babettess

Hi All, I am returning to CC to have my testing done this week. Just wondering if anybody else is going to be there on Thursday or Friday? Robin Williams just had heart surgery there so I might look him up while I'm there. HaHa! I doubt I would have the energy even if I could get past security. The tests I'm having are as follows: Thursday afternoon I'm having- Stress Echo QSART Friday morning I'm having TTT (Of course-another one ) Hemodynamic Blood Volume test Heart Rate Variability Test Anybody have any suggestions/comments on any of these tests?? I'm familiar with the TTT, but I don't know much about the others except for what I've read. Thanks, Babette

Great idea! As I'm sitting here with my heart palpitating along, it was reassuring to see that 23/30 (if my soggy, foggy brain remembers correctly) people also have palpitations. I am anxious to see the results as more people vote. Thanks, Babette

Hi Michele, Sorry you are having such a rough time. Please see your gynecologist to get the endometreosis/other conditions ruled out. There are also other female conditions that can cause such painful periods. I'm sure either the period affects the POTS or the POTS affects the period in one way or another. For me, my POTS goes crazy during my period and I feel terrible. It seems like the heavier my flow the sicker I am. Hang in there and get yourself checked out. Best wishes that you feel better soon. Babette

Hi Ruekat, Have you thought about whether discontinuing the Paxil could be causing some of your problems? Both my husband and daughter were on Paxil for a while and both experienced severe withdraw effects. I know you were only on it a short time but if you stopped it suddenly perhaps it sould be adding to your discomfort. Maybe ask your pharmacist. Best wishes that you feel better soon. Babette

Hi Jump, I also have low vitamin D. I started taking 50,000IU's once a week for a month and now once a month for forever, I guess. I did start feeling better after I had taken the Vit D for about a month. I also have less muscles aches and pains. Hopefully you will have more energy. Best wishes that you feel better! Babette

Hi Sandi, I hope you get some answers and feel better soon. One thing I think you should ask whatever doctor you see is to check your vitamin D level. I started prescription Vitamin D because mine was low and it didn't cure my aches and pains but it sure helped with the center of the chest crushing pain and some with my muscle aches and pains. Does the center of your chest hurt if you press on it?? Mine was soooo tender to the touch and the vitamin D really has helped with that. Research is now showing a connection between muscle aches and pains and low vitamin D levels. Of course you have alot more going on than that. Just a thought. Babette

Hi Michele, I worked on a whole PM message for you earlier and couldn't get it to work. (I had copied and pasted your list onto WORD and then highlighted our similar symptoms and when I went to post it wouldn't work.) Brianala and Broken Shell did it and made it look so easy by just changing the color. So here goes.......My symptoms that are similar to yours are in purple and symptoms that I have added are in red. Everyday Symptoms (there are a lot, I know.) ? Malaise ? never feel good, vague feeling of something ?not feeling right? ? Extreme pressure in base of head/neck (usually happens upon standing or bending over, sometimes in conjunction with becoming lightheaded but not always) ? Lightheaded constantly- blood pressure always low. Drinking a significant amount of fluids or taking in salt has no effect ? Dizziness off balance/wooziness/feel like I'm moving when I'm not ? Feeling as if I can't take a satisfying, deep breath ? Feeling like I need to catch my breath, need to take a deep breath ? Feeling ?out-of-it?, Brain Fog. Like I am living in a dream. Everything looks fuzzy and I feel like I am just very ?not with it.? ? Heart pounds strongly after standing or minimal exercise, causing the need to stop and take deep breaths. (Echo showed ?sluggish heart? but Stress test was negative) ? On the verge of syncope on multiple occasions ? Fatigue ? Difficulty swallowing- feels as if muscles in throat just freeze ? Slurred speech, problems getting out what I want to say ? Feeling as if someone is shaking my head back and forth, brain feels ?wobbly?- usually happens after turning my head quickly but not always ? Creaking/cracking in base of head/neck (usually upon movement but sometimes while head and neck are still) ? Increasingly significant tinnitus/pulsing sensation in ears (with my heartbeat)? Ears constantly ?go out?- Everything will sound distant ? Left ear feels ?full/stuffy?, constant need to ?pop? or ?crack? ? Shooting pressure, occasionally in conjunction with pain, up the left side of neck ? Stabbing pains in head, occurs for a few seconds then dissipates. Sometimes this will happen a few times sporadically, other times over the duration of hours or days ? Visual problems o Trailing vision o Shaky vision o Flashing vision o Extreme after images o Bright lights, clouds o Black/neon spotso Palinopsia (visual snow) o Occasional episodes of double vision o Blurry vision o what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes ? Muscle twitches/spasms ? Tremors (mostly in stomach, not visible to the eye) ? Occasional teeth chattering when I start feeling sick, then come the tremors, nausea, and the chills ? Nausea, lack of appetite, loss of 25 pounds over the course of 4 monthsI lost 15 pounds in one month ? Occasional neuropathy - shoots down arms ? Irregular menstrual cycle (ranges from 18-41 days) ? Feel very ?hypersensitive? to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired" ? GI Issues- I'll leave it at that ? Bladder pressure/tingling sensation after urinating on occasions ? Feel full all the time, no appetite, cannot eat large meals anymore ? Head rocking (my head shakes up and down in what seems to by rhythm with my pulse) ? Throbbing/pulsing sensation in my head/neck/face (it feels like I can feel my pulse in my brain) ? Sensation when I'm laying down as if I am rocking on a boat or the bed is moving, feeling like my blood is rocking up and down my body ? Body rocking while sitting up(my body actually rocks back and forth involuntarily on occasion) ? Problems sleeping ? Exercise Intolerance, I used to exercise all the time, now sometimes I need to take deep breaths after walking up the stairs. My visual problems also get worse upon exercise; it looks like the floor is falling in everywhere I look. ? Cannot tolerate the heat/cold. (I get extreme pain in my ears and head after being out in the cold for a brief period of time.) Chest pain/pressure Neck/chest pain & pressure. Feel like I'm being strangled. Legs tremble forget words, forget how to spell, walk with my legs spread wide out at times (when I'm having a bad spell) Feel horrible during my period especially if I have a heavy flow And many more that I'm forgetting at the moment. "Episode" Symptoms: (after alcohol use, being in the heat, menstruation, possibly sugar or too many carbs?) There is no way that I can describe these episodes, it feels as if I am dying. It starts with hot flashes that move like a wave over my body (feels like a poison is flowing through my veins). My teeth start chattering, I get nauseas, tremors in my stomach, sometimes have g.i. issues and NEED to go to the bathroom, and muscle twitches. Sometimes it stops at this, although after alcohol use (which I no longer drink) it only gets worse. I feel like I can?t catch my breath, my heart POUNDS in my chest, I feel weak and on the verge of passing out. My extremities go numb, I get extremely nauseas, I feel like I am very out of it like in a dream-world, my ears will begin ringing, Sometimes my legs tremble horribley. and I get severe jerking of my limbs/muscles twitches/spasms. These episodes last anywhere from 30 minutes to hours. Eventually, the heart rate will decrease but I am left feeling drained, exhausted, tired, and very "out of it." Only way to describe these episodes are that I feel like my body is shutting down and I am dying. I can't imagine feeling anyworse than when I am in the middle of an episode. I do anything I can to avoid these, and although I get them randomly from time to time, they have drastically decreased since I stopped drinking alcohol a year and a half ago. I have never drank so I don't know about that. I've always been told that these"spells" are panic attacks but I know they are POTS attacks. For me the off balance/woozy/feel like I'm moving; the swallowing difficulty; the chest pain/pressure; exercise intolerance and the fatique are the most disabling symptoms. I do get very tachicardic with any exersion. All of my symptoms can come and come without warning and very quickly. This makes it very hard to plan anything as I never know how I'm going to feel on a minute to minue basis. Sorry it took me so long to get back to you. Please PM me if you would like. Babette

Hi, Sorry I can't help you with what your test results mean. I am getting what I think are the same tests next Friday. Did they send you copies of your test results or how did you get them? Also, did you do all the tests in one day and what were they like?? If I remember right- I think you posted about your test experience before, but with my foggy,soggy brain-I'm not sure. (I know we have PM'd about Cleveland.) I'm sure somebody on here will be able to interpret your results and definately quicker than you will probably hear from your doctor. Best wishes that knowing the results will help formulate a treatment plan that helps you feel better. Babette

Hi Gayle, I too have anxiety that I feel is caused by what feels like my "fight or flight" mechanisms being on overdrive. My anxiety always starts with physical sensations and then the fight or flight kicks in and off I go....into what doctors call a panic attack and I call a POTS attack. You are not alone in this. I would not apologize for the anxiety but I would explain it to your doctor as he can only help what he knows about and he needs to know about everything so he can see the "big" picture of how this affecting you. Best wishes for a productive visit when you see the doctor. Babette

I get this sensation at any time but it is worse in stores, malls, meetings,movie theaters, restaurants. I'm am usually a very social person and am not anxious around people at all. I used to give presentations and sing in public so I know it's not a social anxiety thing. I also feel kinda of like I'm "floating" or that the world is not attached correctly to it's axis and I can feel it revolving. Wierd feeling!!! This is actually the most disabling of my symptoms as it is hard to do anything when you feel like you are constantly moving and you know you are not. It's kinda like you feel like gravity isn't holding you securely to the earth. I feel this way most days. I no longer drive on most days because of this weird sensation. I could handle the tachycardia, shortness of breath, chest pain and fatique a whole lot better if my body would stop with the anti-gravity experiment. Smiling and floating, Babette

Hi Sophia, Did I listen to you on "radio blog spot" or something like that??

Firewatcher, I sooooooo enjoy your posts. They make me smile. Good luck picking out your endo from the list. You got some great choices to pick from. If you are taking a poll I vote for the vet. Babette

Thanks Ernie!! Best wishes to you! I read your post from your trip to Mayo. I don't know how you did it alone. I do hope you get great answers and some financial help. I can't believe what your tests cost. Guess I will have an idea soon! AAWWGH! Babette

Hi Poohbear, This is a very informative poll. For the last question about working I put other. The hardest thing for me is the feeling that the world and I are moving. Along with the fatique, chest pain and shortness of breath this it makes it hard to function. Thankfully I work part-time and mostly at home. I only have to attend meetings and do presentations a few times a year. If it weren't for being able to set my own schedule, I would not be able to work at all. Thanks! Babette

Hi Everybody, Well I'm back from my appt. at Cleveland Clinic. It was a long trip but hopefully will be worth it in the end. I only got to meet with the doctor and I have to go back for testing so I really don't know anything more than I did before I went. I do have advice for anybody planning on going....... Take a wheelchair as chairs are not provided at most of the check in/check out desks and you will have to walk alot. Take plenty of food and drink. I had to wait for hours in the exam room as the doctor kept getting called out. I crashed before we made it to the checkout desk. Only you guys/gals will understand when I say ,"What I would have given for a place to lay down ????!!!!" I had eaten all my snacks and drank my water before I was even seen by the doctor. Call the doctors office to see if you can be scheduled for tests the same day or day after your first appointment. I had called the main cardiology number and asked them if I needed tests could they be scheduled for the day of the appt. and they told me I didn't need any tests. Well then the doctor himself asked if my tests were scheduled for the next day. I told him that I had called and what had happened and he said I should have called his number. So now I have to go back on March 27 for my big day of tests. I had blood work before I left CC and will do a 24 hour urine catch here at the local hospital. On March 27 I will have another TTT, a blood volume test, a hemodynamics imaging test, a Heart Rate Variability Test, a QSART and a stress echo. I will then meet with the doctor at the end of the day. (If I survive, that is. ) Of course I will have to wait for the results of some of the tests. I feel like the doctor knew what he was talking about and I think I will like him. I wasn't thrilled about him getting called out of the room so many times, but I know that happens. He did say CC is one of the few places that do all of the tests that I am having done. I am scared of getting the tests, but anxious to get some answers. Anybody have any advice regarding these tests???? I'm very sensitive to meds and very scared about having to have the dyes. I will keep everybody updated. Thanks for all the support. Babette

Desparate Mom, My heart goes out to you and your daughter. I have recently been diagnosed with POTS after not being able to get out of bed for over 3 months. My 17 year old daughter is scheduled for a tilt table test this coming Friday as they think she also has POTS. She's not as bad as I am but her life has still been disrupted. I'm so scared for her as I don't want her life to be as difficult as mine is. I would take a double dose of POTS just to keep her from having it. My oldest daughter is severely disabled. I have had to fight for medical care for her since she was born. Keep good records. Organize her medical records in a binder so that you can update her symptoms, doctor visits, test results, etc. The more detailed records you keep the better proof you will have about her condition. The best suggestion I can give you is to please share this forum with your daughter. If you can at all - get her to the computer or the computer to her. Maybe actually seeing that other people feel like she does and that these other people care about her will give her a boost. This forum has been the only thing that has given me hope. When I couldn't lift my head off the bed and couldn't even reach my fingers out to send a reply, I could still read that I wasn't alone. I have learned so much on here that I actually believe, no I actually am sure, that I know more than my doctor does about POTS. Keep reading and searching. Print out your post and the replies for your daughter if she is unable to get to the computer. Let her know she is not alone and others are here for her. Ask questions on here that she wants the answer to. Show her the videos about POTS on youtube. Add some easy humor to her day. (You don't want to get her over stimulated, of course.) Wear goofy sunglasses and a lampshade on your head when you get her a drink. Serve her drink in a pretty glass. Add fresh flowers to her room. Put her favorite music on an MP3 player. One of my favorite things to do (when I couldn't really do anything) was to listen to relaxing music on my MP3 player. It was an inexpensive source of enjoyment since I like music. Build on the strengths she had before she got sick. Please take care of yourself. I know how easy it is to forget about yourself when you are taking care of someone you love. But you have to be well to be able to take of her. You and your daughter will be in my thoughts and prayers. Babette

Hi, I have the "la-la land" feelings in the morning if I don't get right up. I have trouble going to sleep at night but I am not bother by vivid dreams too often. I used to have extremely vivid dreams while taking atenolol if I forgot it and took it too late. Sorry I can't be of more help to you. Babette

Hi Casey, I am headed to Cleveland to see Dr. Jaeger who works with Dr Fouad. I am going on Monday. When are you scheduled to go?? I will be happy to share info about my appointment with you. I am wondering the same things that you are. Babette

Hi Babette, I am thinking of heading to the Cleveland Clinic. I understand that Dr. Robert Shields is the head of the autonomic center there. Can you please let us all know how your appointment there goes and what the doctor has to offer? Thank you! ~ Broken_Shell Hi Broken_Shell, I will be happy to let everyone know how my visit goes. I am see a cardiologist in the syncope lab. I am very excited to be seeing a doctor that actually knows what POTS is. Babette

Hi, I was so glad to read your post. I am going to the Syncope Center at Cleveland Clinic on Monday. It's good to know that they are knowledgeable and understanding. I have never heard of a sitting tilt table test. How interesting! When I went for my first tilt table test, the nurse doing the test couldn't get the heart monitor to work while I was being tilted so she finally put me back down. After she got it to work I was tilited and got to do the whole test all over again. How fun!?!? I can't imagine doing two tests purposely. I wasn't given any meds with my test though. I have't had the QSART or breathing tests at all. Did you know ahead of time that you were going to have tests that day? I have called and asked if I am scheduled for any tests and they said no. It would be nice to know if they just order the tests at the appointment and then if you get them done that same day or if you have to go back. I will have a 5 hour drive to get there so I am going up on Sunday, but I need to know if I will be doing tests after my appointment so I can make extra arrangements for the family if I am going to get home really late on Monday night. Hubby is taking me and has to work Tuesday. I am sure happy for you that your visit is over and that you might get some valuable information from all they put you through. Hope you recover quickly from all you endured. Babette

Hi Michele, Reading your post was like reading my diary!! It is so amazing what weird symptoms POTS can give you. I am headed to Cleveland Clinic in Cleveland, Ohio on Monday. I'm not sure how close you are to them. I will let you know how my appointment goes. I'm glad you found this forum. I know you will appreciate the people on here as much as I do. Hang in there. Babette

I go to Cleveland on Monday, March 2. Please let us know how your appt goes. Is it in the syncope clinic? Thanks, Babette

Thanks Rachel, I will look at Walmart and pick up some of the packets. As far as the water/salt loading & hose I just can't seem to "feel" the difference. Thanks so much for your help!

Hi Everyone, I am so blessed to have found this forum. Some days all that gets me by is knowing that someone out there feels the same way I do. I sure wouldn't wish this on anyone-but it does help to know I'm not crazy with all my weird complaints. My husband doesn't understand at all and talking with him usually ends up stressing me out. He does help take care of me, but he is clueless when it comes to understanding what I'm going through. On to the questions-- My cardiologist(who has very limited knowledge about POTS) wants me to start taking Florinef. I have very weird reactions to most medicines and usually only take a fraction of the usual doseage. He assured me that it shouldn't cause me to have any side effects unless I am allergic to the preparations with which the pill is made. Then he told me that he ordered the smallest doseage available. He told me nothing else about the drug. Well investigator that I am, I find out that the drug lowers potassium and that electrolyte levels need to be checked periodically. I have had a potassium defiency in the past on several occasions and this is in my chart. He told me nothing about needing blood work. Also, I found out that the Florinef is a form of cortisone. Well the last/only time I ever took a form of cortisone was in a shot my family doctor gave me to get rid of a rash/virus that I had. I had a weird reaction to it and felt "high" until it wore off and then I crashed badly with a high heart rate, anxiety and extreme shakiness. I picked up the prescription and the pills are scored for breaking so a lower dose is possible. ****I am not starting the medicine until I go to Cleveland Clinic the begining of March and get their opinion. So my questions are........ Does Florinef cause the same side effects as cortisone? How soon does it start to work? Is it immediately or does it have to build up a level in your blood? Where can I get some of the individual electrolyte packets that have been mentioned? Does water/salt loading make you feel better immediately or do you feel their effects later-like the next day? Do compression hose make you feel better immediately or do you feel their effects later? Thanks for all your advice! Babette

Hi! Just wanted to tell you that yes I have brisk reflexes too. I have just recently been diagnosed with POTS but have always had the brisk reflexes. Babette