Apparently no one can figure out what is wrong with you. Ask your doctor for one dose of Xanax. If all the symptoms disappear you might be suffering an odd form of panic attack.
Hi,
Do you belong to the Dysautonomia Medhelp group? It has been helpful to me over the years.
I would seek the opinion of one of the top POTS doctors/clinics. The list is not complete, but here are a few suggestions. Also check out Dysautonomia International for lots of information, research, and list of POTS doctors.
Dr. Svetlana Blitshteyn - SUNY Buffalo Medical School and private practice Dsyautonomia Clinic
Cleveland Clinic, Dysautonomia Clinic
Vanderbilt University, Dysautonomia Clinic
Mayo Clinic - Rochester, MN
I began seeing Dr. Blitshteyn recently and am impressed so far. She also does phone consultation for patients too ill to travel. I heard very positive things about her from people who are patients of hers, including those who did phone consultation. And two were treated at Columbia previously. She has a website.
What you are describing is very common in POTS, but there are not many doctors who are experts in POTS and can recognize what you are experiencing, much less treat it effectively. I agree with other posters that you may need more evaluation of causes of your POTS.
Hope this is helpful.
The ticks that cause lyme disease can be very hard to see, as they are tiny, and ticks don't always or even most often manage to hand on until they blow up to where they're easily seen.
A diagnosis of anxiety by "well-meaning doctors" often means they don't know what is wrong with you. This was the facile diagnosis i got from Columbia-Presbyterian after four days of tests. It took a year, suffering incapacitating fatigue and daily pain, before I found out what was wrong with me, and the cure was so simple that I was enraged. It was an extreme intolerance to gluten. I was well within one week and it didn't cost a dime.
There would most likely be no change is basic lab work such as CBC and CMP with a long standing infection. Only 50% remember being bitten by a tick. Your POTS history can give a lot of clues on what to look for. But if you don't want to explore further and want to accept an anxiety diagnosis, that's your choice. I'm sure well-meaning doctors have told you it's just anxiety.
These are the facts, but you can believe otherwise. I wish you luck.
If i was bit by a tick i think id know plus my basic blood work would be thrown off in same way its not like id need to be tested for lyme to see the issues it caused in my blood work i was tested for it 3 years ago
Wow if you read other peoples post all the symptoms are the same. Seems like stress, depression and anxiety. I think some people just need a life change for the positive and filter out the bad.
Good luck
If you wanted people to just come here and agree that all your symptoms are probably just a form of anxiety, I am sorry I could not provide that validation based on the history you described.
POTS after a viral infections is usually diagnosed as Chronic Fatigue Syndrome if you have been symptomatic for at least 6 months. It's a very debilitating neuro-immune illness, despite the benign sound of the name. The syndrome causes sleep disturbances, neurological problems, pain, anxiety, and so on. There are specialized tests, inflammatory, and immune markers that have been well studied can aid in diagnosing, but as of now they are not recognized by the CDC, so Columbia probably doesn't do any these tests as far as I know. It's not much different in severity than other disorders (like M.S.). Some people recover after a number of years, some don't. Especially if it was a herpes infections (EBV or HHV-6 usually) or enterovirus, but there are many other triggers including bacteria and protozoa.
It is not currently known if the symptoms are caused by past infection or long-term chronic infection. Some experts have different opinions. Some will say your POTS is post-viral, but there isn't clear evidence that that is true. It's a guess at this point.
Unfortunately, despite there being many lab markers studied and despite the fact it is an organic syndrome like M.S., Chronic Fatigue Syndrome is usually diagnosed clinically. In the United States, they rely upon the CDC criteria which is not very accurate. The Canadian Criteria (CCC) is much more accurate, and you can determine for yourself if you fit if you want. This is the criteria that both top United States University experts and Internation experts are trying to convince the CDC to adopt.
http://www.cfids-cab.org/MESA/ccpc.html
However, given your location, have you had a Lyme Western Blot? You do fit the clinical picture for late stage neuropsychiatric Lyme disease, and these symptoms may not appear until the illness has progressed. How do you know it was a virus and not a bacteria that caused your POTS. Do you know what virus triggered the syndrome.
I think getting answers for these questions (if you don't already have them) may help your situation.
Here's what Columbia says:
"Neuropsychiatric symptoms can emerge either early or late in the disseminated phase of infection. These symptoms commonly appear as cognitive symptoms (as in the encephalopathy above) and as irritability, easy tearfulness, anxiety, and depression. Rarely, patients with undetected Lyme disease may present with obsessive compulsive disorder, paranoia, auditory/visual hallucinations, or full blown mania. Sleep disturbances are also common in Lyme disease, with patients more often reporting a need for many hours of sleep, including daytime naps. Sensory hyperarousal occurs in about 50% of patients with later stage neurologic Lyme disease, most often affecting hearing and/or vision. These patients may resort to wearing earplugs, sound protectors, and/or sunglasses indoors. Normal sensory stimulation may over-stimulate, causing confusion and triggering a limbic alarm as if one had been assaulted."
http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html
Yes, these can be anxiety/panic symptoms too unrelated to Lyme. But Lyme can mimic all symptoms you described. And you have POTS.
My goal is not to alarm you to make the anxiety worse, but rather point out that your symptoms may stem from something else that could possibly be treated. I wouldn't normally write a response like this to someone, but ignoring your history of POTS as if it's unrelated may be a mistake.
And don't have blind faith in experts. Sometimes they don't know as much as you would like to believe.
A couple last questions: Is there a strong history of anxiety/panic disorder? Have you been tested for things that I mentioned in previous posts? I left this out: Have you had your catecholamines looked at?
If I saw your history in chronological order, I could have a better idea of what could be going on. Things such as: when did you have the so-called virus, and what virus was it.
I was thinking maybe a rhuemology problem since my muscles go weak and tight and achey sometimes since the mdi of brain and cervical spine was fine
I came down with pots after a viral infection but i am over it now i have been to plenty of doctors at columbia including the top autonomic neurologist at columbia thats the only hospital i deal with and all my test come back normal
I had lots of your symptoms and the heart thing was also ruled out for me. Columbia-Presbyterian come up a real zero for me, by the wat. I am fine now after playing detective. My problem turned out to be an intolerance to gluten and cortisol that tended to spike at night.
Sorry, I missed your location. It appears you are in New York. I would definitely try to get into one of the infectious doctors at Columbia for a Lyme test (and other things mentioned). I believe they have one of the most prestigious tick-borne disease research centers in the United States. I believe Lyme disease is one of the most common vector-borne diseases in this country, and is very common in New York - even more so on Long Island. It can cause POTS symptoms.
Do you remember seeing a tick on you recently? Not everyone does, but if you do, it increases the likelihood of Lyme disease.
Have you seen an endocrinologist about your thyroid or other hormonal issues? And have you had your magnesium levels checked? How about Ciliac Disease? I'm no doc, can't diagnose you, agree with the above post -- keep digging.
If you have Postural Orthostatic Tachycardia Syndrome with your symptoms, I wouldn't think that anxiety/panic would be your primary diagnosis. Anxiety/Panic can be comorbid of POTS (autonomic dysfunction can cause anxiety), and while POTS can have a genetic basis it's often secondary to something else.
In your case, while you do have symptoms of anxiety/panic and possibly depersonalization and derealization, the fact that you have POTS means there's likely an identifiable underlying cause of your symptoms. Some of these causes can cause severe organic anxiety as well.
Some causes (in orderof I think would be likelihood) could be mononucleosis, Lyme disease, Chronic Fatigue Syndrome, Addison's disease. There are other causes, but I would start there. Unfortunately, while Lyme testing is good at picking up a couple strains originating from the east coast (these strains usually have more arthritic symptoms), there are newly discovered strains that will show up negative on testing.
What is your geographic location?
Does any part of your Lab work have ESR? I ask because if you have a low ESR it could indicate one of these conditions, but unfortunately 99% or more of doctors never heard of a low ESR and weren't trained there is such a thing.
Given the fact that you have a POTS diagnosis, I would keep digging to find an underlying cause.
Paxiled do you have any idea what it might be or sound like to you
I'm going to posit the opposite position. Anxious people are anxious -- they're afraid of things they're not afraid of. You report not feeling anxious, therefore it's likely not anxiety. I always say you know when you have anxiety, it's in your head, not just your body. So if what you say is true, that you don't feel anxious, you don't avoid things because you're irrationally afraid, etc., then you're probably not suffering anxiety.
Hi, there - I'm sorry you're going through this.
You've posted several times the last few days in regards to your current struggles. I know this is hard - so many of us have been there. It can be scary when we have all these physical symptoms & our brain is telling us it must be something bad.
I'm not a medical professional, so I can't diagnose you. But the short answer is yes, all the symptoms you described can be attributed to anxiety. Anxiety & stress can wreak havoc on all our body's systems. When mine is bad, GI distress & chest pain are some of the first things I experience.
It's great news that your tests have come back negative. Anxiety can make it easy to focus on our physical symptoms, and leap to the worst conclusion in a single bound. The first thing I would recommend is to stop googling your symptoms. Google doesn't know your weight, height, medical situation, etc..
It sounds to me like you have already done some thinking that this could be anxiety. Your regular doctor can go over these symptoms with you in a more objective setting, and if he/she agrees with you, then you can start working on a plan of action to address your symptoms.
Good luck - hope you find answers soon!