kellygirl

Thank you Sarah, great article

Thank you Katybug for sharing the previous links and gjensen for sharing. In reading the previous links some things clicked with me. In the year prior to the revelation of POTS I did experience oversensitivity and overarousal... usually connected with the emotion of anger, which I thought I was weird and did discuss with my physician and he was clueless. Talked about it with my therapist and she was clueless too. I don't know how knowledgeable my EP is in this area, but once the GYN rules out anything anatomically wrong and my hormone levels being ok (hopefully), I am definately going to discuss this with him.

Ophelialit, Thank you for sharing. I am actually hoping the change in anatomy is POTS related and not anything else... I only pray I am not getting blasted into menopause, I cannot imagine having to deal with that on top of exacerbation in symptoms of POTS right now. It may just drive me over the edge . Have your menstrual cycles changed? I had my cycle 3 times in one month (full cycle of 5 days each), with very heavy flow. In the months prior to the exacerbation and finally the revelation of POTS there were several months when I had just spotting or light flow, but I attributed it to hypothyroidism at that time because my TSH levels were high. No menopause yet.... PLEASE!!!!!!!

I am so sorry that you are feeling so frustrated and I can only imagine probably discounted by your doctor(s). All I can say is that I identify with your struggle. My former doctors all told me that my symptoms were all in my head, that there was nothing wrong with me and constantly referred me to see a psychiatrist or a psychotherapist. It is incredibly frustrating and depressing. I sit here 10 years later (when my POTS symptoms) first began and can only shake my head at all the docs that discounted me and my symptoms. Incredibly angry, but incredibly grateful, that finally, I found at least ONE doctor who knows I am not full of sh*t! I hope you find the help and support you need at Mayo. And I want you to know you were heard and understood here.

Thank you SarahA33. Today is rough, heart rate is high and dizziness. Spending the day laying in bed, eating, drinking and watching TV and trying to keep my mood out of the gutter. I try to be grateful for POTS. Prior to my diagnosis, I was a smoker, downed over a gallon of caffiene daily, didn't exercise often, didn't eat right, took a pill for practically every symptom I had. NOT ANYMORE! Though this syndrome is debilitating at times, it has forced me to clean up my lifestyle and my habits and perhaps saved me from an even worse condition like COPD, emphysema, or lung cancer later on down the road. I try so hard to keep it positive, but some days it is difficult to do that.

I hope that it is ok to discuss this here. I don't know who else to discuss with or ask about experiences other than those with the same condition. Has POTS affected your sexuality? I have noticed that since the serious exacerbation of my symptoms the actual physiology of my genitalia has changed. It seems engorged and swollen but lacking in sensation. Sex is not painful, but is not enjoyable and on the two occasions that I have ventured to engage in sexual activity with my husband since July, I wound up in the ER the same night with extremely high blood pressure and heart rate and being dehydrated despite not "doing any of the work" during sexual activity. I can only think that maybe the engorgement in the genitals is from blood pooling? I do not have distended abdomen. I am going for a GYN visit in a couple of weeks. I do not know if she is aware of POTS or even knows what it is. Has anyone else noticed changes in their anatomy down there and that sexual activity triggers off symptoms?

Thank you MomtoGuilianna and gjensen. gjensen... I do the same thing with the V8, my husband brings me 32 oz first thing before I even get out of bed and I chug it to get my first jolt of sodium and fluid. I try to get at least two liters in me within 4 hours of waking. Initially I was drinking fluids up until the time I went to bed, but was waking 6 or 7 times a night (or should I say, not sleeping at all, to go to the bathroom). Doc told me not to push the fluids after 5 pm but that I could drink normally with dinner and if thirsty and it fixed the middle of the night bathroom trips. She did order compression stockings, however my insurance does not cover them and they are $140.00 for the waist high which is what she ordered and I cannot absorb that expense as of yet. I have been considering trying the less expensive kind sold at retail drug stores but wasn't sure if they would be as effective.She ordered 30-40mmHg compression. The doc kind of did tick me off during the TT. I reported dizziness, and she said.... "your bp and heart rate is good" when I asked her what it was she said it was 111/78 and heart rate was 140.... should I not have been experiencing dizziness with a heart rate of 140 and 20 minutes of standing? It seems if my heart was pumping at that rate... brain perfusion would be somewhat compromised. The good news is that the female doc is the cardiologist and the male doc is the electrophysiologist. When I saw him today for the monitor implant, I requested to see him in the office from now on because he is sensitive to the entire syndrome and symptoms and not just focusing on the heart rate and rhythm and blood pressure. It was extremely validating in the hospital for him to tell me that despite the many doctors telling me I was crazy and that it was just anxiety, that I was not crazy, that I was not imagining my symptoms... that they were real! oh yes and I love sucking on potato chips!!! Dill flavored are my favorites. I have found that although not necessarily healthy, most frozen foods are packed with sodium. My husband was recently diagnosed with A-fib and his heart rate runs in the low 50s so it is quite interesting grocery shopping. He is on low sodium, low fat and I am on high sodium, high calorie, high fat. I have lost 15 pounds from the constant tachycardia. I am burning calories just breathing, so maintaining weight and gaining is quite a challenge.

Hi everyone, Just thought I would update you all on my TT results and experience since I reached out here because I worried about nitro. Fortunately my doctor was supportive of me not taking nitro. Instead I got to stand for 45 minutes. I had a negative test for neurocardiogenic syncope. I had a constant run of sinus tachycardia. Heart rate was 68 lying, upon immediate standing dizziness, but no drop in bp, but initial standing heart rate was 91. It fluctuated between the 120s and 140s the entire time I was standing. I did experience symptoms of blurred vision, nausea, weakness, racing heart and dizziness. Highest bp was 138/81 and lowest was 90/56. I also had an intradermal heart monitor implanted today which records and sends data daily to my docs office. If heart rate goes below 40 or above 140 I will be notified by docs office, and if I feel any events I have a personal assistant to place over the implant to record the event that I feel and I can transmit it to docs office. I am relieved about the TT results and also relieved to have the implant, as I can finally part with my bp and heart rate monitor and be less vigilant . Instructed to remain at 4 Liters of oral fluids daily and 4000mg of sodium and to stay out of the heat since it is my biggest trigger of symptoms. I can't wait until summer is over... or is it ever really over? I live in Florida! Maybe time to relocate to Alaska! So I came home and chugged down 24 ozs of V-8 juice (1800mg of sodium) and ate my hungry man salisbury steak meal (1300mg sodium there). 2 more liters to get in by 5 pm! Does anyone else feel freaky going through the grocery store reading labels for those highest in sodium content?.

Glad you are here and you are in the right place. I have been struggling with symptoms for over 10 years and it was always chalked up to anxiety. Several of my docs even told me to ignore 99% of what I was feeling, because my mind was feeding me garbage. My symptoms ranged from splitting migraines, absolutely zero appetite, extreme nausea, feeling alterations in breathing pattern, dizziness, excessive sweating, blurred vision, extreme fatigue and heart palpitations (I do have SVT). Docs just threw prescription meds at me for the various symptoms and told me as long as I was breathing and conscious I was ok, so to go about my daily activities. I was finally just diagnosed in July of this year. Battling the symptoms is a daily struggle, and some days are better than others. I live for the good days, and just treat myself with extra care on the not so good days. POTS is teaching me to be patient with myself, to take care of my body in ways that I have never have before and to nurture myself even though it is incredibly frustrating.

Thank you for your replies. I have decided to not take the nitro for the test. When I was in the hospital and they wanted to do the test I refused once I heard they would be administering nitro. The truth is, I have had a bad gut feeling about taking it. It is also my body that will feel bad and my vitals that will be off for some time due to the administration of the nitro and I don't want to put my body through anymore trauma. I have educated myself on the drug. I have read that it should not be administered to patients who are dehydrated or hypovolemic and I am both. They already made the diagnoses of POTS with orthostatic vitals and other symptomology, so they can use that information.... hopefully.

I also have white spots on my back and that is the only place I have them. The dermatologist told me that they are just areas of hypopigmentation in my skin and nothing to worry about. I have had hypothyroidism for over 20 years also, but the white spots have been a recent development.

Hello Everyone, I am so relieved to have found this forum and terribly scared about the administration of nitroglycerin during the tilt test I have coming up on thursday. Can anyone share with me what symptoms to expect when they administer the Nitro? I was diagnosed with POTS in July through orthostatic vitals. My resting heart rate is in the 80s and on standing immediately shoots up to over 130. I have never experience fainting. My main concern about the nitro is that since before the diagnosis I developed an oversensitivity to meds I had been on for years.. enough that I can no longer take them as they accelerate my heart rate, and lay me out flat for days. I cannot even take a tylenol without it messing me up. I am afraid of taking it, and am considering telling them that I will not take it.

I have had this happen to me several times. For me it has only happened when I am lying down in bed. It feels like a surge goes through my body, and I feel extremely agitated and like I have to MOVE. Almost like a fight or flight response and my body doesn't know whether to fight or to flee because it wants to do both. It is accompanied by confusion and severe restlessness. My heart rate increases and I feel the need to participate in some sort of physical action and usually can't because I fear elevating my heart rate even more. It is frustrating.