IceSkate

Also I'm beginning to think it was all in my head due to anxiety... uhg

After having some problems this summer, and having a tilt table test this fall that showed my heart rate going from 60 to 120, and having 2 months of not being able to taste anything and having full body numbness, I think I can say I had POTS even though my doctor does not think so. I had an MRI to rule anything else out, and it was clean. My POTS seemes to have gone away, but I am very scared it will come back. I'm 28 by the way (I know adults have different relapse rates than kids). I'm just really scared because at the time I had POTS I had just graduated and had no job, and I probably would have had an immensely difficult time working. Now that I have a job, I'm really worried it will come back and I won't be able to work. Has anyone found any way to prevent it from coming back? What's worse is that there probably won't be any doctors to believe or treat it if it does, just like the first time.

How long does your ability to taste go away? I could not taste for 2 and a half months... then it came back. Also during that time I had whole body numbness (could be the cause of the inability to taste). I do not yet know if this is from POTS or something else. I have a doc appointment in a couple of weeks.

Unfortunately I could not find a neurologist at my hospital who knew about POTS. I still wanted to get checked out for the taste and numbness. One doctor I saw thought I might have more than one thing wrong (maybe POTS and something else).

I was able to bump up my neurology appointment to 2 weeks. In summer, I had symptoms of POTS and my tilt table test in October revealed an increase of 60 bpm. From September through November, I could not taste and my entire body was numb. Since November, I have been 100% better. However, the numbness and tasting problem prompted me to make a neurology appointment. Does anyone have advice on how I should go about asking questions or describing what has happened to me. My general doctor and cardiologist did not think I had POTS. I don't know if the numbness and taste issue is from POTS. It could be something else or I could be completely fine since I feel fine. It's just hard to deal with doctors. The general doc thought it was just anxiety, but my tilt table said otherwise.

I was actually turned down from Mayo. I listed my symptoms and they said they couldn't take me. Fortunately, I am not experiencing symptoms. I'm just worried that it could be MS

Hi Maiysa, Fortunately I had no BP changes during my tilt table test. I have also never fainted. The numbness was present throughout my entire body for 2 and a half months. I also could not taste anything for 2 and a half months. I was able to feel if something was touching my skin, but it was like my skin was desensitized... like it was only 50% as sensitive as it normally is. Then the numbness went away and the taste came back over about a week. I'm hoping this is all related to POTS and not something else like MS.

My symptoms slowly got better over maybe a month. Then I was just left with whole body numbness and inability to taste, but otherwise felt great. I have been symptom free since mid-November. Please don't give up hope. I know my symptoms might come back, but I'm trying to live like they won't. Research and awareness will only improve with time. It won't get worse.

I think it would be interesting, too. I messaged him and he only said "I don't think you have POTS." So, I asked him about the tachycardia and what caused that, and what was a normal heart rate increase, but he only said, "I still don't think you have POTS." He really wasn't answering my question. I just want to make sure if it is POTS, that it was only POTS and not something else because the lack of taste and numbness are pretty weird.

I was wondering why, this past fall, my doctor did not diagnose me with POTS. In the summer, I experienced severe lightheadedness, headache, wearkness, fatigue, twitching in my legs when I lay down, and by fall I had numbness throughout my body and could not taste. Prior to that summer, I had problems with blurred vision, constipation, abdominal pain, and insomnia. I had my test in October, when most of the symptoms were gone or had decreased. My heart rate went up from 60 to 120, but I only felt slightly lightheaded. I saw this article, http://www.cfids-cab.org/rc/Brooks.pdf, which says in the second paragraph that POTS is diagnosed when the heart rate goes up over 30 during the first five minutes. I originally thought it was during the entire 40 minute test. The article also says it must be accompanied by 3 orthostatic symptoms. Perhaps the doctor said I did NOT have POTS because I was feeling somewhat better at this time. Still, he would not explain to me why my heart rate was going up. Their conclusion was anxiety. Maybe it was... I certainly have always had anxiety issues, but how could I have all those symptoms and it just be anixety? Has anyone done tilt table tests and had the results come back negative for POTS, and then later had a test positive for POTS? I have been symptom-free since mid-November. I made an appointment with a neurologist to discuss the numbness and lack of taste, in case it wasn't POTS, even though my doctor thinks it's uneccesary. I was just thinking about this last night as my appointment was soon, but I will have to post-pone it due to work.

Thanks for your advice kcmom. I did make an appointment with Mayo, knowing it would take a long time, so I think I'll keep that and see. I know I just have to live like the POTS is gone completely and not worry about it coming back. Thank you!

Thanks for the tip. However, this didn't work out with my internist (I won't be seeing her again, though) and my cardiologist. I brought her an article from pubmed published by Vanderbilt University and sponsored by the national institute for health. She didn't even look at it. She just said, "We have licensed cardiologists here who say you do not have POTS, and you have some article from who knows where"... even though I told her exactly where it was from, who wrote it, and who supported it... Kind of traumatizing... I just feel like I've been branded crazy by these doctors and if any unexplained symptom comes up they won't believe me.

I think I'll keep my neuro appointment for now. My fear really is just having the neurologist look at me like my internist, cardiologist, and endrocinologist did... like I was crazy and my symptoms were in my head. It's a terrible feeling.

What I'm most scared of is that I can't find a doctor who will even believe I have POTS. I saw an endrocrinologist (because last spring I was diagnosed with hypothyroidism - but it's OK), and he brought up POTS because he remembered hearing about it maybe 15 years ago, but he said he didn't understand it and couldn't diagnose it. He wanted me to see an internist. The internist allowed me to see a cardiologist for a tilt table test, which came back as my heart rate increasing 60 beats over the 40 minute period, and dropping back to where it was (around 60-70) when I was horizontal. The cardiologist noted this in the test results, and then said he didn't think I had POTS. The internist agreed with him, but neither would talk any further about it. They just thought I had an anxiety disorder. It just makes me feel crazy. But my biggest fear is that I have no doctor to back me up... I would feel 1,000x better if I did. I live near La Crosse, Wisconsin right now. Anyone know of anyone here who at least is willing to learn about POTS? I applied for an appointment at Mayo, but it will take forever and since I'm feeling 100% better now I doubt I would go. I am worried about summer, though... summer of 2010 I started getting horrible stomach aches 20 minutes after eating/drinking anyything (even a sip of water), and my eyes dried out to the point I had to be constantly putting drops in them.... then in fall the eye pain went away. In summer of 2011, I would walk the laundry up the stairs and be so winded I couldn't do anything for hours. It was like I had run a marathon... I felt such fatigue... and it went away went the weather got cold. I really wish a doctor would help me. I might be started a new job soon and I'm worried it will come back. I hope it doesn't.

I'm scared of it coming back. I know most people on this forum are those that have very hard cases of POTS. I'm hoping mine was not too bad. I think my biggest worry isn't only the illness itself coming back, but that I don't have any doctors on my side. And now that I feel completely better, I really wouldn't have any doctors on my side. Even though my tilt table test revealed an increase in bpm of 60, they said I didn't have POTS, but they wouldn't say why they thought that. They just told me I had anxiety. I admit I am scared of the summer because of the heat. It is cold here now. I really, really was hoping that I would be OK. I'm only 28.

Does adults POTS tend to go away permanently? I am wondering because I got sick around a year ago. It got worse last summer to the point it was difficult to do anything. From September through October I could not taste ANY food and I had a slight numbness throughout my body. In early November my taste came back, the numbness went away, and I no longer felt ill when standing. All my POTS symptoms are gone. Do you think my POTS could be gone for good? I am concerned that it will come back. Has anyone read any studies or had any experiences relating to it going away completely or coming back? In October, I made an appointment to see a neurologist for the numbness and inability to taste. The appointment is for January, but since I can taste completely and have no numbness, I am thinking about not going.

Lieze, Can you taste food at all? I do not have problems with my throat, but my tongue (and entire body) experience numbness. I can't taste food. I do not know if this is POTS related or due to something else, though.

Hi pulp, I seem to be in a similar place with getting a diagnosis even though my numbers indiciate I have it. How is it going?

I got a call back from Mayo about setting up an appointment. They are sending a packet for me to fill out, and then will contact me back if they can see me or not. I have had multiple symptoms, as well as a tilt table test with a bpm increase of 30-60. They said since I have multiple symptoms, I would have to see an internist there first. Has anyone else gone to Mayo and had to see an internist before seeing someone for POTS? What department did you go to at Mayo? Autonomic neurology or something else? Thanks!

Mine was an increase of up to 60 beats per minute. My blood pressure didn't change. Does anyone know if certain increases in heart rate correlate to certain symptoms? What was your heart rate increase on your table test? I'm curious if certain numbers correlate to certain symptoms, or if POTS is pretty much different in everyone.

Does anyone have most of their symptoms go away for weeks at a time, or even months? Around mid-September I was really bad and laying in bed a lot. But now I'm up , moving around and being active. I have numbness in my body and cannot taste anything, but I'm only a little fatigued. I'm able to be active right now. I'm not sure if I have POTS (I probably do since my tilt table test went up between 30-60 bpm). But this summer and early fall I was doing horrible, and now I'm so much better as far as being active. I'm scared, though, that I'll fall into the symptoms again.

Thanks for the advice, Sandy! So even when you receive a diagnosis from a reputable doctor/institution, your local doctors will treat you like this is all your in head? That's unbelievable... I'm just feeling so confused about my next step. I don't even know how to get in to Mayo. Do you need a referral from a doctor? I doubt that will happen... I just feel like if doctors won't take me seriously (as having ANYTHING... POTS or something else... even in the face of objective evidence)... how will other people take me seriously? I don't know what's wrong with me, and I don't know how to explain it to other people. I don't know if I should see a neurologist here now (it's in about two months) for the inability to taste and numbness... but now you mention numbness as one of your symptoms, I don't know if I should try to see a doctor at Mayo for POTS... I just feel like a freak and that I'm going to continue suffering forever. I don't even know what good it will do because I'll have to come back and have no doctors who will believe me (if they say I have POTS at Mayo...). If I do have POTS, I have to say that sometimes the non-medical "problems" relating to this illness are just as bad as the medical ones.

Hi Katy, Thanks for the info. I have checked the list. I am a few hours from the mayo clinic in MN. I don't know now if I even want to go to a doctor. I went to an internist today, really just to get a referral to a neurologist. Not because of POTS, but because for the past two months I have experienced ageusia (the complete lack of taste, as opposed to just a minimizing of taste) as well as an alarming degree of numbness throughout my entire body. These could be from POTS, but might not. I have no idea. I would think ANY doctor would send someone to a neurologist if they had these symptoms (always present) for two months to at least rule anything out. I've had blood tests, and I only take levothyroxine for hypothyroidism, but has been corrected since Spring. The doctor originally said I would have to wait a month to see her because she wanted medical records from a hospital in another city where I had lived. Someone I know recommended calling her and asking for a referral because this could be the sign of something serious... but maybe not... still wouldn't you think a patient should see a neurologist if you can't find any other explanation? The doctor ultimately gave me the referral when I asked. However, she thinks I do not have POTS and that I have anxiety. I certainly do have anxiety after that visit! Anyway, she thinks I do not have POTS. However, she cannot articulate why I do not have POTS. I had a tilt table test where my heart rate went from 50-60 laying to 90-120 standing. The cardiologist also would not articulate to me why I did NOT have POTS. I never was confrontational or said "I HAVE THIS!" because I'm not like that. I just asked him why he thought I didn't when the numbers were like this. He only replied twice "I do not think you have POTS." So someone in their 20s develops the complete inability to taste (which is extremely rare according to my research) and full body numbness (I can still sense things, but it's like the nerves are very weak) has these things because of anxiety? (yeah right...) I am not saying I have these because of POTS, either. Maybe I have something else that causes the ageusia and numbness and also caused POTS. I don't know... but I really really doubt it's because of anxiety. Also, the doctor said "Well, what does it matter if we tell you that you have POTS or not because we can't treat it here." However, both an endocrinologist who first mentioned POTS to me and my cardiologist both said they had treated people with POTS with betablockers. This internist was incorrect. Also, it's crazy that I can't get an answer from my cardiologist about tilt table tests and POTS when apparently he has diagnosed people with POTS. Now I'm being labeled as anxiety-ridden and thus can't get the help I need. I think I have POTS, but it's not that bad right now. I don't even know if going to a doctor is worth it anymore. I'm kind of scared to go to doctors now. I never had that in my adult life until this. I WILL see a neurologist because it just seems like a smart thing to do for the two weird symptoms of whatever (maybe not POTS related). But don't worry about me! I'm doing fine and will keep on truckin'.

Thank you, ramakentesh. The cardiologist who said I didn't have POTS did a lot tests for blood pressure, such as checking the blood pressure in my ankles. I don't know, unfortunately, what he is thinking because he won't tell me what he's thinking when it comes to diagnosing POTS or not. I called my local hospital to see if their neurologists treat POTS or autonomic disorders, but they called back and said no. I guess I'll try getting in and see about an MRI for the symptoms of numbness and inability to taste as they might be something else. I'm just frustrated because I'm not sure what's happening to me. I've been living at home and looking for work since graduation last spring, but I'm scared of moving and working because I don't know if I can do it. I'm just not the mood to deal with a doctor who isn't open to discussing things. I feel so bad afterwards... and I can't seem to find a doctor who knows about POTS.

Thanks so much for your responses, everyone. I will try to bring one of my parents with me. I think having another set of ears is a good idea as kcmom and chaos suggested. I think I will need to see another internist for this as this one doesn't seem to know about POTS. I saw her after seeing an endrocrinologist who has heard of POTS, and suspected it, but wanted me to get established with an internist. The internist said my symptoms did not match with POTS, but I definately know fatigue, lightheadedness, and abdominal pain do. I guess I will see the internist on Wednesday, get a referral for a neurologist, and also talk to the internist about POTS with my parents. Then after that appointment or after the neurology one, I'll look into seeing another doctor. Does anyone have advice for what to ask in a neurologist? Perhaps you can't really ask for anything specific. I don't think they have autonomic specialists here. Also, I'm not entirely sure what the symptoms of inability to taste and full body numbness are about, so I wouldn't know what to ask for there. I'll keep everyone posted. Thanks for such a wonderful place to get information that unfortunately isn't available in a place where it should be (...my hospital...)!