LindaJoy

Thanks, everyone. Hey, Nina, I was talking, too, with my loooooooow pressure: "I don't feel good, I don't feel good!!!!!!" Then, I started crying. My chest felt like it was burning, my hands were dripping sweat, I saw fuzziness in front of my eyes, my knees started to buckle, I couldn't get a deep breath to save myself, I felt like I would throw up any second. It was an awful feeling! Frank--Dr. Fouad said she wasn't sure if I have autonomic involvement since I only had the tilt table so far. I go back in a couple of weeks for other tests--blood, sweat test, etc. The problem is, I'm allergic to shellfish, so I can't have the iodine dye that they use in a lot of these tests, but Dr. Fouad said that she has alternative tests that will get some results. She has ways of making my body talk! I'm still not sure about the Florineff. I don't do well on medications, and since my husband works this entire weekend and I'll be here alone, I'm not sure I want to try a new med just yet! The last new med I tried at the beginning of March sent me into tach and straight to the hospital. I'll let you all know when I go back for more tests and what comes of them. Blessings to you all! Linda

Hi, Everyone, I'm back from Cleveland Clinic. I had the tilt table test. I didn't need the dye. I didn't even need the full 45 minutes! In six minutes of standing, my blood pressure dropped to 26/14, and I about hit the floor. Has anyone here ever had a blood pressure that low with a tilt? My doctor didn't seem concerned, but my nurse said she'd never seen anyone's blood pressure that low before. Believe me, I don't feel special holding this honor! My doctor put me on Florineff, but I'm afraid to take it. Anyone any ideas about it? I'm to go back in a couple of weeks for additional tests to see why I have POTS. I guess I'm kind of disappointed because I really don't know any more now than I did before I went. I knew I had POTS before I went, but I didn't know why, and I don't know now, either. I'm on all the same meds, except the Florineff, and natural stuff--salt, gatorade, etc.--that I was before, so that's no different. I guess I was expecting too much. I typed up all of my symptoms and diagnosis that I've had over the years from all of the many doctors I've seen, like Raynaud's because my hands and feet are always cold, but Dr. Fouad didn't connect any of them to POTS. The way she talked, POTS is simply high pulse when standing, low blood pressure and dizziness or passing out. She didn't connect ANY of my other symptoms, like gastric problems, coldness, tremers, etc., to the POTS. I feel like I know less now than I did before. I'm sorry to vent, everyone. I'm just really depressed. I think I put too much on this visit. Any replies would be most appreciated. Linda

Glad we could help to put your mind at ease, Frank. Someone on one of these threads said, just the other day, I think, that even when you've had POTS for awhile, and you're actually used to the symptoms, when you get a bad spell, you actually feel as if it's your first, and you become just as scared as you did the first time. With Christine just learning what's going on with her body, it's understandable that she would be terrified when new symptoms appear, or when existing symptoms get worse. It's great that you're seeing a specialist, to ease Christine's mind and to see if anything else is going on. Yes, please do let us know how she's doing. And, if you have any other questions, we're here. Blessings to you both, LindaJoy

Hi, Briarrose, I love the list you sent. Thank you! I am the editor of a monthly Senior magazine. Each month, I write an editorial, and I'm going to use that list that you sent in my next editorial. I'm also going to talk a little about dysautonomia and other "invisible" illnesses. Thanks for the info! Linda

Thank you, Briarrose, for the sites to access. I had seen the second one, but the first, mostly written by Dr. Grubb, I hadn't seen. Thank you. Linda

Hey, Briarrose, You said in your entry that there are 60 accepted symptoms of dysautonomia. I've only been here for a few weeks, and I've seen many symptoms mentioned (I've yet to be diagnosed--go to Cleveland Clinic this Wednesday for a tilt table test), but could you direct me to a Website that lists all 60 symptoms so I can compare mine to the accepted list? Thanks. LindaJoy

Hi, Frank and Christine, I too have problems getting breath at times. I feel like I have to actually think about breathing to make myself do it. Does Christine notice, during these times, that she has other symptoms of her POTS, such as sweating palms and feet, rapid heart rate, buzzing in her head, shaking? If she does, then she can be pretty sure that her lack of deep breaths is part of the POTS and that she doesn't have any lung diseases going on. Whenever I have the breathing problems, I do a self-analysis to see what else is going on with it. I usually find a few other POTS symptoms going on to assure myself that it's the POTS and it will soon pass. It's not pleasant--it's downright scary. I have a peak flow meter that I got from my asthma doctor (yes, I have asthma with POTS--a lovely combination). Whenever I feel short of breath, I take my peak flow test to see how my breathing is doing. When my numbers show normal, I'm assured that it's the POTS causing me some problems and it will be okay. I use the peak flow meter as more of a security blanket during these times, but it helps to ease my mind. Maybe Christine could look into getting one from your doctor, who can show her how to use it and when to be concerned. As far as the burning in her chest, it could be from muscles, as POTS does affect the muscles, or it could be from indigestion. Has she been diagnosed with any type of upper g.i. problems? Has she tried something like Tums, Maalox or Mylanta? When in doubt, try antacids for this and see if they don't help the burning--but be careful as antacids can decrease the effectiveness of some medications. If the burning is helped, then you know it's some kind of upper g.i. stuff that's going on, which many people with POTS have, as well. Hope this helps. POTS is not fun. It's a struggle, every day, to feel okay and to convince yourself that you're going to be okay. I feel for you, Christine, because I know exactly what you're going through. The other night, my first night alone since this latest POTS episode started over a month ago, I had the breathing problems, and I was terrified. I kept doing my peak flow meter, and it kept registering normal, so that was a little bit of comfort. Also, Christine, do you take anything like Xanax when you have major POTS symptoms? Xanax is for anxiety, but it really helps me when I go into POTS shaking and breathing problems, etc. It helps my muscles to relax, which helps my breathing, then helps other symptoms, as well. Please take care, continue to know that we're here to talk to, that you're not alone in this, and let us know how you're doing. With love, Linda

Was that painful, the electrode in the nerve? Linda

Leah, I feel like that--like every day is something different with this. I have the same symptoms every day, pretty much, but one day my tach might be the main problem, the next day it's my breathing, the next day my gastric problems, the next my bp, the next my heart rate. I feel like if I could just get the one main thing under control, I'd feel better, but then something else takes over as the main complaint. I about lost it yesterday. I was feeling horrible to begin with, then my computer lost an entire two weeks' worth of work, and in the middle of it, I was trying to make arrangements for someone to take my mom to the hospital to get her bp checked because hers went sky high. By last night, I was a mess, and today, I feel lousy. The heat in my face won't go away. My pulse rate is 47. I can't stop peeing. I think I'll go back to bed. Have a good weekend, everyone. God bless. Linda

Hi, Everyone. I have a couple of questions about gastroparesis. Last April, I had my gallbladder out because it was diseased. I thought that would take care of my stomach problems. A month later, the stomach pain came back. By October, I was having pain in my chest that sent me to the hospital. They did an endoscopy (?), put the scope down my throat, and it showed gastritis and GERD. A few years ago, my Cleveland Clinic endocrinologist told me that my stomach problems (pain, bloating, gas, etc.) were being caused from my food just sitting there--he gets so technical. That's all the further he went. Anyway, can gastroparesis cause gastritis? Or, are they the same thing? My gastrointerologist who did the scope said that I produce too much stomach acid, but he doesn't know why. I guess if the food in my stomach wasn't going anywhere any time soon, the acid would continue to accumulate. Sorry this is such a mixed bag. Hopefully, someone can decipher what I'm trying to ask. Could the gastritis be gastroparesis? Thanks. Linda

Hi, everyone. Wow, you all have the same symptoms that I do when I get these rushes. The headaches are horrible. My head feels like it's a balloon that's being over inflated and is ready to pop. And, the buzzing sound in my head is deafening. Does anyone else get that really loud buzzing sound in their head? I have a low buzzing all of the time, but during these storms, it gets really loud. And, Calypso, anyone who said that being an editor is a perfect job for someone with POTS has never been an editor with POTS. I manage a magazine for seniors and write for a few other niche magazines, and since I've been down with this latest episode, I've had to really rely on others to help me out because I can't drive, and it takes me three times as long to do any proofing because I can't sit at the computer for very long stretches. How you manage, on your feet, is beyond me. My hat goes off to you!! Linda

Hi, everyone. Here I am with more questions. When I first began having tach episodes ten years ago, I was put on a beta blocker--tenormin. I would have terrible, heart attack like symptoms for an hour after taking the medication. I thought I was gonna die each time I took the stuff. I was later switched to a calcium channel blocker (cardizem) and I do much better on it. Did anyone else ever have heart attack symptoms with beta blockers? Why are they so bad for people with POTS? Sorry if this issue has already been addressed. Linda

Hi, Julia. I've noticed that when my neck is especially tight, I'll feel as though I have a lump in my throat. I get systemic reactions to foods and cats, so I get this feeling quite often from allergies, too, but when I've not eaten anything I'm allergic to and have not been around cats, I really analyze to see how my neck is feeling. If it's tight, I know the "lump" is probably my throat skin being pulled tightly across my larynx, causing me to have a hard time swallowing. Does that make sense? This, sometimes, feels like I have a lump in my throat about the size of a quarter. I'm probably the only person in the world who has this explanation for throat lumps, and if I'm all wet, please just ignore this post! I do hope you find an answer soon so you'll begin to feel better. Linda

Welcome, mom4cem. I'm LindaJoy. I'm new here, too, and haven't been officially diagnosed yet, but I was told ten years ago that I have POTS (simply through manual blood pressure tests). I live in Ohio and have an appt. at the Cleveland Clinic the first week of April for a tilt table and, hopefully, some answers. I have a good many, in fact, I think all of the symptoms you have, either a few at a time or all at once. I can go for months feeling okay--never normal--then, boom, something happens to trigger the POTS and I have a heck of a time getting "over it." I think you're wise in wishing to see your old doctor who first diagnosed your dysautonomia. Or, maybe you can see a new specialist, one who knows a great deal about the condition, in your home state. I've found, in the ten+ years that I've had problems related to this condition, not too many docs, cardiologists included, know very much about it. You need to keep looking until you find one you're comfortable with, who is willing to listen to you and work with you on this. About taking the new medicine, I'm terrified to try new meds. I won't, if I can help it. But, if you have to try the medicine, if you feel it may do you some good, maybe it would help if you had someone there with you, another adult, who understands what you're going through and is willing to be there the first couple of days of the med until you know how you're going to react with it. As far as the kids go, most people with dysautonomia have it for always, so hiding it from them may not be a good idea. They'll eventually see for themselves that something is wrong with Mom, and they'll be scared because they won't understand that it's not fatal--I even have trouble most days thinking that it's not. I think explaining the condition would help them more to understand that Mom's shaking or tachycardia is scary, but it's not fatal. And, they can be a big help, then, too, on the days that you are feeling a bit off. Hope this helps a little. Oh, I'm a mother of two, and my poor kids have had to deal with me with this condition for years. My daughter, especially, gets scared when I have "attacks," but she knows about the condition now and is more at ease with it. Take care. Know you're in all of our thoughts as you go through this. LindaJOy

Hi, everyone. I've read a lot of references about mast cells. What is it if you have mast cell involvement? Is this part of POTS? How will you know you have this? Is it serious? Linda

Hi. This may not work for you, but it worked for me. When I was taken to the Cleveland Clinic years ago, by ambulance from Lima, I had been in tachycardia (150) for a couple of days. I hadn't slept at all and was exhausted but still in tach. When they admitted me, I asked my nurse if he could give me something to shut me down so I could rest. He gave me Benadry. Within minutes, I felt better and actually slept. Now, when I went to a local hospital about a year ago with heart problems (tach and pain), the doctor there said that Benadryl speeds the heart up. That wasn't the case for me. It actually settled me down. I don't know of anything else that actually helps to settle the rushes down except, at least for me, Benadryl and Xanax. I wish I knew of natural things. Some people say that certain teas can help, but I've never tried those. Hang in there, everyone. And, thanks for sharing your stories. As always, it feels so good to not be alone in this. Linda

Thank you, everyone, for sharing how this makes you feel. I was told, years ago by the heart doctor who told me that nothing was wrong with me except that I needed to go to church more, that I was turning my adrenaline on (as if I was doing it on purpose) and it wasn't shutting off. He yelled at me because of this, like I had some control over my body doing this. Anyway, that's how I get with these rushes. I will actually feel like adrenaline is rushing up the sides of my head. My face with go hot, I'll feel like my muscles are moving (when they're not, like a buzzy feeling in my muscles). I start to shake, some times violenty, my teeth will chatter, my heart, of course, will go tachy. Then, if I calm down on my own, I'll feel like someone let the air out of me. Now, though, I have Xanax, and I'll take one of these when I'm in the middle of a bad spell. I will get all heart poundy and shaky after eating, too. My endocrinologist told me that this was because I waited too long to eat and my sugar is now low, or something like that. I think it's the POTS--adrenaline kicking in. Again, thanks everyone. It's just so good to know that I'm not alone. Or crazy! Linda

Hi, Everyone. Just wondering, I've read some about hyperadrenergic and have seen many posts here that mention someone having this. Could someone who has it please tell me what this feel likes to have? I think I may have it, but won't know for awhile, until testing. I can feel adrenaline rushes and have many of the symptoms of it that Dr. Grubb describes in his published document. I'd just appreciate a personal take on how it feels. Thank you. LindaJoy

Thank you, Tearose. Thank you, Everyone. I did lower my medication today and I have felt better. I even went into the basement to do some laundry. (I went back up the stairs on my rear, scooching backwards, but...). I've checked my pressure throughout the day (I just love this little machine) and my pressure has actually been low today, even my diastolic, sometimes really low, so I upped my salt and drank three gatorades instead of two. Hope this finds all of you hanging in there. Happy Easter, everyone. LindaJoy

Thank you, Gena and Vemee for your responses. Gena, it does help to know that someone understands exactly what I'm going through. I'm not familiar with Klonopin. Is that like Xanax? Sometimes, I'll take a Xanax before bed, but I still have the episodes. I've found that the Xanax works better for me if I take it during or right after an episode. Vemee, I'm not familiar with perfusion. I'll look it up. Thanks. LInda

Hi, everyone, I posted a topic earlier that talked about my calcium channel blocker that I'm on. My blood pressure is doing some weird things (I just got a new blood pressure machine, so I've been able to watch it.). Yesterday, when standing, my systolic would be low, but my diastolic number would go higher than normal. I mean, my top and bottom numbers would be almost the same! This, just since my heart doctor, who doesn't believe in POTS, upped my cardizem since I had a bad tachy episode a few weeks ago. Also, I woke at 5:30 this morning, like I usually do, in anxiety. So, I took my blood pressure, and it was high--144/85. That's high for me. Then, after the anxiety passed, it went back to normal. When I was hospitalized at the beginning of March, they found that my blood pressure drops while sleeping (76/59). I know I jolt awake every night and go into one of these anxiety spells. Could it be that I'm going into fight or flight because my blood pressure goes too low, then I get anxiety and my blood pressure goes up to combat the low? I'm self-diagnosing again, but my doctor is no help in this. Can anyone explain my blood pressure fluctuations--big and continuous fluctuations--to me? Thank you. Linda Oh, I went back to my normal dose of heart medicine today.

Hi, Gena, Hi, Morgan, Thanks for replying. I'm taking myself down to 240 mg today of my Cardizem. My diastolic is still higher than normal today (been playing with my blood pressure machine again), and I can't help but think it's from my med being upped. I hope this works! Take care, Linda

Hi. I have a question about my calcium channel blocker, Cardizem CD. If anyone can help, that would be great. I had a pretty bad tachycardia spell the first week of March, which set me into all of my symptoms (am still waiting to see doc for tests to see exactly what I'm dealing with). I was on 240 mg of Cardizem at the time, and while in the hospital, my doctor upped it to 300 mg and has kept it there. Since that time, my husband bought me a home blood pressure kit (my Easter gift early--gee, most wives get candy! No, actually, I love it), and it shows that my diastolic number goes up when I stand up, and I feel pressure in my chest. My thinking is that my heart wants to race because of the POTS (I do know I have that), and the stronger Cardizem is holding it from doing so, and I'm thus feeling the stress and it's showing in my pressure. Does my logic sound right to anyone? I'm self-diagnosing right now because, one, my doctors here won't listen to me and never have, and two, I haven't seen my new doctor yet and won't until the first week of April for a tilt table test in Cleveland Clinic. Has anyone else had any experience with calcium channel blockers and could help me understand this? I think I'm going to put myself back on the 240 tomorrow (I felt a lot better on it before the POTS hit). I called my family doctor today about this, and she wants me to stay on the 300 (she doesn't believe in POTS and has said all along that I have anxiety). Help!!

Hi, Dayna, I'm new to the forum and haven't been officially diagnosed with dysautonomia yet, although I was diagnosed with POTS ten years ago, but what I've found is that I have symptoms every day, but most days are very manageable. I can drive, walk, stand for long periods, grocery shop, etc. I have spells when I can't function at all only after I've had the flu or high levels of stress, and those times have been rare, like every two years or so. (It does take me about three months to recover, though). I don't know your situation. If you've read the entries here, you'll notice that everyone seems to be different, even though most have the same condition. I can't help you with the autonomic neuropathy part; I don't know what that is. Sorry. I go in for a tilt table test the first week of April, and everyone at this forum has been soooo supportive of me. I'll tell you the same thing they've told me: it's scary to have this condition, but it'll be good to have the tests and know exactly what you're dealing with so you can learn your condition and learn what you can and cannot do. I raised two children and graduated college while ill with this. It took me two years longer than most people, and a lot of help from my mom, but I did it. You can too. It's hard. but hang in there. Keep us posted. LindaJoy

Hi, Merrill, You don't have these spells anymore? Is that because you're on medication that is working? I just started having these. I can't remember ever having them before in the ten + years I've had this condition. They're quite unpleasant, but when that Xanax kicks in, it's nice to actually feel your body calming down. That sounds weird, I know, but it's nice to actually feel a medication doing something for me when so many I've tried don't do a thing. Linda