janiedelite

I am picking up a biopsy slide Monday from my dermatologist. They usually destroy the slides after a year. Mine was done in March '08. What you described happening to your feet is exactly what happens to mine, too. It's comforting to see someone else have this problem without any underlying illness, except dysautonomia.

So frustrating! It's too bad that your doc didn't at least have his nurse call you or something about his thyroid concerns. I hope you can get the treatment you need, whether it's the diabetes insipidus or thyroid issue.

Hi Jump, I had a PPG (which just checks for blood clots). The vascular doc I saw said that it's just a standard thing he orders whenever Raynauds is suspected. He did say I could go to OHSU (the local research hospital) and have the cold water test done that you described, but instead he just diagnosed me based on my symptoms. He gave me a script for procardia which my EP cardio said not to take because it would make my pooling and tachycardia worse. This was last summer, and I had gone to several docs and showed them my purple feet. They weren't really cold at the time, but the nails turned purple like you described. My capillary refill was fine. I think they didn't have any other name for what was wrong with me so they called it Raynauds. You may indeed have Raynauds, but our purple feet seem to be a more constant gradual lack of blood flow. Raynauds patients get quick spasms of their blood vessels in cold or stress which result in acute, episodic purple, blue or white extremities. Is that right??? But in cold temps, my feet are usually very white with purple tips or have a bluish tinge and they are very cold for hours on end unless I keep on my wool slippers or keep them under a heating pad. The capillary refill is very slow and sometimes I can't feel pulses in my feet. In the winter I develop the chilblains and chronic pernio symptoms, although I did get pernio once from sitting in a cold doctor's office for an hour in the summer. When my feet or hands get cold, my toes ache so badly! But if I am too warm (like in summertime or cooking over a hot stove), then my hands and feet (and sometimes my whole body) turn flaming red and burn horribly. In warm temps, they burn nonstop and the only thing that helps is a cool rag on my skin in front of a fan. It's like my blood vessels are over-reacting to any cold or heat. Sorry if this is too much info about my feet, but it's been one of my most visible and annoying symptoms

I've been tested for everything that could have caused my pernio (autoimmune, blood cancer, vasculitis - I did have a trace positive cryoglobulin level but I have no hepatitis or any other problems with vasculitis). So it sounds like Dr. Stewart's low-flow POTS patients continually have peripheral vasoconstriction. "Local vascular responses affecting blood flow in postural tachycardia syndrome Julian M. Stewart,1,2 Marvin S. Medow,1,2 and Leslie D. Montgomery Department of 1Pediatrics and 2Physiology, New York Medical College, Valhalla, New York 10595; and LDM Associates, San Jose, California 95126 Submitted 6 May 2003 ; accepted in final form 7 August 2003 Postural tachycardia syndrome (POTS) is defined by orthostatic intolerance associated with abnormal upright tachycardia. Some patients have defective peripheral vasoconstriction and increased calf blood flow. Others have increased peripheral arterial resistance and decreased blood flow. In 14 POTS patients (13?19 yr) evenly subdivided among low-flow POTS (LFP) and high-flow POTS (HFP) we tested the hypothesis that myogenic, venoarteriolar, and reactive hyperemic responses are abnormal. We used venous occlusion plethysmography to measure calf venous pressure and blood flow in the supine position and when the calf was lowered by 40 cm to evoke myogenic and venoarteriolar responses and during venous hypertension by 40-mmHg occlusion to evoke the venoarteriolar response. We measured calf reactive hyperemia with plethysmography and cutaneous laser-Doppler flowmetry. Baseline blood flow in LFP was reduced compared with HFP and control subjects (0.8 ? 0.2 vs. 4.4 ? 0.5 and 2.7 ? 0.4 ml ? min?1 ? 100 ml?1) but increased during leg lowering (1.2 ? 0.5 ml ? min?1 ? 100 ml?1) while decreasing in the others. Baseline peripheral arterial resistance was increased in LFP and decreased in HFP compared with control subjects (39 ? 13 vs. 15 ? 3 and 22 ? 5 mmHg ? ml?1 ? 100 ml ? min) but decreased to 29 ? 13 mmHg ? ml?1 ? 100 ml ? min in LFP during venous hypertension. Resistance increased in the other groups. Maximum calf hyperemic flow and cutaneous flow were similar in all subjects. The duration of hyperemic blood flow was curtailed in LFP compared with either control or HFP subjects (plethysmographic time constant = 20 ? 2 vs. 29 ? 4 and 28 ? 4 s; cutaneous time constant = 60 ? 25 vs. 149 ? 53 s in controls). Local blood flow regulation in low-flow POTS is impaired. When I took midodrine, my feet slowly turned blue, cold, and painful over the several days I took it. It makes sense because midodrine works to peripherally vasoconstrict. I wonder if Mayo is incorporating Dr. Stewart's research into their testing??? It just seems that I am classic low flow POTS. Is this the same type that Mayo has described as hyperadrenergic? I hope that Mayo can address my problems with peripheral vasoconstriction. It seems so WIERD that I can have such problems with arterial constriction but still have the venous pooling, tachycardia, and other POTS symptoms from low upper-body perfusion. Janie

ME TOO!!! My first dysautonomia symptom was tachycardia in 10/06 but I noticed itchy red bumps on my toes that winter. They were only on 1-2 toes and I ignored them. I think I put hydrocortisone on them. But the winter of '07-'08 I had purple toes, red bumps, swollen feet for almost 5 months! A biopsy came back as pernio. My dermatologist accused me of putting my feet in ice water! I know of at least one other member here who has Raynauds. My feet are either freezing cold (even if the rest of my body is hot) and purple/white/ or blotchy red, or in summer they are bright red and burning. I did get chilblains on my fingers this winter too. I've been to a dermatologist, podiatrist, vascular surgeon, etc. and no one can tell me why my blood vessels do this. I'm a nurse and have taken care of folks with Raynauds. It seems like Raynauds is more episodic, but in my case my feet are cold for hours on end. But at night, they warm up and turn red and burn again! I can't even have sheets on them because the burning is so tender. Another wierd thing is that I always experience venous pooling in my feet (they'll turn purple and blotchy) and they can be stone cold at the same time. It seems like my arteries constrict while my veins dilate maybe???? I am flying to Mayo in Rochester next Tuesday. I hope they can shed some light on this because there are times when my feet turn completely blue and I can't even feel pulses. I look forward to hearing how things go for you at the Cleveland Clinic!

I had the large fiber nerve conduction test. The neurologist touched a metal probe to the most distal ends of my large nerves (ulnar, radial, etc.) to see if there was any nerve damage. There wasn't. I think this test is most useful if you are noticing muscle weakness.

Suzy, I'm glad I was able to brighten your day. This forum has helped me so many times! My mom is turning 60 tomorrow! Yay! She's had 2 surgeries over the past 10 years to remove tumors, but we are thankful that her tumors are very slow-growing. She is too thin, and doesn't have a lot of energy, and is on lots of meds, but we appreciate every day we have with each other. We try to not look at her diagnosis as being time taken away from us. She sees every day as an opportunity to bless others. I'm blessed to know her. We fly once a year to New Orleans where there is a doctor who has fathered much of the research on carcinoid syndrome so that he can review her scans and meds and let her know of upcoming treatment possibilities. I'm going to the Mayo in Rochester. I'll be seen at the autonomic clinic but I'm not sure which doc will be managing me. It will just be so nice to go to a doctor that I don't have to explain my illness to!!! For me, having a diagnosis was like finally having permission to be sick. Instead of hiding and ignoring people when I felt my worst, I can let them know how I'm doing and we can work around my illness (like if I need to lay down or use my wheelchair, or wait for a day when I feel better). I still wish I could work, but I don't feel so guilty about it now. I'm sorry you had to wait so long to get a diagnosis. Feel free to PM me anytime! Janie

I'm an RN, and it makes me so sad to read that you were ignored and mistreated because you were sick. I can understand how getting a diagnosis makes you feel empowered, that you now have a label that finally gives you validation when you were doubted for so long. My mom had a rare kind of cancer called carcinoid syndrome for 7 years and was told that she was depressed, hormonal, in early menopause, etc. before an endocrinologist took her seriously. When they finally did surgery, she had metastases because she had to wait so long. I ignored my orthostatic intolerance symptoms for a couple years because they didn't make sense to me and because all my tests were normal, except for that darned tachycardia! When my symptoms became so severe that they couldn't be ignored anymore, my wonderful primary care doctor actually took me seriously. She didn't know what was causing my problems so I've had over 30 doctors visits with specialists since 12/07 trying to figure this out. I finally saw a neurologist in November who is sending me to Mayo next week. In the past year I've left the ER in hysterical tears, been told I must have erred when taking my BP/pulse (even when the office nurse takes it), that I don't have any neurological problems (the first neurologist told me), that I must be putting my feet in ice water (to cause the chilblains/raynauds), and that I'm not really THAT sick. When I saw my rheumatologist last month, he couldn't even believe that I was accepted by Mayo because they only accept REALLY sick people! I doubt I will go back to him. It's so sad that some doctors can't see past their own egos and ignorance, but I sure appreciate the ones that do. I hope that you can find a treatment regimen that helps your symptoms. My prayer is that soon there will be a treatment for the disease and not just the symptoms. Thank you for sharing and for persevering!

I have a lot of pooling in my arms, and they feel heavy and painful whenever they are lowered. But it makes my chest hurt and heart race to raise them. So I walk around with my elbows bent and just my forearms elevated.

Most of the time, I do pretty well dealing with the pain and disability. On those days when my thoughts are too dark and dismal, I play some inspirational music and read a lighthearted book. If reading is too much, then I listen to a book on tape. It seems that the reading/listening keeps my thoughts occupied and gets me out of the negative train of thought. My favorite books to escape to are westerns by William H Johnstone .

So sorry to hear you're back in the hospital again. I miss your encouraging posts, and send prayers for healing and strength. Janie

Wow Firewatcher, you come up with great research. Thanks for posting! Janie

After my first ER trip for heartrate over 160, I was put on a 24 hr monitor, and then a 30 day monitor because I would still be tachy in the dr's office. All the cardiologist said was rates went from 40's to 140's with PVC's. He noted nothing unusual. 2 years later, I was diagnosed with POTS by an EP cardiologist who did a "poor man's" tilt table test in his office (lay down, sit, then stand with BP's pulses). Janie

Unfortunately, I think I'm coming down with the flu. For the past 2 days, I've been having GI cramps, and I have been nauseated and slightly feverish for 24 hours. This would explain the excessive heat sensations! I went to a dinner last Saturday for a birthday party and my brother-in-law was sick as a dog and sat across from me. I got a flu shot, so I hope I will recover quickly so I can be my "normal" POTS self when I go to Mayo on 1/28!!! I'm trying not to be too mad at my brother-in-law since the stress will just make me sicker . Janie

I don't take beta blockers.

I would guess that you are probably a little nervous at your doctor's office (understandably) so that could account for the resting heart rate increase. One of my best investments for this disease was an autonomatic BP cuff. I got it at WalMart, but they are available almost anywhere and the cheaper ones are under $50. This summer, my primary care doc asked me to start a symptom diary, so I include orthostatic vitals each day. It helps me to track my responses to different meds, compression hose, diet, or anything that affects my symptoms. And I've brought my docs copies of my recent BP's/heartrates when I have an appt. Also, a month ago I was having problems with hypertension and it gave me specific data to give to my doc when I asked for her help. I know that there are some days when my heartrate doesn't fluctuate as much, and my heartrates don't always correlate with how I'm feeling. But most days, I have at least 30 points difference between laying and standing. Today I was 64 laying down and 134 standing. In normal people, their heartrates don't rise more than 15-20 points on standing. Is the test you were referring to the tilt table test? I would think it would be beneficial. I reread your first post and your symptoms sound like they could be dysautonomia. It wouldn't hurt to do the TTT, especially if they don't give you the meds during the test. Janie

Congratulations! Isn't it great to have a "normal" problem now and then? I have been on Lyrica and Neurontin at different times. The lyrica worked much better than neurontin at controlling my pains and headaches. I even had more energy! It is very expensive (my mom pays cash for hers and it's $100 a week). I had to go off of it because it made me even more constipated than normal . I also gained 6 pounds in the 2 weeks I was taking it. These side effects I had were not unusual and were listed in the pamphlet. But my mom takes it with no problems at all, except that she was a little foggy-headed when she first was titrating up her dose. Lyrica also helped me to sleep more soundly. Take care, Janie

I've had mild dysautonomia symptoms during adolescence that have progressively worsened after a car accident September '06. I had my first tachy episode just after the car accident. I had to quit my nursing job and have two hip surgeries in June '07 and January '08 because the accident tore cartilage and ruptured ligaments. Symptoms became increasingly debilitating until June '08 when my skin started burning and fatigue really interfered with me doing much of anything. Now I spend 90% of my days in bed, laying down. None of my local doctors know what to do with me, but thankfully I am able to go the Mayo Clinic in a couple weeks to see a specialist. I have chosen to not see my life as being "stopped." It certainly is easy to feel that I am without purpose, and to focus on what I have lost, but I try to do whatever I can. Last fall I was able to cross-stitch Christmas gifts for my mom and mother-in-law. Now I find it too difficult to focus and my hands hurt too much, so I started writing a book during the hours that I'm not so tired. Even so, I believe that God is with me and he hears me when I'm tired or frustrated. I also enjoy staying connected to family and friends via phone or internet. I really only have one good friend who has stuck by me, but her friendship is very precious to me. I really think it's a grieving process when you go through chronic illness, disability, loss of friends, etc. It takes time, and I have been helped by seeing a therapist every couple weeks to talk about dealing with all this. I understand how it feels to be so helpless to change anything for the better. I guess what's also helped me is to try to be thankful for those loved ones who have stuck with me and to cherish my relationships with them. I don't know what your options are in Ireland, but there are several members here in the UK who might have suggestions to help you get better medical treatment. You are not alone. I'm glad you found this group! Janie

Wow! It would be great to "outgrow" POTS. I'm 35, and just like you, I assumed that those of us who got sick as adults usually have a chronic course. Thanks for letting me know how you are doing. The burning skin is certainly one of my most distressing symptoms too. Janie

I agree that it seems the more I push myself, the more I pay for it later. I might feel horrible right away, or maybe a whole day later I get this overwhelming fatigue, burning sensation, palpitations/tachy, more pooling, etc. The only thing that relieves these worsening symptoms for me is rest. So frustrating because sometimes it takes so little to set off this negative cascade. Janie

Hi houdinicat, You mentioned that you "used" to get this all the time. What happened? Did all of your dysautonomia symptoms get better or did they just change? Sometimes I also drape damp cloths over my skin and lay in front of a fan. Thanks, Janie

Hi Ernie, The wierd thing is that my skin feels hot when I touch it, but when anyone else touches it they say it's cool. I also get really red, hot extremities with increased pooling, but today my feet are ice cold, but I'm still pooling because my veins are bulging everywhere. Wierdness. Janie

Just thought I'd see if anyone else has this annoying symptom. I know most of us have problems with temperature regulation and that people have strange sensations (like water on their skin, etc). My skin feels so hot sometimes, especially where I have any clothing on and on my head. And when I feel my skin it feels like it's burning up! But when my hubby (who does not have dysautonomia) feels the same area he says my skin feels really cool. I have been diagnosed with small fiber neuropathy, but this isn't really painful, just really uncomfortable. My skin feels like it's been under a heat lamp or something. Benadryl helps with the episodic burning of hands and feet, the burning throat and mouth with funny taste. But I'm still left with the hot skin, although my temp might even be low and my feet are cold. And when I look at the areas of skin that feel this way they look mottled and pink. Anyone else have this problem? What do you do about it? Is this just another malfunction of my nervous system? Janie

I've had mild transient dysautonomia symptoms all my life, but I had my first documented tachycardia episode 3 weeks after being hit in a bad car accident 2 and 1/2 years ago. I had hip surgeries for cartilage damage and ligament rupture 9 months and 16 months later, and noticed progressive fatigue. I also had mono 3 months prior to the accident but don't remember feeling badly until just after the accident (puts into perspective how we feel all the time when I realize that I feel worse now than when I had mono). I think it just pushed my body over the edge into POTS land. I was 32 at the time of the accident.

Oops! Thank you, Melissa, for clarifying when you qualify for Medicare. And I remember that when my mom looked into Oregon's high-risk insurance pool the rates were astronomical. What's been so frustrating for my mom and I is that the sicker you are, the more charges or bills you incur, the more stuff you have to figure out with doctors and insurance companies, which in turn makes you sicker! Hope you can get something worked out. I'm so thankful for my hubby's health insurance, but we have purchased long-term disability insurance for him and a lot of life insurance in case something happens to him. My long-term disability insurer has been trying to get me on SSDI, but I've been denied twice. I am on a waiting list for a hearing (Oregon has the least amount of disability cases approved of any state), and I hope that data from Mayo will be convincing. Dealing with insurance companies is about as fun as hitting your head against a brick wall!