janiedelite

Unfortunately our disease is not the only one who leaves patients wanting for more knowledgeable doctors. My mom was misdiagnosed for a decade as being hormonal/menopausal, depressed, anxious, etc. when she actually had carcinoid syndrome! There is one doctor in our town who did a residency with one of the few carcinoid researchers in our country, but he only sees carcinoid patients one day a week and is never available for needs that arise acutely (like IV fluids/electrolytes, etc). We did a ton of research and decided to travel yearly to see a top carcinoid doctor in New Orleans, and found a local oncologist who is willing to implement the research doc's orders and who has a nursing staff who can help mom with acute needs. Still, this local doc often implements the research doc's orders reluctantly, is behind on the latest research, and I always go with my mom because I seem to understand her disease better than he does at times. We often wonder out loud what do people do who can't speak up for themselves (like the elderly or homebound)? How do people get the care they need without family or friends to advocate for them when they're too sick to do it themselves? To avoid being totally frustrated, we try to really enjoy the time we have to spend with each other (even at dr's appointments ). She's had carcinoid syndrome with metastases to her liver for over 20 years how. Talk about perseverance!

Thank you, Firewatcher. What great stories! You're right... God's timing is better than ours.

Thanks Suzy. It's good to have you back here again, although I wish you were feeling better. Janie

Yummm... chocolate! Thank you for your encouragement about TTC. I've put off trying new POTS meds because we're TTC. We're having to decide if it's worth continuing to try or to stop and maybe get my POTS under better control. I hope things work out for you.

Oh Suzy, sorry that you're feeling down again. Sometimes it feels like the unpredictable ups and downs are almost harder than feeling sick all the time. At least you know now that with proper rest, you can have some better times. I just posted about how sick talking makes us feel. It just furthers our feelings of isolation. I think it's why I'm so active on this site because I can lie down and type without getting sick! You're not alone. I hope you're feeling better soon, Janie

BellaMia, You're welcome! I wish I knew about the jerks and burning skin. I've been told that I have a hyperadrenergic response to my POTS. Days when I'm more POTSy, the adrenaline kicks in (tremors, flushing, high BP) and I notice more of the burning skin and disrupted sleep. I've also been told I have small fiber neuropathy which the doc said is why my skin burns and is so sensitive. My skin today feels like it's been rubbed over with sandpaper all over. I can't wear my hair down anymore because my neck is so sensitive. I really think it's all POTS-related because I'm forcing fluids and I'll feel a bit better after I've chugged another glass. Then I pee it all out and feel like before. Do you have tremors? Do your tremors get worse with stress? Do your tremors subside while you sleep? When my POTS is worse, my adrenaline flares which causes more tremors. I think I read somewhere that if your tremors subside at night/while you sleep, you probably don't have Parkinson's but don't quote me. My mom and grandma and great grandma all got tremors in their 50's (essential benign tremors). I'm 35, but since my body is falling apart at a fast rate I guess I got the tremors earlier in life . When in doubt, check it out! (with the doctor) . Take care!

I'm sorry for the struggles you're having. I can relate. We put off trying to conceive til we could figure out what was wrong with me. Then I went to Mayo and got the POTS diagnosis and official "thumbs up" from a doctor regarding pregnancy. We've been trying to conceive for 8 months now without success. We went to special needs adoption training, where you adopt a foster child, and were told that I had too much fatigue to be able to care for a special needs child (which is probably true ). We looked into private adoption, but you have to disclose all your disabilities to the prospective mothers. There are so many "healthy" couples waiting to adopt so we gave up on that. So many foreign countries require that neither parent be disabled, or that both parents travel and stay in the country for a week or more. I always pictured myself as a mom, and can understand the heartache and frustration that results from not having a child. In my case, my POTS symptoms vary greatly from day-to-day and I wonder if I could get through a pregnancy and care for a busy little one. We have an appointment with a fertility doctor in a couple weeks, but we're mostly going to see what the problem might be. I don't want to go on any hormones for fear of screwing up my body more. If your symptoms are well-controlled maybe you could look into private adoption? These illnesses take so much from us. It's okay to be mad, sad, etc. Keep us posted.

Yes!!! I always wake with a headache. It's one of the reasons I was recently sent for a sleep study because sleep apnea is often a cause of morning headaches. (I don't have sleep apnea. I didn't even snore.) What I've been doing lately is taking advil as it helps somewhat. I also drink 20 oz of G2 with 1/2 a teaspoon of salt added before I get out of bed. That seems to help a bit too. And yes, I have constant pain which varies in intensity from my upper back to the back of my head. I've had that for 10+ years, but it's worsened with POTS. Some days I do have to take 1/2 a vicodin with the advil, but that's usually if I'm still in too much pain at bedtime so that I can sleep through the pain. I do think it's dysautonomia-related because I notice my headache and coathanger pain are better when I wear leg and abdominal compression.

I had my first POTS-related tachy episode 10/06 and my symptoms have slowly worsened since then. One of my most disabling problems is that talking brings on these symptoms that seem to be a byproduct of too much adrenaline: - Flushing from the chest up. Even my eyes get pink, blood shot and feel gritty and sore. My skin gets so pinkish red and feels hot to the touch. - Within a couple hours after a flush, I get red, burning, itchy bumps on my neck, face, ears, etc. that I think are a heat rash. - This flushing occurs during any conversation but the more I talk, the worse it gets. - Laying down while talking only helps slightly. - BP rises substantially while talking, even when lying down (this was demonstrated during my TTT at Mayo), even when not talking about a stressful topic. - Other symptoms that accompany a flush are chest pain, head ache, scattered thoughts, burning mouth, fatigue, and a feeling of doom. I had a really bad flushing episode 2 days ago at the dr's and it feels like the flush and its accompanying symptoms have never gone fully away. My face has a consistently ruddy appearance. I know my body produces too much norepinephrine, which in itself can create feelings of anxiety and doom. It's just that I've watched my mom deteriorate from carcinoid syndrome for 20 years and so many of my symptoms mimic hers. (I've been fully tested and my symptoms aren't from carcinoid as of yet.) Wierd, though, huh? Benadryl helps with the burning pain in my face and mouth a bit, and if I take a 1/2 of a vicodin I don't notice the chest pain and headache so much. I've also been tested for pheochromocytoma and don't have that. It just takes days or weeks to recover, and I'm never quite sure when a flush will be severe like this. Then I have an episode like this and feel even sicker for days or weeks, during which time I'm more susceptable to recurrences. Who can relate??? What can I do besides resorting to sign language in order to avoid talking and triggering these episodes??? No doctor knows what to do with me... Should I consider going back to Mayo where I've already been? (They said I might have MCAD even though urine methylhistamine was normal. Standing norepi was high. I have small fiber neuropathy. They want me to try mestinon but we've been trying to conceive; but no luck after 8 months, so maybe I should just go on the mestinon.) Would mestinon help with flushing? Heat seems to trigger these episodes, or at least make them worse, by the way.

Bella Mia, Thank you for sharing that precious story about your little granddaughter. I think you've shared about her before. She definitely sounds like she's good medicine. That's what I tell my hubby, that he's my best medicine. I just read the profile you wrote about yourself. You certainly have an inspirational way of writing. Thank you for sharing about your experiences. I just woke up, having had an adrenaline-filled sleep full of body jerks and burning skin. I was feeling rather pessimistic about things this morning til I read your post and profile. Thank you!

Thanks Summer! Man, my skin is hurting so much today. I haven't had a bad flush like I did yesterday for such a long time. My skin feels like it's been grated by a cheese grater all over. I think another name for this is allodynia/hyperesthesia. I forget how sensitive my body is to stress until something like this happens. Work is just NOT an option for me right now. I've seen other co-workers struggle with chronic illness and heard the comments the other nurses make and the lack of understanding they can exhibit. Good for you for pushing through and doing what you're capable of! Don't try to do more than you're able. I'd be afraid to have the duty of verifying meds or orders because my ability to think is so impaired. Stick your ground for safety's sake!

So last night I had these small red bumps pop up all over my neck, behind my ears and on my chest and cheeks. They burn and itch, but not horribly. Benadryl didn't take them away. I showed them to my mom this morning and she said it was a heat rash. When I flush, like I did at the Dr's yesterday, my skin gets so red and hot so I guess it makes sense I'd get a heat rash. I don't have it anywhere else on my body and my temp at the Dr's was only 96.8 F. My body can be cold while my skin is so hot. It feels horrible and I feel like I have an adrenaline hangover today. Anybody else get a rash like this from flushing?

Yes! It's easy for some people to look at our symptoms and say well, why can't they just push through that... but when you live with this day in and day out, there's not much to push towards except more fatigue. I just want to thank everyone on here for their kind words and support. I'm tearing up as I realize that there is a whole world of people "out there" who understand how I feel living with this isolating and complicated disease. You guys are the best!

So true! As you read my post today about my Dr's visit today, you know that I can relate to having to explain all the nuances of how our disease affects different areas of our lives. I had one of the many "duds" I saw during my diagnosis journey tell me and my hubby that I had anxiety and needed therapy. I told him that I was already in therapy, and the therapist believed I was coping pretty well with my REAL physical problems! Then he read in my chart that I take 1/2 a vicodin a few nights a week to help me sleep through my neuropathy pain and was concerned I was addicted so I asked him what else I can take for my nerve pain and he wanted me to meditate and do deep breathing exercises... at that time, hubby and I looked at each other and just started nodding to everything he said. We left and just rolled our eyes... another one bites the dust! I hope you find a PCP who is willing to learn about your disease and not just try to fit you into a category that massages their ego. Keep searching!

That's so GREAT! Take care of yourself and let us know how you're doing! Have you had much nausea in your first trimester?

Thanks, guys. Tearose, it is so true that it's the ones who see us every day who understand the toll that a normal activity takes on us. I really think that my doctor wants to understand, I just didn't think we'd be talking about disability since I was there for a gynecology exam. I've actually got a document saved in my computer called "a day in my life" which describes the planning, energy and time it takes for each activity. My next appointment I'll bring it with me. This doctor has always believed me and provided referrals to at least 8 specialists when I first got sick. I think she really is just trying to help me and understand where I'm coming from. Hi FutureHope. Yes, it's tiring, and most of all I feel so helpless when I get overwhelmed by answering a questing like "what kind of work could you do." I used to be so quick and had answers for everything. If I could just explain how taxing it is to explain these things... My mom has been disabled for the past several years because of her carcinoid syndrome. I go with her to all her appointments because she gets overwhelmed with questions like these too. It's so helpful to have someone who can put into words for you the struggles you have every day. I think the doctors believe you more when you have someone else with you to validate your symptoms. Thanks you guys, hubby came home and put in our portable A/C unit so I'm resting comfortably.

I've been trying to get into my gyno for 5 months to get my yearly female exam, but she's been ill herself and I've had several cancellations. So I figured I'd just get it done by my PCP, who also facilitates getting treatment for my POTS. I always bring someone with me to Dr's appointments but didn't today because I was feeling well enough to drive myself and I was having my pap and all that stuff done. My PCP is always patient and listens to me and facilitated all my disability paperwork too. So she asks if I could go back to work as a triage nurse, as I would be working sitting down and using the phone (I think she meant like a call center nurse). For those of you who lost your ability to work because of dysautonomia, I'm sure you can understand how painful it is to have to justify not being able to work. I just don't think she understood how tiring small tasks, like talking, can be with this disease. So I told her how talking makes me flush, BP rises, and I get so tired. I told her that I've thought about working many times, but I would have to have a job with flexible hours, short shifts, and I need to call in sick often. Then, I explained that I physically couldn't work full-time anyway, and that small activities make me tired for several days afterward. I told her that I probably could work a few hours at a time, if I was feeling well enough, but I couldn't do anything else because I'd be resting to recover and prepare for my next shift. I feel like this was a very inadequate explanation. I mean, could I have been more descriptive than just saying activity made me "tired?" How about nauseated, brain fogged, painful, ...? I wish I could have explained myself better and when I see her again in another 6 months, I'll have someone else with me who can help me answer these questions. When she initially asked how I was doing I told her I was doing well, because compared to my worst days I was pretty good! Maybe I should act more sick. On my way out of the exam room, I checked myself in the mirror and from my chest up was bright pink. My skin burns so much. Even my eyelids and my ears are flushed. Now I'm wiped out. Maybe I should have let her know how long it takes me to recover from going to the doctor?!

Zyrtec improves my symptoms during times of the year when there is pollen around that I'd normally react to. I've always had hayfever, but since POTS set in it seems that I have an exaggerated histamine response to anything I was previously allergic to. For me, that means I pool a lot more, get hives, itch, so tired, tachy, very drippy nose, itchy eyes, etc. Some days I have to take zyrtec twice a day. My urine methylhistamine at Mayo was normal, but they said they couldn't completely rule out MCAD. 1. Yes my BP rises on standing. 2. On days when my hayfever is active, zyrtec can improve my symptoms 75%. On other days, it doesn't do much. 3. I pool everywhere. I benefit from leg and abdominal compression. My arms also pool. 4. Yes, I've gotten I think 3 true migraines since POTS. Prior to that, I never had migraines. Along with the migraines I have abdominal pain, diarrhea, nausea and vomitting, whole body tremors.

Wow, that's so wierd because my knuckles are always the first to get the chilblains (even the joints/knuckles on my toes). And yes, the joint gets red and swollen. My chilblains start like little hives but when they're really flared they grow to dime size. Like Broken Shell, I have livedo reticularis mostly in my extremities which worsens if they're lowered, but also in my abdomen if I'm flushing. I used to post frequently in a Yahoo erythromelalgia (EM) support group and many of those patients also have Raynauds. I really think many of these rare conditions overlap (POTS, erythromelalgia, raynauds, etc.). Erythromelalgia causes red, painful extremities, usually the feet but can involve hands and face too. EM is usually caused by small fiber neuropathy, but can be autoimmune or genetic. If I get a bit warm or stressed or do too much, my feet and hands get red and hot and my burning increases (which is why I was diagnosed with EM). But if I get stress or do too much and I'm a little cold, then the pernio hits in my feet and hands.

Hi Austin, I can feel your anxiety through your post. I started having orthostatic tachycardia in 2006 and my symptoms really got worse last year. My BP rises on standing or stays somewhat the same. I'm easily too hot or too cold also. I have tremors, which get worse with any kind of stress. I have exaggerated anxiety responses too. I also have dizziness and feel like I'm moving when I'm not. Nausea, sensitivity to light, abdominal pain, skin pain, a long list.... I went to Mayo earlier this year and was fully tested. They found I have dysautonomia, small fiber neuropathy, and POTS. The best part about going to Mayo was I finally got to talk with a doctor who sees patients like us all the time. He was so encouraging! POTS is not normally a degenerative, progressive condition. Most people do have symptoms that get worse and better at times though. Some people call these worse times "flares" or "episodes." Sometimes these flares last for a few hours, or a few days, or months. I was practically bedbound from summer 2008 to 1/09 because of the fatigue, chest pain, nausea, etc. I have had flares over the past few months, but they last for a day or a few weeks since I've implemented the Mayo doc's suggestions. In between, I rest a lot but can drive, clean, cook, go for walks, visit people... I can't tolerate Florinef, but just because your BP is stable doesn't mean you wouldn't benefit. Are you seeing someone who really know a lot about dysautonomia? There is a directory on the Dinet homepage of docs in various states who specialize in treating dysautonomia. My neurologist and PCP couldn't find any diagnostic facilities or docs for dysautonomia in the Pacific Northwest, where I live, so we traveled to Mayo. It was the best thing we've done. There are other places/docs that might suit you better it's just what was closest for us. Suggestions Mayo made that have helped me: abdominal and leg compression, high salt diet, high fluid intake, mild exercise regularly (I walk), stay cool in warm months, don't get dehydrated, and have hope! Some people with POTS/dysautonomia even recover fully! If not, most of us learn to manage our symptoms and adjust our expectations and still enjoy our lives for the most part. I can't work anymore, though, and receive long-term disability payments. Do you have parents/siblings/friends who can help you? You must feel so overwhelmed, especially when doctors don't really know what to do for you. Keep looking for answers. There are many medications and treatments out there that you haven't tried, you just have to get to the right doctor who will help you find what works for you. Take care, Janie

My appearance hasn't changed dramatically either, but those who know me know when I'm not feeling well because I'm very quiet. My arms and legs change colors, and I feel a little conspicuous wearing abdominal and leg compression. I've grown my hair out so that I can just put it in a braid each day as standing in front of the mirror to fix it is too difficult. I carry my seat cane with me. My skin burns, especially on my hands, feet and face, so putting on makeup is irritating and I wear birkenstocks year-round as closed shoes make my feet hot and they burn more. I've lost much of my muscle mass and I weigh the same as I did pre-POTS, but I'm a couple sizes larger because I'm not as compact anymore. I used to really enjoy wearing trendy clothes, have stylish hair, wear full makeup daily, and be pretty thin. Those things made me really happy. Now I'm happy if I can do some housework, go for a walk, and make dinner!

Thank you for sharing your experience, Firewatcher. It reminded me of last summer when my POTS really flared and I began to have burning pain all over my body. I was in so much pain and spent most of my time on the internet, trying to figure this out, too. I went to doctor after doctor and they had no answers for me. My husband felt horrible watching me suffer and was helpless to fix me. He made a comment one day while I was searching on the internet that maybe I needed to realize it was all "in my head." After he said this, I cried and felt so alone! I realized that I needed a bigger support system than what I had, and I needed to adjust my expectations about our relationship and not solely talk about my illness with him. We had good health coverage for counselling, so I started seeing a therapist who I could talk with about all my symptoms and feelings and who supported and encouraged me and helped me cope. In the meantime, hubby realized that he'd messed up big time. He explained to me how helpless he felt and that he would do anything to help me feel better. He honestly thought that if I could mentally tell myself that I was fine that it might help! I explained to him that if I at least knew why my body was going through this, I probably could mentally deal better with the pain and fatigue. He explained that he felt he was losing his wife, not to the disease but to the computer. He understood my need to search for an answer, though. So I made it a point, after that, to spend some time each day with just him. I continued with the therapist, too. We both talked with the therapist by the end of the summer about coping with this illness. It was a really good thing. It helped us to understand ways we communicated ineffectively, underlying fears related to our pasts, and ways we could effectively support each other. We've only been married since 3/07 and since then I've had 2 hip surgeries, 100 PT appointments, chronic frostbite, disability, and POTS. We laugh about the "in sickness and in health" but know that if we can make it through the ups and downs of POTS, with God's help, we'll be in pretty good shape! Mae, I know how hurt and alone you can feel. I hope I gave you a little hope by sharing my story, at least so you can find the support that YOU need.

Yes! I get the bumps you described. It was one of those bumps that was biopsied as pernio, which I think is the same as chilblains. Mine never become open sores, either, but I can get so many on my feet that my toes are too swollen to wear shoes. The tips of my toes are often purple at this time also. And the itching is unbearable! Benadryl helps ease it up and I can sleep through it because the worst itching is at night for me.

Me too! Lately it has been interfering with my use of a computer mouse because my wrist trembles so much that the cursor often flies around the screen. I often knock things over with my arms too. Hubby and I just laugh about it because what else can we do?!

I echo what Firewatcher said. Our weather in this area is going to be a positive change for you. Maybe you can PM other Dinets members about any good docs in that area. Yes, there aren't great specialists nearby, but my PCP will do whatever needs to be done for me. I'll fly back to Mayo if I have to, but our goal is to manage me as well as possible here. My feet hurt and burn from my neuropathy, so I wear Birkenstocks year round, and I fit right in!