kellygirl

ANCY, Thank you so much for sharing your experiences and also for the very informative article. This is one I will pass on to anyone who will be sedating me and to my primary care. I am terrified of being sedated and being able to feel the pain without being able to respond. Maybe I will just let the tooth hurt and pray to God that I never need a surgery for anything.

Today was my second dental visit since being diagnosed with dysautonomia/POTS... on both occasions I have required massive amounts of numbing (can't use Novocaine due to epi content, so dentist used and ester based numbing agent) to cover my pain. Today he had to stop the work and has referred me out to a specialist because even with oral administration of oxycodone/tylenol prescribed by EP in conjunction with numbing agents we could not achieve adequate pain control. I have had several root canals in the past and never encountered this type of pain and sensitivity or required as much medication to get through a procedure. My questions are has anyone else noticed increased sensitivity to pain since being diagnosed?. If you have had to have any kind of surgery, have you required higher amounts of anesthesia? If you have had surgery (oral or any other kind) have you needed more pain medication post operatively to achieve pain control? I am worried because I may need oral surgery now. also if you have had surgery has your POTS or dysautonomia symptoms been worse post op? Any feed back, experiences or know literature on anesthesia and surgical implications would be appreciated. Thank you.

I have had balance problems also. On occasion walking a straight line has been quite a challenge. I have also noticed in the shower I am extremely unsteady, so I sit in a shower chair to protect me from a fall I don't want to take. My EP told me dizziness is common.

My brain felt exactly the same way when I was in the hospital when I was initially diagnosed. When they gave me IV infusion of Lactated Ringers Solution it was so soothing and calming to my brain. I described it to the docs as my brain felt like it was getting a bath. The only food I find triggering at this point is pasta. It mentally and physically exhausts me and makes my heart rate increase, makes me dizzy, and gives me blurred vision. I looked online and the foods you mentioned are all high in potassium and iron. I know too much potassium can be irritating to cardiac cells. Not sure what is going on there, but something to mention to your doc. Or try just avoiding foods that bring on symptoms. I would never venture to even try caffeine. It would probably kill me!

I deal with depression too and for me it does not present as physical fatigue. If you are feeling physical fatigue and haven't had labs done, I would start there, especially with the thyroid. My emotional state when I am depressed, is more like I want to lay in bed because I am emotionally fatigued, not physically fatigued and it is just easier to stay in bed and isolate than deal with what is depressing me. Don't know if that makes sense, but I would rule out all medical and then go from there.

I also just keep confined to the couch or the bed on bad POTS days because exercising will make it worse... as I have learned.

Just to give you an example of chief complaints that I presented with over the years: Heart palpitations and racing heart... diagnosed with SVT excessive sweating (multiple times)... hypothyroid sensitivity to cold... extremities cold... the rest of my body hot... hypothyroid shortness of breath... anxiety sense of unrealness or alteration in perception of my sense in space... anxiety nausea (multiple times)... given zofran... never followed up on constipation feeling like I am going to expire on the spot.. like a black curtain is being pulled closed... (anxiety) blurred vision (hypothyroid) dizziness (multiple times) numbness and tingling in arms and fingers (anxiety) I even had my long term primary tell me to ignore 99% of what I am feeling 99% of the time because 99% of the time I am imagining it and it is psychiatric in origin. I am more inclined to believe the use of psychotropic medications over the years has brought about my POTS. Since I have been off ALL meds since July my mood has been more stable than it ever has been and slowly my POTS symptoms are subsiding, but on the few occassions I have resorted to taking my "old" sleeping pill (temazepam) my heart rate and POTS symptoms get much worse and it takes me 3 to 4 days to recover from taking a pill. Previous meds before the diagnosis were. Synthroid, seroqeul xr (mood disorder/anxiety), baclofen (muscle pain), temazepam (sleep/anxiety), atenolol (SVT)... now I am down to just synthroid.

I started taking levothyroxiene in my mid twenties when my thyroid blew from Lithium Carbonate toxicity (treatment for bipolar mania). I stayed regulated for over twenty years on exactly the same dose. Four years ago I started having wild fluctuations in my TSH levels. Because I have been on different psychotropic medications at one time or another for mood control I have to get thyroid testing monthly because psychotropic medications suppress the thyroid. The doctors then switched me to Synthroid. My optimal functioning is at 0.23 but when we moved my new primary did not listen to me and said that I was experiencing hyperthyroid when I was at 2.1 and lowered my dose. During that one month that my dose was lowered my TSH shot to 30. The doctors at the hospital that diagnosed me with POTS retrieved my medical records going back to 1999. After reviewing chief complaints and various labs and other medical conditions they determined that the autonomic dysfunction has been progressively occuring for at least 15 years. I have been off of all previous meds including psychotropics for "bipolar disorder" and anxiety since July and I have had no mood swings. The way my EP explained it to me is that alot of people present to doctors with various symptoms and the docs diagnose them with psychiatric disorders or anxiety disorders.. when we are anxious for a reason (like feeling like we can't breathe on our own, having a sense of unrealness (which sounds psychiatric) but it is NOT (in all cases). Endocrine said my POTS symptoms feel worse when my TSH level is high and it will exacerbate POTS symptoms. My T3 and T4 are always normal despite high TSH. I also had extremely high levels of cortisol in my system. The thyroid gland itself is without nodules, nothing wrong with the parathyroid. No tumors. No adrenal, or pituitary problems.

I have had hypothyroidism for over 20 years, over the past 4 years I have had an unstable thyroid, where my TSH level has fluctuated from 0.23 to 30 and have had to have numerous medication adjustments. In July when I was admitted to the hospital and diagnosed with POTS/autonomic dysfunction, my TSH was 30. The endocrine team at the hospital told me that although my thyroid was severely underactive at the time it was in no way responsible for the autonomic dysfunction. In fact autonomic dysfunction symptoms are often confused with hypothyroid symptoms, heat and cold intolerance, excessive sweating, visual disturbances, gastrointestinal distress, constipation etc... that the autonomic dysfunction was occuring concurrently with hypothyroidism. In fact they told me that a TSH level of 30 was the least of concerns at that moment. I just had my TSH level rechecked 2 weeks ago and it has only come down to 17.5 since July with two medication adjustments. In my case I think (I have no proof other than that nothing else is wrong with my thyroid or parathyroid or adrenal glands) that the autonomic dysfunction is making my thyroid more resistant or slower to respond to medication adjustments.

Well just reading about your day exhausted ME! LOL. I got diagnosed in July of this year. Since that time I have learned what my triggers are for certain symptoms, heat will make me dizzy and dehydrate me and amp up my heart rate and lower my bp, so I try to limit my exposure during the hottest times of the day. I try to get shopping done and appointments finished prior to 2:00 pm or do them after 6:00 pm. Being on the computer for more than 45 minutes at a time gives me blurry vision and gets me agitated and gives me brain fog, so I limit my time and do it in intervals, sexual activity seems to agitate my system so none of that business before bed or I won't sleep. I think once you identify triggers for different symptoms you can make modifications around it. I also tend to keep close to same activity level all of the time. On good days... sure I want to do more, but I know what the consequences will be, so I don't. Recently I have been taking saturdays and sundays as my on the couch days. I can't seem to keep weight on because just sitting upright is calorie burning for me so it it is hard for me to keep weight on. During the weekends I have learned to look forward to piling the couch up with comfy pillows and blankets, and settling down for a day of watching TV or movies, laying on the couch and getting lost in a novel or listening to audio book if I can't focus to read. Playing games on the computer. Eating high salt, high fat foods that I enjoy, staying hydrated, taking warm bubble baths and just taking care of myself. I don't mess with my hair or make up. I am actually learning to enjoy these days and looking forward to them as days to repair and rejuivinate my body from the activities during the week. For me this is all about pacing and moderation and patience and being kind to my body and working with it.

One thing POTS is teaching me is to SLOW down and that it is OK to slow down. It is teaching me self-compassion and how to take care of myself and not take my good days for granted. It is teaching me how to take care of my body. Prior to my diagnosis, I was a cigarette smoker of 30 years, I took prescription sleeping pills for over 25 years, I took psychiatric medication for bipolar disorder, I drank caffeine (a gallon a day between coffee, tea and Mountain Dew), I exhausted myself physically, and spent endless hours in worry about one thing or another (I have always been a worrier). I did not exercise regularly, I did not eat right (in fact sometimes only one meal a day). The day I was admitted to the hospital for the flare that took me down and led to my diagnosis, I stopped ALL OF IT! No more nicotine, no more caffine, no more sleeping pills or psyche meds. AND I AM GRATEFUL to have all that garbage out of my system. There are days where I am plagued with symptoms and there are days where I am not, but no matter what the day, I make sure to drink my prescribed amount, to eat correctly, to get rest when I feel like I need it, to take pleasure in watching a TV program or reading a book or listening to an audio book on days when my vision is bad. I miss hot baths but have learned to enjoy a warm soak. It was hard to change my mindset. Initially I was preoccupied with my symptoms, my heart rate, my blood pressure, but now I just listen to my body. I have also involved myself with a 12 step program for fellowship and support and spirituality and it has helped me to see things differently. I also practice mindfulness and connect with nature as much as I can. I have found delight in activities indoors when it is too hot outside. I have learned not to worry because worrying about anything including my symptoms only aggravates my autonomic nervous system and makes things worse. I understand your distress... I really do.... In the beginning I went through all the stages of grief like someone diagnosed with a terminal illness, and I still do sometimes, the frustration of not being able to function at the same capacity even in self care activities (I still sit in the shower most of the time), I had to get my hair cut short because lifting my arms over my head to blow dry and flat iron was exhausting to me. Losing sexual functioning, the ability to have my body be MINE! I told the nurses in the hospital that I felt that my body had been highjacked and in fact it has, but I do not have to allow my mind and my mood to suffer along with my body and keeping my mood elevated will in fact make the body stuff easier to deal with. I have also been seeing a therapist to help me deal with all of this. The anger toward myself and toward God for making this be my fate, the depression and sadness, the "what ifs" and "is this going to get worse as I age"... I just can't go there. For me keeping it one day at a time, one moment at a time helps, and remembering that even though we have been dealt this diagnosis, no ones life is guaranteed, nor is the length of our life. So just seize the moment and exist within in it and do the best we can in that moment, and breathe... breathing is so important. Deep breathing exercises, biofeedback, progressive muscle relaxation, I am doing it all, and it is helping both my mind and my body.

Thank you ANCY. I have not had a break in my symptoms since prior to my official diagnosis.

The past four days I have felt better than I have since February. My blood pressure right before this post is 109/73 with heart rate of 79 STANDING! Orthostatic vitals have been good. It seems a complete remission of ALL SYMPTOMS! I am able to read, in fact I have devoured an entire novel in 2 days. Able to focus and watch TV, able to exercise, stand in the shower (warm water... not testing fate with hot water). Does this happen with autonomic dysfunction and POTS. Are there symptom free days! The only thing I have been doing differently is making a really strong effort to let go of emotional stress. I re joined a 12 step program in July and as a result my mind set has changed. I used to be so stressed and always in a state of near panic. I have been practicing mindfulness techniques and lots of relaxation techniques. For those more experienced do you notice that your symptoms are worse when you are emotionally stressed? I am happy for the relief.. I am accepting the relief one day at a time and hoping that things stay balanced. It feels good to feel good. I know I can't push it, that I still have to do everything in moderation even though I feel like I want to be doing more.

The row machine at the gym gives a great whole body workout if you can handle it. I also use the recumbent bike, and do yoga and use resistance ball and bands.

Before diagnosing me with POTS the EP ordered testing for exposure to heavy metals and over 200 different types of toxins. Neurology also ordered testing on autoimmune disease and degenerative diseases... all which were negative.. in my case my POTS is idopathic. If you and your family and roomate have not been tested for heavy metals or toxins, I would discuss with doctors in ordering those tests. It seems strange.

Hi Navy Blue, My salt tabs are 452mg sodium chloride each. I am supposed to have between 3,000mg and 4,000mg daily. I take 5 sodium tabs and get the rest of my sodium in my food. I usually have 16 oz of V-8 juice in the morning which contains 980mg of sodium. Also doc told me I can titrate my own usage depending on how much I am urinating during the day. If I am urinating more I am supposed to increase my salt intake. I am doing between 3-5 Liters of fluid daily as well..

I have had SVT for 10 years. Mine was diagnosed prior to my POTS diagnosis. Docs used beta blockers to treat the SVT and I had very few episodes. Maybe a handful in a 10 year period. The beta blockers in combination with learning the valsalva maneuver were successful in treating my SVT symptoms. Ablation was discussed with me, but I avoided it because the SVT was not that disruptive. I did read somewhere that POTS patients don't fare well with ablative surgery. If I can find it I will post it on this thread. How high did your heart rate go with the SVT? I have been off all beta blockers since my POTS diagnosis in July of this year and haven't had an SVT episode yet. Hopefully I won't.

Hello Everyone, I am seriously getting bummed out. Due to the POTS diagnosis I have had to severely limit my physical activity. I am a registered nurse and am unable to meet the physical demands of my job physically. I thought that maybe I could go into some sort of remote work from home but now I am facing the fact that if I am on the computer for more than 45 minutes at a time, I go into complete brain fog, get confused, irritated, excessively fatigued mentally and physically, I lose the ability to follow instructions clearly after about 45 minutes, this is also true for reading a book or even watching a TV program. My attention span is short and I get exhausted. Has your diagnosis affected your cognitive ability as well. I really thought it was no big deal losing some of my physical functioning as I could rely on my brain... but I am finding that I cannot? If you have suffered cognitive loss, have you found any brain retraining to help increase cognitive stamina? I want to go back to some sort of meaningful existance and find some sort of work to do, but I honestly don't know what. I would be a danger to patients... even to pass meds at this point!

The EP is the only specialist I have. I will be seeing him on Oct 26th. I hate that others are having this problem, but really I feel better knowing I am not alone

Sue, I am experiencing the same thing with it being swollen down there. Not only does it look swollen, it feels swollen and it is even more pronounced when I am on my cycle. The Gyn said it didn't look swollen to her, but it is not her vagina. I know MY parts and they are swollen. And dare I use the anatomical word, clitoris? It seems to have retracted way up high. It swells up with stimulation, but has no sensation. I didn't know if this was circulatory blood pooling from autonomic dysfunction, but my doc seems to have not heard my concerns in regards to that. I know my anatomy just as any woman does and even though it may look normal on inspection by a doctor, something is off. I hope I get it figured out. Wish more docs were more educated about this whole disorder.

I get the same thing. I have been using deep breathing techniques. It is very unsettling. Sometimes I call someone and talk to them on the phone because as long as I am talking I know I am moving air in and out of my lungs and it decreases my anxiety to talk to someone.

Hello everyone, Just an update and thank you for your responses. I saw the GYN on Thursday, who had never even heard of POTS and when I gave her the brief explanation from the cardio point her immediate reaction was, well I don't think your heart rate would have any effect on your sexual functioning, then I had to go into explaining that it is from autonomic dysfunction, blah blah blah. Any way she ordered hormone testing which I am going to go for this morning. FSH, Estradiol, prolactin, hCG beta subunit, hemoglobin, TSH and a CBC. She thinks I could be perimenopausal. I am 46. Because I have been having unusual uterine bleeding, heavy flow 15 days out of the month she has also ordered a transvaginal ultrasound and wants to do an endometrial biopsy to rule out uterine cancer. She did ask if it was more difficult for me to reach orgasm to which my answer is yes and she said that is a typical symptom of perimenopause. I guess once the testing gets back we can address the lack of sensation down there, until then I can hope it is perimenopause or autonomic dysfunction and not cancer. I am so stressed out about all of these health issues. It has seemed my body has just fallen apart and it has been one thing after another since this diagnosis. My EP tells me that continued emotional stress will only exacerbate my condition, but how can one not worry when faced with so many unknowns and medical procedures! Today.... frustrated, scared, bad dreams last night. I just want all this health crap out of the way and behind me.

Hello, I also experience symptoms when I am falling out into sleep at night, especially cardiac. It is usually during this time that I will feel palpitations or like my heart speeds up. I have had my loop recorder in for under a week and the doctor has already called to tell me that I am experiencing PSVT during sleep. For right now I cannot do anything about it unless I go into irregular rhythym because my bp is too low to take beta blockers. I also experience not knowing how to breathe. It feels like my body forgets how to breathe and I have to consciously take over by deep breathing.. I have also experienced the JOLT or release of adrenaline while drifting off. I have mentioned these things to my cardiologist and she has brushed them off, but when I meet with the EP next week I will bring these symptoms up to him. I definately think they are related to autonomic dysfunction.... what else could they be?

I love my EP. Of course I do... he the one who identified my POTS and was the very first doctor to me that I am NOT CRAZY! What I like about him is that he not only focuses on the heart, but he is aware of the entire SYNDROME and is sensitive to how hard it is managing and living with the many symptoms. I actually look forward to my appointments with him because he GETS it and I know he does.. and he is so compassionate and informative. I got extremely lucky that I happened upon him during my hospitalization.

In FL you can not not only be a caregiver on SSI but you can work as many or as little hours as you wish with no cap on income for up to 36 months without being penalized or put up for review. But as was mentioned above it is always a good idea to contact the attorney that handled your claim or to contact social security directly. I am not sure if restrictions vary state to state.