LindaJoy

I'm going through a bout right now of this, and it started when I was put on a clonidine patch. While the patch is helping me so my body doesn't go crazy when I eat, like it has for years (and I'm still very limited it what I can eat), it has caused me major, major anxiety, of which I wake up to each and every morning now. Oh, joy. I hope yours resolves soon, Lynne, that you and your doctor can figure out what's causing yours and stop it. I know, it is absolutely miserable. But, like D, I am usually good to go after lunch. I think, too, I have Addison's and am on steroids, and after my second dose at noon, I'm much better than the mornings. Lindajoy

Hi, everyone, and thank you for your responses. Arizona girl, I talked with my pharmacist yesterday and she said it should be okay to do what I was thinking, leave half of the protective cover on my patch to get only 1/2 the medication, but monitor my bp. My doctor had said, weeks ago, she didn't want me to continue with the patch because of all of the side effects. They both said, the doc and pharmacist, that since I'm not taking it for blood pressure control, my bp will rise with w/drawal, but shouldn't go into the dangerous zone. I know not to listen to any medical people on issues like that anymore because we never know what us Potsies are going to do on anything until it's given to us, and even then, we're all different. Thanks, Hyperpots, for sharing your experience and for your advice. I'm glad clonidine helps you so much. It helps me, too, I just think it's too much for me. That's why I want to cut it down a bit. My skin is okay. It does get a bit read and dry in the patch areas, but honestly, I have mast cell disease and my skin can get to be a mess, and with the patch, it's not do bad. Lotusflower, thank you for sharing your husband's story. I'm sorry you both have to experience Dysautonomia but I'm very glad he's doing better. My husband has been doing a lot better the past three or four days. He still gets very tired and his guts aren't back to feeling well, but he's not having the terrible bp fluctuations and head pressure lately, so that's a really big improvement for him. He sees our pcp tomorrow. Take care, everyone. I had a bad night last night, so not feeling so great and am going to go sit in the tub. Lindajoy

Hi, Arizona Girl, I'm going to half the patch (can do this by keeping one side of the protective cover on while wearing) and see if I do any better with it. I'm having such severe anxiety with it, it's not funny. My skin is becoming a bit red and dry in the areas the patch has been, but they heal in those areas, so I'm not too concerned about my skin, just this awful, awful anxiety. It's gotten to the point, I hate going anywhere or having company over. I really like your thinking on what this med could be doing in people with hyper response. That's exactly how I feel on this, like I'm constantly putting out nor-epi and I'm wired all the time. I feel a lot better if I'm up moving. And, I have secondary Addison's, so I'm putting out adrenaline all the time; since my adrenals don't put out cortisol and I get stressed, they will fire away at adrenaline. I'm on overdrive constantly. I don't need a med adding to this. That makes total sense to me, what you said. Only thing is, I don't want to go totally off the patch since the clonidine is helping me to be able to eat without crazy reactions of my nervous system. I use the patch to try and balance my nervous systems. I think it worked at first, but now, it seems to be giving me symptoms. Like I said, I'm going to cut it in half, leaving on one of the protective strips, and see how that goes. Maybe I'm just getting too much. Thanks for the thoughts. Great thoughts. Lindajoy

I also have this, Lynne. I have no idea what causes it. I will go through periods when this doesn't happen, then periods, like now, when it's a lot worse. I'm sorry, I wish I had some advice, and I'm sorry you are experiencing this, too, because, yes, it is frightening and horrible to go through, but I'm glad you posted. I'll be interested in what others have to say and what helps them. Lindajoy

Thanks, everyone, again, for all your comments, sharing and support. He's doing better, bit by bit, each day. He tried to do a bit of yardwork yesterday, so he's tired and has a bit more symptoms this morning, but I think he's feeling a bit better than he was even last week. I don't know if I told you all this here at any point on either of my two posts about him, but he used to work in a chemical plant years ago, when safety wasn't a concern, and he used to breathe in a lot of chemicals, and get them on his skin. When I first got my POTS diagnosis and learned a bit about the condition, I thought John, even then, showed some symptoms of the it. Maybe all those chemical exposures could have done something to his autonomic nervous system? Then, having this severe virus was the final straw that pushed him over the edge? I'm starting to have a flare of my symptoms. It's this clonidine patch, I think. I've either gotten used to the low dosage and need more, or the side effects are getting worse. I haven't been able to sleep the past three nights, the anxiety has gotten so bad. I keep praying my health will hold out. Thanks, again, everyone, for taking your time to help me with my situation, and my husband. You're such a great group of people. There are some days I'm actually glad that I have POTS so I was able to meet all of you here. Then, I think to myself, "Are you crazy?" :) Lindajoy

Thank you. You take care, as well. Lindajoy

Yes, he gets that sick just from the poor man's tilt! Sad, isn't it. I don't envy his actual tilt. He's scheduled to see the doctor at CCF at 8 am, then the tilt at 11:00. The secretary said the time in-between was left open for any additional testing the doctor may want to do in the meantime. He's actually having a better day today. He's trying to trim some shrubs. I just looked out of the window and noticed he's taking a break on the porch, sweating pretty badly. I'd better go check on him. Thanks, Arizonagirl. Lindajoy

Thank you, Arizonagirl and Kim. I can not remember if I had pain in my legs with my tilt tables or not, so I was no help to my husband on this one. He has had it so badly with both "tilts." Arizonagirl, he did his barefoot. I'll have him wear shoes the next time, although I don't think he'll let me test him ever again. He gets so sick for hours afterwards. I took pictures of his red legs, to show the doctor when we go to Cleveland. Again, thanks you two. Lindajoy

Thank you, everyone. Yogini, I thought that, too, but we've moved three times since I developed Dysautonomia, and I had POTS long ago, in the early 90's, whereas my husband just started with his after this really severe virus he got. He also has hemochromotos, with co illness, arthritis. Dana, I'm so sorry for your financial situation. I often wonder how much longer my husband will have his job, he misses so much work. I keep hoping I won't get down, too, while he's down. He did have a good day yesterday, though. By evening, he wasn't feeling too good again, but he said he felt better yesterday than he has in weeks, so that was hopeful. In the meantime, he continues to lose weight. Thank you, Arizonagirl, for all your information. Dr. Levine. I've heard that name. I thought of that too, about his seeing what I've been going through all these years and developing empathy for the situation. He has, I think. At least, he's made comments about finally understanding what I've been going through, being so sick and not really knowing what's wrong. He's worried that soon the "It's all in your head" comments will start being said. He already got a card from his dad's girlfriend, not a traditional get well card, but a "Life can be disorganized, which causes stress, so hang in there," card. John said, "What, is she saying this is stress, that it's all in my head?" He was so upset. So was I. I know what that feels like. Anyway, I thought the empathy lesson would all be on his side, but I have to admit, I've learned what it's like to be on the care giver side too, and it's hard, as well. I feel responsible to get him to doctor appointments, to know what to do with each of his symptom, etc. It's hard from this end, too. Thank you, Kim, for your support, yet again, always. Yes, I hope we're both not down at the same time, too. I worry so much about that lately, since I'm "responsible" for taking care of him right now. I just keep praying, every day, for God to keep me strong until John is better, then I can fall apart again. Take care, everyone. I'll let you know more as I know it. Lindajoy

Wow, I don't think it's contagious, RichgotPots, but I'm wondering if we both can have the same thing, or if I'm reading something into it that isn't there for him, because I have it. (I'm sorry about your girlfriend also having this.) Then along comes Dana, and she and her husband both have it. I'm so sorry for the two of you. I hope you both aren't down at the same time! Literally, at times... I suppose we both can have it, like you all with your friend and husband. I just don't want to put my stuff on him, yet, I think when we have something, that makes it easier for us to spot in others?? Thanks, all. Lindajoy

Hi, again, everyone. Hubby wanted me to ask if any of you get extreme calf pain after a tilt table test? Both times, after his poor man's tilt table tests, he's experienced what he said is excrutiating calf pain. Anyone else? If so, do you know what causes this pain? He also got heaviness in his fingers and those started to tingle. Is this from blood pooling, do you think? That would be my guess to him, but I want your input, as well. Thanks. Lindajoy

Thanks, you two. I hope so, too! Lindajoy

Hi, everyone. My husband got sick about six weeks ago, ended up in the hospital, went to Cleveland Clinic for testing, and now, he's still got symptoms but the docs can find nothing to explain them. Guess what his symptoms are... --bp fluctuations (he'll get high spikes, then go low) --alternating diarrhea / constipation --weight loss (32 pounds in less than three weeks) --loss of appetite --exhaustion after little physical exertion (he just lays around mostly, and that's not him) --tachycardia (usually when up) --headaches --overall feeling of not being well He sounds so much like me, it isn't funny, so I've had him do two poor man tilt tables at home, and he's failed both miserably. His blood pressure goes up a bit while he's perched stiffly up against the wall for ten minutes, but more notably, his legs and feet turn red with blood pooling, his hands tingle, he gets nauseous and feels awful, he gets a headache and may start to shake, and his heart rate goes up maybe as much as 30 bpm. Once he sits down (today, he didn't even make it ten minutes, more like six), he feels awful for hours. I thought to myself, "Okay, the docs aren't finding anything, so what about POTS?" The docs think John had a severe virus that was going around that started all of this, and his body may still be dealing with the virus, but what if he's developed POTS while fighting the virus? He was pretty dehydrated when he entered the hospital. He felt a lot better on an IV. My question to all of you: Have any of you ever known a husband and wife to both develop POTS from a virus, possibly years apart? My husband used to work in a chemical plant, a long time ago, before safety was a priority, and I've thought often, since my diagnosis, that he has some POTS symptoms of his own, possibly from working around chemicals for so long. Now, I think maybe this virus pushed him over the edge. What are the chances we both could have POTS? I know a couple who both have primary Addison's, so I guess it's possible. Same story here with him as with me and many of us here: Docs aren't finding anything, so they are saying he's fine, good to go; or they're passing the buck to other docs; or they're just plain not even calling back. Poor guy, he's getting a personal taste of what I've gone through all these years. I'm just waiting on the "anxiety" diagnosis that's sure to come. I've got him scheduled to do autonomic testing at Cleveland Clinic at the end of August. Wish I could get him in sooner, but the secretary said they are so busy anymore, people coming from all over. Just thought this was interesting--I'm sure that's not the word I want to use--more like disturbing, and wanted to share. Lindajoy

Blood pooling in my legs was one of my first symptoms. I would turn purple, and I mean purple! I pool standing or sitting, doesn't matter. I pool in my arms, as well. I'm a mess. Lindajoy

Kayla, I am so glad you are home. I've been thinking about you a lot and praying for good things for you. I was on birth control for about six years. The pill gave me terrible migraines, and it was while I was on it the first and only time, that I had a bout of fibromyalgia that was severe. Coincidence? I don't know. I know I felt a lot better once I was off it. I know nothing about your port. I'm sorry. You take care and I hope you get into that special hospital soon. In the meantime, know we're all here if there's any other questions we can help you with. Hugs, Lindajoy

Jen, I'm grinning ear to ear with you. Yes, what a gift! When I first got sick, I used to have good days and bad days. I got to the point I didn't appreciate the good days because I knew they wouldn't last, and I wanted them to last so much, that I mourned all through them, not experiencing them at all, missing out on the good. I've learned that I'm never going to be "normal," so I have begun to appreciate the good moments. I'm so glad you have had a good day, and I wish you many, many more. Thank you so much for sharing with all of us so we could celebrate with you. Hugs, Lindajoy

As I've gotten worse in my diseases (I have Addison's, Dysautonomia and possible mast cell, plus others--see below), I have a terrible reaction to the sun, especially on hot and humid days, and in Ohio, we have quite a few of those in the summer. I have what you describe to start--a feeling of electricity through my body. Then, I feel very anxious. I start to sweat and feel horrible. I have to go inside and cool down. I just started doing this last summer, and that was the first time I got sun poisoning, too. Had no idea what it was. I've been a "sun worshipper" for years, usually sporting a good tan, but last year, my body changed and I cannot tolerate the sun at all. I don't know what is causing mine, either. My mom is the same way. I have been tested for porphyria a number of times, so it's not that. I have no idea, but I'm sorry you are experiencing it, as well. If you or anyone else finds out, please post here. I would sure like to know what this could possibly be, as well. Lindajoy

There is a form of mitochondrial disorder whereby seizures are part of the disorder. If you'd like, I could get that information to you. I don't want to inundate you with "Hey, it could be this or that" 's. Let me know, though, and I'll get it to you. Lindajoy

Hi, Heather. No idea what's going on with your sister, but just wanted to say I'm so very sorry for both of you to have to deal with this. Please keep us posted here and know you're on my heart, as is your sister. My son had seizures as a baby. I know how scary they can be. Hang in there. Lindajoy

Good luck, Picaresque. Glad to meet you, sorry you have to be here, but glad you found support and information, just the same. Lindajoy

Here's another one. Can't seem to laugh or yell without getting light headed, either. I'm just not a quiet or still person by nature, so this change is hard to take. Lindajoy

I live in Lima, one hour south of Toledo, one hour north of Dayton. Marsha, who's your doctor at Cleveland Clinic? Lindajoy

POTS: I fear the same things --losing control in public. --showing up at the ER and dying at the hands of an ignorant doctor. --mornings and how I'm going to feel. --not living a normal life span because of this. --that my kids and their kids will suffer as I have --being alone and not getting help in time if I need it Things I fear in real life: --ticks --rejection --being ignored Lindajoy

Hi, again, all you Ohioians. My husband had an interesting theory on this. He said that under northern Ohio there is a huge aquifer, and he wonders if something couldn't be leaking into that to get into a lot of Ohio's water supply, such as from a refinery doing deep-well injection to get rid of their waste (like the refinery in Lima, and possibly the one in Toledo). Just wanted to share that. Hi, Mark. Yes, I'd like to know who you see as I don't have a Dysautonomia doctor at this time. Heck, I'm to the point, I don't even know what kind of Dysautonomia I have anymore. It doesn't look like POTS, so we don't know what it is, only that I just don't function right. Lindajoy

You know what I've found is, I like books that just give me story, not a lot of, for lack of a better word, trash, so I go to our Christian book store in town. I still get murder mystery, family drama, romance, etc., without the graphic or trashy detail. Right now, I'm reading, Intervention, by Terri Blackstock. It's about an 18 year old drug addict whose mother, in desperation, conducts an intervention, after which the girl, intending to go to de-tox, gets kidnapped and her interventionist killed. It's been very good so far. Like this topic. Oh, and All About Peace, I like Oh, the Places You'll Go too. I got it for a graduation gift from a college friend of mine. I love Dr. Seuss, all except The Cat in the Hat. It bothers me how the cat is, but I love the rhyming, the non-sense words. When I did a reading program at the prison I worked at, for inmates to read to their children, most times, they chose Dr. Seuss books. It was great. Lindajoy