Hi, I am a 36 yo female newly diagnosed with POTS after a year long mysterious illness. I started feeling crummy after flu shot, then for a few months just thought I was fighting off my kids virus. I then got strep throat it and it was down hill from there. I still have fevers, tachycardia, flushing, fatigue, chest pressure and discomfort, dizziness, night sweats and more. I also had bizarre reactions to sedation medications during a procedure as well as reactions to contrast dyes too. I had a positive tilt table test and diagnosis for POTS. The big concern is my doctors don't think my fevers are related to POTS. I am still having fevers up to 101... it cycles throughout the month. It seems to link up around my period. I do feel worse when I have fevers. I am being worked up by many doctors including ID, but I am not showing any signs of infection. Does anyone else have fevers with autonomic dysfunction?
My son, last month, actually had the opposite problem. His temperature dropped to 93 degrees. It was the first time, that we noticed anyway, that that had happened. We took him to the emergency room and he was admitted overnight. They got his temperature back up and released him once he was stable(he was also dizzier and more nauseas than he had ever been before).
Since the autonomic nervous system regulates body temperature, I would think that your problem of fevers could be from the dysautonomia.
What you have sounds very similar to what I have. Mine started about 5 yrs ago where I would get a fever that lasted 6-8 weeks. During this time I felt really sick and all my symptoms got worse especially around my period. The fever would go away and come back several months later and it started all over again. At that time, I didn't have the tachycardia and wasn't diagnosed with POTS yet so no one knew what was wrong. I went from doctor to doctor for five years with no diagnosis. The fevers eventually went away but I started getting severe muscle and joint pain. It wasn't until last year when I got tachycardia that wouldn't go away that I was eventually sent to a Cardiologist and diagnosed with POTS.
I know that temperature is part of the autonomic nervous system but I believe in my case, I have something else that caused the POTS since the POTS didn't come until years after the fevers. I have been searching and searching for answers to what is causing all this but there are too many to pinpoint. I also had a dye and anesthesia reaction. I have also developed vitamin deficiencies which is my latest battle. I don't think the fevers are related to the POTS but that the POTS is related to the fevers. I keep hoping that if I can figure out what it is, I can cure my POTS but I know that's just wishful thinking. I wish you luck and hope you feel better soon.
I too have been strugling for the last 8 months with strange symptoms including tremors, ringing in my ears, temp changes every evening I get a low grade temp, its all part of the dysautonmia, pots. I am now on a clonodine patch its helped just a little with the heart rate part but not enough I can't increase it as my heart rate goes too low when I lay down. Pots really does stink. I think also its an autoimmune response that triggers the pots and the fevers. I also had fevers prior to getting diagnosed with pots.
Can you elaborate a bit more on your flushing episodes? Do they ever coincide with the fevers? How severe is the flushing? Is it splotchy or a full coverage of the affected area, or does it vary? What area(s) are usually affected? How dark pink/red does it usually get? Does the affected area feel warm to the touch during the flushing episode?
What type of thermometer is being used to take your temperature? (Electronic oral thermometer, forehead "strip," electronic in the ear, electronic in the armpit, mercury oral, one of those electronic ones that they "swipe" across your forehead and then tap by your ear, or something else?)
Sorry I don't know the name for the swipe and tap ones, my doc office uses them .... like this:
I know that in the past, when I am having a lot of flushing, certain types of thermometers will "say" that I have a fever, but when the nurse at my doc's office goes and gets a different type of thermometer to double-check it, another type of thermometer might give a temperature that is completely different (i.e. lower)! So that's one thing to consider/rule out.
Since it seems to cycle with your menstrual cycle, have you spoken with your GYN about it? Are you on any type of medication to control your menstrual cycle. This is a very personal decision that each woman with dysautonomia is faced with, but because the menstrual cycle can often exacerbate the symptoms of dysautonomia, a number of women do decide to take some measure to control theirs in some "artificial" manner or another. There are a WIDE array of options when it comes to this, and likely your GYN can help discuss these with you. Some women use some form of hormonal birth control to menstruate less frequently during the year. Some women try to reduce the heaviness of their periods using hormones or endometrial ablation (as the blood loss can cause deficiencies which can certainly exacerbate our symptoms ... if you haven't been tested for related deficiencies, you might want to ask your GYN about that as well, since some of those symptoms mirror our symptoms). Other women opt to try to stop menstruating entirely by some means (I'm in this boat, though I'd already done so prior to my onset of dysautonomia for different reasons related to my reproductive system ... but I don't regret it one bit!).
If you are already on hormonal birth control, you may be able to talk to your GYN about the option of skipping your period for one month just to see if that changes the fever issue you're having at all. I can't stress enough that this is something you need to discuss with your doctor and do under his/her guidance, but it might give you insight into whether the issue is directly linked to that or not. Or s/he might have some other ideas about how the two things might be related and how to sort it out.
What medications are you taking? If you are on florinef (aka. fludrocortisone) it is more likely that you could be having suppression of your immune function (this can also occur with other steroids); if they are looking at your white cell counts to try to find signs of infection, they may be barking up the wrong tree. There are at least a few of us here who do not get elevated white counts even when we have a virus, bacterial infection, or both simultaneously. (Although, admittedly, I know at least for myself—as I'm one of the ones without elevated white counts—I also don't really run "fevers" except in the aforementioned instance of skewed results due to thermometers picking up my flushing.) I'm not sure, but by "ID" I'm thinking you mean Infectious Disease specialist? Is that so? I would think if that's the case, they'd be taking into account any steroids you might be taking and possible immune suppression. Just thought I'd throw that out there as well just in case.
Hyperthermia (which is not a bona fide fever, but a raised temperature in response to increased environmental temperature and your body's inability to properly cool itself) can occur in some people with dysautonomia due to improper thermoregulatory function, but that seems rather unlikely in the scenario you are describing. If it were hyperthermia it would not decrease in response to fever-lowering medications such as tylenol.
Well, that's all I've got off the top of my head. Let me know if you have any questions based off of that, and if I think of anything else I'll pop my head back in.
Thanks everyone for all your responses and advice. This diagnosis is new to me only a few months, so I feel like I am trying to figure out if POTS is my whole problem or if there is still something else underlying going on.
Meagan... your story sounds similiar to mine which is interesting. I am curious if you don't mind sharing your reactions to anesthesia and contrast dye. When I had sedation drugs it made my heart rate go from 70 to 160 and it made my bp go up and I didn't get sleepy. Then a few hours later, on drive home, it seemed if all the drugs came crashing in, my bp dropped, I was passing out and back in an ER for IV fluids. The contrast dye made my heart race when it was given then after I became orthostatic. No one has been able to give me an answer for this. I did get worked up for endocrine tumors b/c of these reactions and my fevers/ tachycardia and flushing, but that was negative. The only thing I can think of now is that if my autonomic nervous system wasn't working right,then I didn't respond appropriaterly to the drugs.
As far as my fevers go...I tend to be around 101-101.3 for about a week. tylenlol will bring it down some, but not break it. The rest of the month I still have some sort of low grade fever. I tried to see if the flushing correlated with fevers, but it didn't seem too. Sometimes I flush, bright red in face, like a sunburn, but my fevers are low grade. When I hit 101, I am usually hot to the touch, and feel crummy. The fevers are sometimes there for a few days too. In the beginning when I had strep and some virus, I wasn't registering fevers by oral temp. I was in my doctors office and I had a fever via an ear thermometer and thats what Ihave been using. I was going up to 102 with chills etc and oral temp not registering. I have asked a few doctors and most don't seem to connect anything. One has said a temp is a temp and the only accurate way is through a core temp which is through and IV. Everyone else in my house seem to correlate oral and ear temps, not sure whats up with me, unless I just drink so much I never give it enough time to register appropriately even though I try to wait 1/2 hour. My neurologist doesn't think my fevers are coming from POTS and he is a specialist in autonomic dysfunction. According to him I am too young and nuerologically healthy, which means I don't have an underlying neurological condition which caused the POTS. He doesn't see fevers unless conditions are worse (too sum it up) so I am back to my other doctors tryiing to figure it out.
I agree that I think my fevers came first too, whether it was a virus/ strep/ or some auto immune response that set it off. I did have a positve ANA titer (which is what they check for autoimmune disorders) but further work up didn't show anything further. Meagan, have you seen a rheumatologist? esp. with your muscle and joint pain. I am seeing an infectious disease doctor and have had an extensive work up. so we are a bit stumped now.
I do feel somehow its linked to my periods, or it just makes it worse. Per my doctor, I am now tracking my temps/hr/bp 3x a day and using an ovulation kit to try to see if correlates with my cycle. I see my GYN in a month and might start the pill. I do have a cyst on my ovary, they say its a simple cyst, but want to make sure its nothing more.
I truly appreciate everyones posts. It is nice to know that you are not alone. I am just trying to get my life back....I have been out of work, trying to get back soon and I have 2 young kids which keep me busy. Thanks again!
Considering the positive ANA, I would lean toward some sort of autoimmune/inflammatory process being linked to the fevers, but as I'm sure you know by now ... these things are a BUGGER to investigate and get to the bottom of sometimes!! Some patients do end up having to go to one of the top hospitals to see a "big wig" specialist to really get answers; I hope you don't end up having to go down that road, but if you want the contact info for the hospitals in the US that have full autonomic testing clinics, we have that on one of our health pages. Just let us know. We can also recommend which of those are preferable when taking into consideration needing to see multiple departments within the hospital (such as, in your case, needing to investigate autoimmune as well) because we can get the national rankings by specialty. (If you are outside the US, we also have info on a limited number of autonomic clinics globally.)
Since you say you are fairly new to the diagnosis, I do want to point out that you can find more information that you may find helpful in our health pages, which you can locate by clicking on the "Health Pages" link anytime you are here in the Dysautonomia Community or by clicking on the link below. Please note that we share our health pages with other neurology communities, so just look for topics specifically of interest to your condition. I also like to point out for those newer to their diagnosis that there are many different forms of dysautonomia and we welcome all of them here in our community; they vary greatly in severity and prognosis. Please do note that your type of dysautonomia (POTS) is a non-terminal form of dysautonomia, so please do not be confused or alarmed if you read about shortened lifespan as part of the prognosis of dysautonomia in anything in our health pages or elsewhere online. That is not relevant to the form of dysautonomia which you have.
You may also be interested in our symptom trackers on MedHelp if you haven't checked those out already. We have one specifically for autonomic disorders and others (like the blood pressure tracker) which may be helpful to our community members as well. You can even print them out to take to your doctor appointments with you.
I am sorry to hear of your troubles. I love all the advice the girls give on here and Heiferly always has a plathera of information. I wanted to tell you that I too had lots of fevers in the beginning and now only occassionally, but I also have had valley fever which has been resolved for the time being but I did continue to have fevers...and now it's rare to get them and my body temp runs really low. I did have a form of POTS in the begninning also, and my heart was a mess. But they took out my thyroid and that seems to have gotten better, but some things have gotten worse for me. And during my menstrual cycle is when it really goes bad. Inflammation everywhere, severe headaches, pain and a strange feeling in the back of my head and lots and lots of flushing and can barely stand up from being so dizzy. It also takes me weeks to recover from my cycles. Also before I had this flare up I could take any type of medication and now I can't even take tylenol without ending up in the hospital. I had an awful reaction to the ct dye also. I went into convulsions. I have recently worked my way up to children's ibuprofen and that seems to help, but I took a zantac the other day and had the same awful reaction of sweating, seriously low blood pressure, vomitting and then went into chills. It's so scary. I had a little bit of anesthesia for an endoscopy and the nurse said I was the first person in 30 years to throw up like I did. I did have two thyroid surgeries last year and they took extra precautions with me and I did well during surgery but had strange reactions when I came to. I have never had that reaction before to surgery. Just severe sweating and bad reaction to the pain meds. This is all new to me too and quite confusing. My doc doesn't know if eveyrthing is related to the dysautonomia either. They think I have an autoimmune disease but it's not the usual because nothing is showing. All the things that cause dysatuonomia are not showing up. Next, Mayo is going to do a DNA genetic panel to study my genes to see if they can find it there. I also wanted to tell you that a boy from...I think it was South Dakota...also got Dysautonomia from a flu shot. My friend from there called me to tell me about it and it was on the news. I can try to find it for you if you want. But that is interesting that you are having the same reaction. Just so sorry. Did you have any symptoms before that? Okay, take care and have a healthy evening. Hope you feel better soon.
I'm sorry it took so long to respond. I had a bad flare and have been down all week. My reaction to the CT dye was rapid heart rate and a flushing rash where they had to give me benadryl right away. The anesthesia was a different reaction. I had a hard time waking up and my colon and bladder were paralyzed. I was unable to use them without help for a few days.
I think I have finally found out what is going on with me and I will see and talk about it with my doctor on Thursday. After five years of fevers, pain, rashes, flushing, and now POTS almost all testing has been normal. They have ruled out every possible thing and it took my own research and persistence to figure it out.
This all started 5 yrs ago after I had a chiropractic back adjustment for the first time. Right after he popped my back, I felt sick...nauseous, dizzy, pain, etc... That night, I had a fever, vomiting, and pain and numbness down my right arm. That was the beginning of my fevers and it lasted 6 weeks along with more dispersed pain. We originally thought I caught a virus at the office and I was tested for everything from meningitis to possible neck/back injuries. I slowly recovered and a few months later, it all returned. There was more testing and nothing showed up. This went on for years and then I developed POTS. I have recently found out that I have vitamin deficiencies as well (b12 and D).
Needless to say, after many, many doctors and specialists visits, nothing stood out. Last week, I typed POTS, Vitamin deficiencies, fevers, and muscle pain into google and was surprised at what I found. All of my symptoms and syndromes boil down to Chronic Fatigue Syndrome and that is what I think I have. According to the CDC and SSDI CFS is characterized by muscle/joint pain, fevers, fatigue, fatigue after any mental or physical activities that keeps a person down for several days or weeks, postural orthostatic intolerance or other dysautonomias, unusual allergies to medications and food etc... CFS can be triggered by a virus, trauma, surgeries, etc...
I have high antibodies for Ebstein-Barr Virus which is another hallmark of CFS. I believe that the back adjustment triggered the dormant virus and caused the CFS. According to the SSBI website, someone is diagnosed with CFS if all other diseases have been ruled out (which they have for me), If the person has a dysautonomia such as POTS proven by a positive tilt-table test (which is me), has had muscle/joint pain without swelling for more than 6 months (me again), postexertional malaise (unable to function after physical or mental excercise) lasting more than 24 hours, (me), headaches (dido), sleep problems and self-reported problems with memory and concentration (all me). People with CFS have also been reported to have vitamin deficiencies as well.
I guess I'm posting this because it took 5 yrs to figure out what is going on with me and even though CFS has no cure, at least we may be able to treat the horrible symptoms. I wanted others here to remember this and understand that CFS can cause dysautonomia. The flu shot that you had could have triggered something in your body as well. There are other viruses that stay dormant such as CMV (which I also have high antibodies to). I went to an infectious disease doctor as well and he did many tests on me. He is the one who tested my EBV and CMV. When my antibodies showed high, I thought it was the answer to what was going on but he said it was nothing because the early IGM antibodies were negative which meant I had a previous infection. I didn't know at the time that it stays dormant and can reactivate at anytime.
I am sorry this is so long but I hope it helps others here who are vigorously searching for answers like I have been for the past five years. Here is a link to the SSA website describing the hallmark symptoms of CFS.
Thanks Heiferly for all your great advice and information! I am going to check out those websites you have given me. I am currently seeing Dr. Roy Freeman in Boston, who I think may be on the list. I just started seeing him a few months ago, so we are just beginning this together. I did have a full autonomic testing... which I was postive for the tilt table.
TKimber.. thanks for all your info too. It sounds like you had fevers too in the beginning and its from the POTS then I will not worry. Just want to make sure I am not missing something. As far as the flu shot, I didn't have symptoms before. The only thing I had was tachycardia, after I had my second daughter. I also had one bad episode after having a few drinks. We initially chalked it up to sleep deprivation, once I was getting more sleep it was better. I was fine for years with an occasional tachy episode. I got the flu shot, next morning almost passed out during a work out, then went to work and was flushed, chills and felt crummy. I didn't feel great for a few months with chest pressure, nausea, fatigue,flushing and chills off and on. It wasn't untill I got Strep that I got worse, then it took months before we went down the dysautonomia path. If you have information on the person that got it after the flu shot it would be interesting. Thanks for sharing your story. Its interesting your reactions to medicines too. this disorder seems to present in different ways.
Thanks again for all your advice and for sharing. It helps hearing from others. Hope everyone has a good week!
Just read your message, thanks for sharing with me. It sounds like the CT scan reaction was similiar...but other reaction a bit different. Its interesting to hear from others that they too have reactions to medicines, b/c I feel like it must be related. I have been thinking it could be CFS too. My symptoms are very similiar to yours and I also have antibiodies to EBV, all my CMV test have been negative so far. Its just frustrating that there isn't much to do except treatment of symptoms and there doesn't seem to be much more to do for CFS. At least hopefully you are getting answers after a long five years. Good luck and thanks for sharing with me.
I tried to find the story about the boy who got the dysautonmia from the flu shot, and I cannot find it anywhere. But I know it's true. Will keep looking. Do you get the fevers mostly during your cycle? Because that's mostly when I got them, but I don't know if it's related to dysautonomia, doctor isn't sure either. He thinks I have autoimmune autonomic neuropathy, and that can present fevers....but I'm not sure if it is a regular sign of dysautonomia. Also I wanted to tell you that I found it interesting that you said you had those episodes after a few drinks....I too will start a severe episode after any alcohol beverage. It started with just two drinks 4 years ago, and then one drink and now if I drink just three sips of wine...it is so awful. I miss just a little glass of red wine once in a while. I have not been able to have anything for about 4 years now. I tried a sip on new years and nothing. But a few days later drank a three sips of my friends glass of wine and it started. Of course not drinking is not the worst thing that can happen to a person. haha. But that is definitely related to dysautonomia the mayo doctor told me. I also had high antibiodies of Epstein Barr Virus. It sounds like everyone here does....now that's interesting too. I also wanted to tell you that the past four years I could only occassionally leave my home, go to dinner, cook dinner or walk around the block. I was seriously ill with the valley fever, cancer and autonomic neuropathy. I don't know what's happened, but I do have much better days, I still struggle a lot, the thyroid cancer is gone...knock on wood and the valley fever in remission..knock on wood...but it is nice to know that I can have a run of a few good days and I hope the good days just get longer and longer. And I hope the same for you that you can get better. Maybe that shot triggered something that could just take a while to heal. I pray it is something simple. Hang in there!
Thanks for checking on the flu shot, I appreciate it. Yes, it seems I do get my fevers right before my period. The only few days that I feel half way decent seem to be at the end of my period and the next few days. No one know why either. Right my doctor has me tracking them with my period and then we will see what he says. The drinking alcohol is bizarre too. I'll be honest, what I wouldn't do for a glass of red wine! Someday, hopefully I will. It sounds like you have been through a lot over the past 4 years. II am happy to hear that you were able to beat cancer and that your valley fever is in remission, hope you keep it that way. I am also glad to hear that you are having some good days now. I have only been dealing with this for a little over a year, and most days are a struggle. I am still out of work, not sure when I will be able to go back, I too don't get out much. I do whatever I can for my kids, with lots of help for from friends and family. I am lucky to have such a great support system. Thanks again for all your help and support.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.