might want to consider.
Thanks for the suggestion ... I was checked for anemia but I didn't have my iron levels checked specifically. Also, I may have been dehydrated at the time they checked.
I do think it is weird that morning is the best time for me. I was wondering if that could be evidence it has to do with cortisol levels since those are usually highest in the morning. Could adrenal insufficiency / Addison's be a cause of orthostatic tachycardia?
You'd want to get ferritin also, as my doc says it's the best indicator for how iron is doing in the body (it's the iron stores). Addison's has low blood pressure as a symptom, but one website says blood pressure falls lower when standing, and you said yours went up slightly. There is normally some fluctuation in blood pressure with standing. With P.O.T.S., it might overly fluctuate higher (like mine, which I describe as it spikes).
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