Aeris5000

Good luck, Raisin! I just saw my neuro at CCF this week and he is referring me for a lip biopsy. I was unable to get the test scheduled while I was there, but I have the phone number for Dermatology to schedule it. It makes me feel better to know you are also going to Derm to get yours done. The doctor must be good if that's all he does! But you're right about the timing, my neuro said they're scheduling into Dec. and January next year. I'm a bit more worried about the healing process than the procedure. I had skin biopsies done on my leg over a year ago and the raised bumps that formed over the missing skin are still there. But if the incision is stitched, maybe there won't be a bump afterwards.

This is interesting because my EP did tell me that my POTS may go away once I hit menopause. Even it if that's true, that's at least 10-15 years away. I don't know if I believe him, but since POTS seems to react so strongly to hormonal changes, I can see symptoms getting better, maybe. I've had POTS for 2 years now, and I had one day of almost 100% normalcy back in April - it was the day before my period started. But I do think it depends on what caused the POTS to begin with. Mine seemed to start during a period of prolonged stress and anxiety, though I do think I have IBS and have borderline SFN. Vemee, I also experienced my first bout with anaphylaxis this past February. I had taken two aspirin and a dozen sprays of nasal saline (maybe too much?) to help out a bad cold, but ended up in the ER about a half hour later. Since then I've taken an aspirin challenge test and I had no problems at all. The allergist didn't think it was the saline. It's very strange, it's like our bodies randomly go into a defense mode and see perceive a something helpful as something toxic. Since POTS, I've added at least 4-5 things onto my health record's allergy list.

Yes, I saw him in June - he is an allergy specialist, but he may handle other immunological issues, too. I thought he was very pleasant and thorough. I saw him after a freak allergic reaction to either aspirin or old nasal saline this past March. I didn't see him got POTS specifically. He was pretty straight-forward and ordered me an aspirin tolerance test which I was able to do the same day. He also had me do a spirometry breathing test beforehand since I have mild, allergic asthma. I asked him about testing for food allergies, but I couldn't test that the same day with the aspirin challenge test. He was a very nice doctor and he even stopped in to check on me during the test, which took about 2-3 hours. You are in good hands, Darlene. :0)

I've had the same results, the low potassium and low CO2. I see Dr. Wilson at CCF Neuro and he noted in my labs to not worry about the low CO2. My potassium is usually 3.3, but it has been as high as 4.0 on occasion. I am not a milk drinker, which my MIL (a nurse) tells me is important. I eat a banana everyday and try to drink OJ at least twice a week.

Corina, I'm kind of the opposite! I can go on a 20 min. walk during lunch hour and feel awful afterwards, even though my HR goes no more 115 bpm on these walks. But I can ride my semi-recumbent bike for 50 min. with a HR around 135 and feel okay afterwards (not great, just okay). I can't run either. Even hustling across the street gets me out of breath, and a set of ten steps will get my HR up to 170. I would love to do dance aerobics again, but I don't know.

I have noticed I feel better at that same time of day, between 4:30 to 11:00 or so. I feel fine in the morning somehow, I can get out of bed with no problem. I could even drive to work with little problem. But around lunchtime, 12:30 to 1:00 is when I shut down. Today was a bad day at work, I was stuck my desk from 1:00 - 4:00. I managed to get up to go to the printer twice and I had to rush back to my chair pretty quickly. I didn't eat lunch til 4:15. It's so strange, it's like clockwork. I had one really good day about a week or two ago where I felt the most normal I've felt in two years. It was a Friday (usually my best days because the stress of the work week is fading) and it was the day before my period started. I wonder how hormones play into POTS - there has to be something there.

Good luck with you appt, Bigskyfam!! Glad you will have your hubby there to have your back. In my experience with POTS, all the specialists I've seen went right for the POTS diagnosis. All the internists I've seen all suggested anxiety. I don't know who to trust, really, so I'll have to trust myself. I know I have anxiety for sure, about real-life stresses. My mother is agoraphobic and has panic attacks in certain public places. I like to tell myself I just have anxiety, but my TTT was positive for POTS last year. So I probably have both, which feed off each other. My neuro thinks I have had POTS for a long time, but if that is true, other than having a fast heart rate with exertion, I had no other symptoms. So I do believe anxiety makes me feel worse. I am dizzy almost all the time, but not the same dizzy I think POTS patients experience. It gets worse when I am anxious. I work in cardiology and whenever I stumble across a patient with POTS, I freak out. I know some of my anxiety is related to feeling ill all the time, but a lot of it is about other things, ie. irrational fear of driving on the freeway, not meeting social expectations, stress at work/home, etc.

I actually work in the HVI dept at CC and have become a patient since all this POTS nonsense started. I definitely recommend a neurologist, mine is Dr. Wilson, who is extremely nice and did everything he could to get to the bottom of my symptoms. He has so many POTS patients that he has started doing group appts, which sounds interesting. I hear Dr. Shields is very good as well. If you do want to see an EP, Dr. Jaeger is the POTS go-to man. I've seen another EP who is very nice, but gave me his blessing to see Dr. Jaeger instead, because he doesn't know as much about POTS. Dr Fouad was an excellent POTS EP doc as well, but she retired a few months ago. Just wanted to FYI that since her name is in Dinet's physician list.

What disturbs me most is my constant "edginess" or anxiety. I feel this way ALL the time, it really never goes away. It's worse when I'm sitting up at the computer, like right now. I honestly don't know if I have POTS or panic/anxiety disorder. I guess it's possible I have both, but my HR has really been good lately. I have my worst symptoms when my HR is normal. And I've been more physical, climbing staircases at work again, with no bad physical reactions - just the darn anxiety.

I experience the same thing, dkd. My husband snoring someone gets me, but other loud noises don't faze me at all. Driving to work is nearly impossible because it involves the highway during rush hour. Even when I'm in the passenger seat, I imagine every car we pass will change lanes and side-swipe us. But I know anxiety is a big factor here, because I'm much worse when my hubby drives, because he is always lane-jockeying and speeds. My driving anxiety (and my POTS, really) started when he quit his job 1.5 yrs ago and instead of driving to work together, I was suddenly doing the scary drive on my own. The one thing I can't explain is loud noises and flashing lights. I watched the Grammy's this past weekend and there was so much strobe-lighting. Perhaps I have an anxiety that I will have a seizure? Never have had one, though. I still haven't been to a movie theater since I got sick because I worry about loud noises and flashing lights.

Northerndarlene, I had a few similar episodes to yours very early on in my POTS, well over a year ago. To me, it sounds like a panic attack or an adrenaline rush that happened in the middle of the night. I had several of these and they were quite frightening. I had to sleep with a nightlight on for a few days. But my symptoms were similar: had to completely void in the bathroom, and saw spots/visual snow as you described. I also remember shaking and feeling very unsteady standing up. I tend to get hives on occasion that come with increased anxiety, not POTS-related, so I understand the flushed feeling. I wasn't taking any meds at all during this time, so the symptoms were not side-effects. I also recall waking up in the middle of the night with my heart racing, but that was pretty much the only symptom. It would calm down after a few minutes and I would fall asleep again.

Thank you, everyone, for the very insightful info. I wish I had seen this thread a year ago, as my worst POTS symptom is daily headaches. I also work a desk job where I sit pretty much all day, and even though I feel strange head sensations every waking moment, I start getting worse around lunch hour, 3-4 hours after I've been working. I work with two PC monitors and staring at the tiny font for that long makes me feel worse. But if I get up and walk around just a little bit, the blood seems to work it's way to my brain a little better. I have a question for anyone who gets these "lack of blood/oxygen" kind of headaches. I'm still trying to determine if my headaches aren't anxiety-based, moreso than blood-flow related. What happens to you if you stay seated and don't try any counter-measures? For me, I almost always have a lot of pain at the base of my head that travels down my neck, which gets worse. I also have a lot of pain in my forehead and my eyes water and feel like they're going to pop out from the pressure. I start getting really agitated/anxious and feel like I could cry at any second. At the same time, I get super tired and feel like I could fall asleep at any second. I might get a scary adrenaline rush where I feel my heart race and I feel like I'm going to faint, but I have never fainted. I actually believe this is the heart trying to get blood to my brain quickly before something worse happens. I can usually stop an adrenaline rush from happening by just changing my posture quickly or focusing away from my work for a few moments. Despite feeling like absolute crap when this happens, my HR will only be in the 60's-70's during these really awful spells. They'll last about 30 min. or so, then I'll go back to just my standard, dull headache. As for counter-measures, drinking water doesn't seem to do anything, neither does crossing my legs. If I get to lay down, all that head pressure shifts to the back of my skull/neck and it is very uncomfortable. Even at night, I can rarely fall asleep on my back due to the pain, which goes away if I lay on my side. But I usually roll onto my back during the night and I'm fine then. Finding Hope, I hope you can find something that helps. It makes me wonder the physiology of our illness, and why our symptoms are so different when we're doing the same activity - sitting, in this case.

Sorry you'e been dealing with this, srb! I went through the same process as you. I started with a neurologist first, because my worst symptom was daily, persistent headaches. Anxiety/panic rushes was my second worst symptom, and usually stemmed from the headaches. My road to diagnosis was long, about nine months. My EP doc said he found it almost impossible to get a TTT approved for hospital employees with company insurance, which I happen to be. So he went the non-pharmacologic route with me, too, as he does not like to medicate unless it's really necessary. My neuro doc was way more persistent and found the proper ICD-9 code to use and got the TTT approved, so I went ahead and did it. Even though it wasn't really necessary, it did seal the dx, and my neuro had a bunch of different medications for me to try. He wouldn't have given me anything without the official dx, at least that's how it seemed. Srb, if you do want a TTT, you might want to try a neurologist. As much as I love both my EP and neurologist, my neuro has put in 3x more effort into helping me. Not that the EP doesn't care, but when he sees normal echos, normal EKGs, normal stress, etc., without any structural problems in my heart, there isn't much to go on. But with the neuro, I had a migraine spot on my MRI, and a just barely abnormal sweat test and punch biopsy. So he had a lot more to work with and treat. On the flip-side, as I favor my neurologist for getting the diagnosis, I prefer my EP cardiologist's treatment measures. I saw my EP yesterday and while he thought it was a good thing my neuro put me on a small-dose BB, he wondered why he went with atenolol, considering I'm trying to get pregnant. I tried mestinon for a short time last summer on my neuro's advice, but the dose was too high and made me feel awful. But I like having input from both specialties, though things can get a little confusing.

Clash, I saw my EP yesterday, too, and I pretty much bombarded him with similar questions. You and I seem to have a similar POTS presentation, as my EP told me that after lookiing at my tilt table results again, I have the "classic" presentation, which I believe means it is very common. I'll try to see how I can help compared to what I asked my doctor: 1. He didn't say what a good resting HR is, but my EKG came back with 90 bpm which he said was a little high. But I told him I was nervous going in. IMO, between 60-80 bpm is probably preferred. 2. I didn't ask him this particular question yesterday, but from what I've gathered between my EP and Neuro in the last 18 months is that, as long as you feel okay, HR shouldn't really matter. As long as it's within reason. For example, maybe not as high as 160 in the shower, but if it's 130 in the shower and you don't feel symptomatic, don't worry about it. Clash, your HR of 101-104 while carrying laundry is enviable. My hubby, who does not have POTS, has a standing HR of 95, so to add on some activity to that, he'd probably be over 110. 3. Regarding BB, I am currently taking 12.5 mg of atenolol at night. I get conflicting advice as my neuro wanted me to double it to 25, perhaps 50 mg., while my EP prefers 12.5 mg or none at all. I told him I'd been through cardiac rehab where my HR was kept under 155 bpm and I told him I bought a semi-recumbent bike last spring which gets my HR only up to 140 if I really push it. I told him I really miss my dance workout, but don't want my HR at 190. He said if I wanted, I can take 25 mg atenolol the night before, if I plan to workout on my feet the next day. Otherwise, don't permanently switch to 25 mg daily, as he does not think increased side effects from is worth it. As for HR, he wasn't concerned on it being within a range, he just wanted me to do what I can. He sees a lot of POTS patients that are VERY ill, some that cannot even stand. He's not worried about me at all, which I appreciate being as I do feel very fortunate. For the record, I tried getting some HR figures from the cardiac rehab team when I was there, but they went strictly by the age/Max HR chart. Good luck to you, Clash - let us know what you find out!

I work as a cardiology coder in one of the top POTS hospitals, and even with my company insurance, it took nine months to get my TTT approved. The problem was my cardiologist was using 785.0 for tachycardia, which will not work on a claim. He told me that he had never been successful in getting any employee a TTT. My neurologist, on the other hand, did get the TTT approved by my insurance, he used 337.9 which is for unspecified autonomic dysfunction. When I next saw my cardiologist, he asked how the heck I managed to get the test approved and I told him. He was pretty dumbfounded, haha.

Tinnitus was the first "POTS" symptom I noticed, back in July 2012. I still have it now, but it's much less than it was. I only get it in my left ear and I usually only notice it when lying in bed on my left side. I've had issues with that ear before POTS, though, as I had a rough wisdom tooth removal that knicked the nerve, which leads up to the left ear. I really do want to see a chiropractor this year, as I wonder if there is a pinched nerve somewhere in my neck or upper back contributing to this.

My upper, left lid has twitched before, the last time being the entire month of May 2013. It didn't twitch all the time, maybe a few dozen times a day. But I've had this symptom pop up every so often LONG before POTS showed up 1.5 years ago. I've chalked it up to stress and fatigue, not so much nervous system dysfunction.

My BP also fluctuates quite a bit for no real reason. This was caught in my tilt table, so I ended up being diagnosed with mild POTS and orthstatic hypotension. I have never fainted with either condition, though my BP very rarely goes below 100/60. I've been taking a teeny dose of 12.5 mg atenolol at night, and my BP seems to stay between 105/60 to 115/75. I've had less dizziness which is great, and have been taking the stairs a little more at work now. Anxiety is a factor for me, too, as I would get anxious at cardiac rehab and get a lot of crazy readings. I wonder if anxiety played a part in my tilt table readings as well, since I was pretty nervous during the test.

I wanted to chime in about recovery, because I believe it is possible for some. It really depends on what caused the POTS presentation in the first place, if POTS is truly a collection of symptoms but not a disease itself. I really don't know how I even got POTS, except my neurologist thinks it was prolonged physical/emotional stress. Starting in March 2012, I started a new job, had a health scare with my husband, was upset about him resigning from his job leaving me alone to support us, social pressure to have a baby, etc. Physically, I had a rough root canal in July, developed a penicillin allergy, and I was working out heavily for 60 min. a day, sweating all my nutrients away. Then I caught a bad cold from a coworker in mid-August. August 31st, 2012 was the day I started falling apart and it got worse into September and October. I felt like a living zombie, I wanted to die. I couldn't sit upright, could barely eat a meal, and had a throbbing headache that never went away. I was SO tired all the time. I would lay down for bed, shaking and feeling like I was going to have a seizure. I couldn't watch animated TV shows like South Park or The Simpsons because I couldn't handle the grating voices and bright colors. I like to joke that I missed the whole Gangnam Style fad, because I was at my worst during that time. I probably should have gone to the ER but I was so afraid of missing work. I actually did miss a lot of work but luckily FMLA saved me. I ended up seeing a lot of doctors instead. Some said it was anxiety, except my neurologist and cardiologist who both thought it was something more than anxiety. I didn't get the POTS dx'd until this past May, but that's another story. I think back to how I was a year ago and I really am doing a lot better than I was. I've been tested for many other illnesses, but the only thing I have is mild sensory neuropathy. I just missed a normal result on my ankle with the skin biopsy, and my forearm produced less sweat than normal on the sudomotor nerve test. I love my neurologist, but he gets a little too "doomsday", saying that the small fiber neuropathy is why I have POTS and that I will probably always have POTS. He referred me to his colleague in neuromuscular medicine, who said I really was okay, and that the SFN dx was a big "if" in his opinion. My neurologist also said POTS tends to get worse with menopause, while my cardiologist said that it should get better with menopause. I'm 37 and not near menopause, but I have to laugh at the inconsistent things I'm hearing. At this point, I feel like I'm on my own now, and that I just need to be positive and hope for the best. Tonight, I shopped by myself in a crowded mall for about 30-40 min. I haven't shopped alone in a big place like that in well over a year. I've done small, solo trips to Walgreens and fast food places, but nothing like a dept. or grocery store. But for the past few weeks, I've had fewer symptoms while shopping/working, so I hope I'm turning a corner. I'm going to attempt to see the new Hobbit film in the next couple weeks, which will be first movie I'm seen in a theater since The Avengers last year. I have ear plugs and I plan to bring my sleep mask just in case, but I'm excited to see if I get through it without them. I want to conclude by stating that everyone's story is different. I don't think "mind over matter" is really helpful for most POTS sufferers, because the reasons we have POTS are different. I seem to have a milder case of POTS than most, but I still feel "off" almost all the time. But I am determined to show my neuro that I can beat this. I have read that small nerve fibers can grow back very slowly, though my neuro said "No, they won't" when I asked him. But I'm staying hopeful! My heart goes out to everyone on the forum who is dealing with this. I get upset to know I've lost over a year of life being in constant discomfort, but then I think there are lots of people that have had POTS for many years. It's not fair, but it has helped me appreciate the little things in life. My trip to the mall tonight would be an annoying chore for most, but it was a big triumph for me. Happy Holidays to everyone and hopes for a healthy 2014!

Glad you are trying a different medicine, 1kate1. I was going to say I started taking 12.5 mg atenolol about a month ago and it's been fine so far. I was told to take it before bed, which helped with the initial drowsiness. I don't notice any side effects now. I think I was supposed to up the dosage to 25 mg, but I'm unsure if that is 25 all at once, or 12.5 mg twice a day. But I like 12.5 mg a day, my BP stays around 106/65 and my standing heartrate is always under 100, unless I'm coming out of the shower, then it still dances between 100-125. I've also noticed that if my heart has to work hard, it still does despite the atenolol. Climbing a big flight of stairs will get it up to 170 and my dance workout might get it up towards 190. I'd like to know if increasing my dosage might cut that high, working HR down a bit. I can't tell if I need more atenolol, or I'm just really deconditioned.

It's been so hard, but I've managed to keep a full-time desk job since I got sick in August 2012. I wasn't diagnosed until I got the tilt table test in May of tnis year, so I went about 9 months with just 20 mg buspirone a day for the anxiety. By the time I got the dx, I had already exhausted my 12 weeks of FMLA, so my neurologist granted me 7 weeks short term disability. Getting that time paid for was a nightmare, though, and I only got paid for half the time. Since coming back full time on 8/19/13, I've only missed four days of work, which I'm really happy about. I feel sick every single day, but I manage it somehow. Like Rebecca on the first page, I don't have a choice in working or not. My husband resigned from his job due to illness last year, before my POTS. Between looking for full time work, driving me to work, and taking care of me, I've had to support us financially. I'm blessed to work at one of the top POTS hospitals in the US, and I force myself to keep working. I just tell myself that I'm not going to faint, no matter how bad I feel. My coworkers have been pretty nice about the whole thing and my supervisor has been very supportive. But I still have to follow policy, and it can be stressful.

One thing I read about was keeping a rubber band on your wrist and snapping it when you start getting anxious. It seems to work, but I don't like the red lines it leaves on my wrist. I did this a couple weeks ago when I had to attend a team-building meeting at work. Interestingly, the HR lady conducting the meeting also had a rubber band around her wrist that she kept messing with during the meeting! So it's a good distraction for anyone with anxiety. When I start feeling like I'm losing it at work, I try the pressure point tricks. Try holding your wrist with your opposite hand, with you thumb and middle finger meeting over your pulse. Breathe slowly and evenly. Rubbing the base of my head and top of neck also helps massage another pressure point. This helps me a lot when I've gotten a spell while driving, or when I get dizzy looking at PC monitor for too long.

I had a very low Vitamin D level last fall, it was 16. It was the first thing I was diagnosed with when I got sick. I'm actually going to get this and my potassium levels re-tested on Friday - I'm really curious to see how I'm doing. I made my husband have his Vitamin D tested a couple months ago and his was 14. He has a hyperthyroid issue that is doing very well now, but he has no POTS-like symptoms like I do. His endocrinologist said his level was only a 5 at one point. From all the doctors I've asked regarding Vitamin D, it doesn't seem to cause problems but it exacerbates problems that are already there. I was hoping getting my Vitamin D up, I might feel better, but I feel the same. Looking forward to seeing what they are now.

Khaarina, I'm a big videogame fan myself! When I first got really sick last year, I couldn't play videogames at all. I couldn't sit up very well and had horrible headaches all the time. I started slowly back into games around November last year and I can now play anything without too much problem. The weird anxiety kicks in when I'm playing MP occasionally, so I've been playing more single player games. But I think if I had played 3 hours of a COD title without a break, I would have felt like you did. Last Friday, I played 3-4 hours straight of Gears of War 3 with some friends, and I felt kind of disoriented and dizzy afterwards. Somehow I can handle videogames better than TV. I think it's because as gamers, we have control of most of the action. One of the best things I've learned is to not play games within an hour or two of bedtime. It will give your body time for the adrenaline to balance out and it will be easier to fall asleep.

Welcome, Rima1! I am also new to the forums, but lurked for a long time. I think POTS has such a broad spectrum, it's hard to know what will work and what won't. I've been told that I have a mild case of POTS by the fact that I have never fainted. My EP doctor is not really concerned and just told me to exercise 30 min., 5 days a week, eat salt, drink water, and come back in for follow-up in one year. But my neuro doc, who is my main doctor in treating this, has been trying me on different meds and sent me to cardiac rehab. My med options have been kind of limited as my hubby and I want to have a baby. I also work full-time (with a struggle), so I avoid meds that have side effects that might compromise my ability to work. I'm currently taking 12.5 mg atenolol at night, which helps with the heart rate, but the other symptoms are still there. But I feel that I've gotten used to POTS at this point, and I manage to get through the day. I have seen some natural improvement in my symptoms and I've been taking more risks. I drag myself through stores and I drive when I feel okay symptom-wise. I did a 15 min. version of my old 2012 Dance Central workout this past Sat. and it was hard - I thought I was going to fall many times and my HR got up to 185 (take that, atenolol!). But I actually felt kind of good once I cooled down, and I knew that I am VERY out of shape. But I want to stress that everyone's different, and I wouldn't encourage another POTS patient to jump into working out like that. My worst POTS symptom is anxiety, and I've read how exercise is supposed to help it. It's getting my body to cooperate that has been hard. Basically, I've been trying to treat myself like I am normal, but I do know my limitations. I'll take one staircase at a time, but no more than one. I get up and take short walks during work, but I can't do the longer, lunchtime walk with my coworkers. I'm still doing cardiac rehab at the local hospital, which has helped, too. My next goal is to see a movie in a theater again, in time for the next Hobbit film. My noise/light sensitivities have gotten better - maybe not up to snuff for a flashy movie, but I'm hoping!