janiedelite

Sophia,

Sorry you have so much trouble in the heat. I'm lucky to be in the Pacific Northwest where the high temp today was 72. Next month we'll probably have to set up our portable AC unit. I hope I can wear at least my hose in the heat... no compression on top of heat... well you know how that feels!

I wear waist high or thigh high compression hose daily, but today I went to Walmart and bought some "firm support" boy shorts. I feel so much more alert... not normal, mind you, but I'm excited to have something else that helps! What made me initially think abdominal compression would help is because lately I've felt like passing out while sitting so I remembered a trick someone here suggested to really suck in you abdomen to try to force blood back up to your brain. Well, that little trick worked for me so I knew I was pooling in my abdomen.

I have a sore left hip (from a car accident and 2 surgeries), and the boy shorts are a little too tight around my hip. I might instead try the velcro band that Sophia suggested. I saw one at WalMart just now labeled as a lumbar support. It's just $10. One package was open so I tried it on over my shirt and I think it will work . Thanks, guys, for posting your suggestions on this thread!!! Like Rachel, traditional meds haven't worked for me and compression gives me some quality of life!

This is interesting. According to the article, POTS patients (who have fluctuating norepinephrine levels with orthostatic changes) would be likely to have problems with aggression and violence. When I'm upright too long, I can feel the changes in my body (palpitations, short of breath, etc.) but I can tell when I need to lie down because I get SUPER GRUMPY! My hubby used to get frustrated when this happens, but as soon as I lay down I'm "happy wife" again! My norepi levels lying was 250 and standing was 1089. Grumpiness for me means it's time to lie down!!!

Arent chillblains just caused by reduced blood flow/frost bite?? Im confused about how that relates to connective tissue disorders?

POTS and raynauds are connected - connective tissue disorder or otherwise.

I had a biopsy of the chronic sores on my feet which came back as pernio. As my POTS worsened, I got more sores on my feet and I hardly went outside at all. The biopsy read "deep and superficial perivascular lymphohistiocytic infiltrate" which, to me, means I had a bunch of immune/lymph cells causing inflammation around the blood vessels throughout my skin. I also had a "possible connective tissue disorder" diagnosis because the hyperactive immune response could be caused by an autoimmune connective tissue disorder like lupus. They also thought I might be having an immune response to a drug reaction (I wasn't taking anything), and my dermatologist accused me of putting my feet in ice water

Mayo diagnosed me with small fiber neuropathy/post-viral POTS which research has talked about being an autoimmune process. My ANA and sed rate are always normal, but I have a chronic sore throat and my lymph nodes swell sometimes. I think the biopsy just confirms that my immune system is messed up. I easily get sick and will get symptoms twice as badly as whoever gave me the bug.

My chilblains are kept at bay by staying warm (but not TOO warm ) and reducing orthostatic stress as I produce excessive norepinephrine on standing which further vasoconstricts and exacerbates my pernio problems. When I'm stressed, cold, or active, my feet often turn bluish and I can't feel pulses in my feet and my capillary refill time is delayed (when you blanch your skin it should turn pink again within 3 seconds). As soon as I stand still or reduce the stress, I have an exaggerated hyperemic response and my feet and hands get red and hot and burn. I've been diagnosed with raynauds and pernio, erythromelalgia, etc. As far as I'm concerned, it's all just POTS.

As far as I know, blood pooling should not cause an abnormal clotting time. Was it your PT that was prolonged? Mack's mom just posted about her son having abnormal bleeding and there was a lengthy discussion on the post about chronic GI issues causing vitamin K deficiency which can prolong PT (prothrombin time) and INR.

Was the clotting time just slightly prolonged? Did your doctor ever follow up on it?

Thanks, Mkoven, for sharing how you found your masseuse. I don't have resources through a doctor's office like you described, so I'll just call around.

Flop, whenever my PT works on my hip or my back my skin also gets really hot and red, moreso than any other patient she's seen. I don't know if it's just an exaggerated histamine response to the inflammation caused by her massage (I find some benefit for my POTS symptoms in a daily antihistamine and might have MCAD). When my adrenaline gets pumping, my face flushes but sometimes my torso flushed also. So this might have something to do with our sympathetic nervous system being extra sensitive too. This is interesting because I don't have EDS, but we seem to have a similar response to massage and myofacial treatments.

YES! I've been getting myofacial work by a PT for back pain and hip pain. Whenever she particularly works on my thoracic spine, my hands and feet will get white, cold and sweaty. I also flush and my cheeks will be flushed for a couple hours afterward. We were very curious about what's happening so I brought my BP cuff and prior to the massage my BP was 120's/70's but afterward it rose to 139/95. Does your masseuse work on you thoracic spine? Our theory is that since the sympathetic nerve chain runs deep right under the thoracic spine, the more she worked on my thoracic area the more peripheral vasoconstriction and flushing I experience as more adrenaline was released.

You might bring your BP cuff and take readings before and after. The PT initially thought she could calm my sympathetic nervous system by working on my thoracic area (which is often painful and tight), but we've realized that since my sympathetic nervous system is overactive as a reflexive response to chronic pooling, the myofacial work on my thoracic spine just further stimulates an already overactive sympathetic nervous system. It's kind of like poking an angry tiger...

I've been going to PT for a very long time for various ailments, and it's not really bringing about a lasting improvement in my pain and function anymore. As a result, my doctor probably won't prescribe more visits for now. But like you, I have a lot of back and joint pain from the dysautonomia and could really benefit from a good masseuse trained in myofacial work. How did you find your masseuse? What kind of questions did you ask? I understand why my doc doesn't want to prescribe more PT, but I'll pay out-of-pocket for a good massage a couple times a month. Thanks.

I haven't been diagnosed with low-flow POTS, but Mayo said I have a hyperadrenergic response to pooling (I pool everywhere; legs, abdomen, arms, feet, hands). My legs don't swell much but my abdomen does. I have red, hot feet if I'm a bit warm, and pale or bluish purple, cold feet if I'm a bit cool. Mayo said my adrenaline gets pumping in response to the lack of blood flow to my brain, from the pooling. I've wondered if this was the same mechanism described in low-flow POTS. So Mayo said to address the pooling and then the adrenaline and vasoconstriction response should subside, which it has. I've even had itchy sores on my feet from the chronic vasoconstriction, which was biopsied as pernio/frostbite. The sores haven't reappeared since I started wearing either thigh-high or waist-high hose last November. (I'm also staying warmer too!). My BP goes up on standing, mild stress, even talking, accompanied by bad chest pain. I still get this but it is not as severe.

I can't really tell a difference once I put the hose on as far as my fatigue level. But my heartrate is about 10-15 beats less on standing. And when I take them off at night I feel like a deflating balloon as my blood settles in my lower half again. I only wear 20-30mmHg hose as the higher hose constrict too much. So, I guess hose help me more in the long-run too as far as lessening the duration and severity of my flares somewhat.

I pay out of pocket. My PCP and I are trying to get my insurance to pay but they only cover upper body compression due to venous stasis ulcers post-mastectomy. I've sent them my Mayo doc's notes and recommendations, PCP's script, etc, but no deal. So I pay about $115 for my Jobst waist-high hose (still wearing the pair from last November, runs and all), and $25 for my Allegro thigh highs (which I wear if my tummy's too sore). I'm still fighting the insurance, but I'll still buy my hose if I have to.

Just my experience, hope you find something that works for you!

I live in Portland, Oregon, and our climate is almost identical to Seattle. Winters see rare, brief, ice or snow. Otherwise weather is 30-40's and rainy. Spring and fall are usually rainy 40-60 degrees. Summer is sunny with highs usually 75 to 90. The thing is, there's NO DOCTOR in the northwest who knows about dysautonomia. And the only type of testing available in Portland was a TTT at Oregon Health Sciences University but last my PCP heard it was broken . My PCP and neurologist would send me anywhere, but I ended up going to Mayo in Rochester. Also, know that many houses/apartments don't have air conditioning. We are currently trying to save up money for central air.

I like our weather in Portland because most of the year, I can be outside (I just bring an umbrella). I get really sensitive to light so the cloudy days are great! We've considered moving in order to be closer to an autonomic specialist but decided to travel back to Mayo if needed instead.

I grew up in this area and really don't mind the gray days, but some of my friends who moved here from sunnier places find it depressing.

I had an eye exam about 6 months ago while I was quite POTsy, and just had severe sensitivity to light and some more dizziness. Be sure someone else drives you home. And, one optometrist I saw actually has drops he can put in that shrink your pupils to normal size! This doc unfortunately didn't have those drops. Normally, my POTS makes me very light-sensitive, so hubby drove me home while I held a book over my face and I laid in a dark room the rest of the day...

I have POTS with a hyperadrenergic response, so my BP goes up with orthostatic stress. Mayo advised me to increase salt, fluids, compression, etc. The doc said that if I address my pooling and low blood volume that my hyperadrenergic response should subside also. He was right! For me, prior to implementing a high salt intake, my standing BP was easily 140's/100's, and lying was 120/60's. Now my standing BP is on average 130's/80's, lying is 110/60's. If I have any type of stress, like even having a casual conversation, it will go higher. Compression helps too. When my BP was above 140/95, I'd feel my pulse in my head, have pounding chest pain, and it was a horrible feeling. I still get it occasionally, but laying down will usually reduce these symptoms within an hour or so.

I did 2 urine sodium tests at Mayo. The first came back at 75 (which the doc said was quite low). He told me to increase my fluid intake to 3L/day, and the next week my sodium was in the 130's. That was without even increasing my sodium.

Vitamin K deficiency is very rare. It occurs when the body can't properly absorb the vitamin from the intestinal tract. Vitamin K deficiency can also occur after long-term treatment with antibiotics.

http://www.healthline.com/galecontent/vitamin-k-deficiency

My mom has chronic vitamin K deficiency which was discovered by an intelligent anesthesiologist who was puzzled as to why mom wouldn't stop bleeding after they started an IV. She checked clotting times and they were 3 times normal! Surgery was cancelled! Now she is on oral vitamin K daily.

Anyway, a hematologist was paged and figured out this: Vitamin K is actually produced in the small intestine as a bacterial byproduct. Mom had a shortened intestine and continuous dumping syndrome/diarrhea from carcinoid syndrome. The constant diarrhea stripped her gut of the bacteria needed to produce vitamin K. The liver stores vitamin K, but she'd been slowly growing more deficient for so long that she had exhausted her liver stores.

So yes, vitamin K deficiency can happen in people with intestinal malabsorption or liver disease. It is rare, but easy to check as any physician can draw clotting times (specifically INR and PT). It should definitely be checked out!!! They could easily check for other clotting factors at the same time that would detect deficiencies in other clotting factors.

By the way, green leafy vegies are a great way to add vitamin K to your diet.

Good thing I honored my instincts and saw my internist today. Even today, with activity, my arm was in pain, hot and itchy.

Good for you! I'm glad you're getting taken care of properly finally.

Oh, it's really too bad how you were treated. Like you said, you contributed to their profits that night! I think sometimes healthcare professionals forget what it's like to be the one on the stretcher. As for me, my perspective has forever been changed, and not just because of my many POTS-related appointments but from watching my mom go through her cancer journey. We're all the same, with the same needs and fears, it's just that one of us wears a white coat. If I'm fortunate enough to ever work as a nurse again, I will do my best to make a positive difference.

Sounds like you're keeping an eye on your arm!

I was diagnosed with a very slow small intestine which I was told is a byproduct of too much adrenaline produced when I stand. For me, laying down while and after eating helps. Also avoiding stress helps (easier said than done). I try to eat small meals more frequently and avoid very fatty meals.

I think Miriam has good ideas about using a pool for exercise and making sure you are in alignment. In Sept '06, I was t-boned in a car accident the left me with whiplash and left hip pain. I had 2 hip surgeries, in 6/07 and 1/08, because multiple MRI's, xrays, and bone scans couldn't find anything. In the first surgery he found dented femur, torn labrum and inflammation throughout. I still had pain afterward and could hardly bear weight. I limped severely for 2 years, and in the second surgery he found a ruptured ligament he missed the first time as well as lots of inflammation. NONE of this showed up on any of my scans.

But I still had intolerable pain in my hip after the second surgery. What really helped was seeing a PT regularly who specialized in myofacial release. After limping so long, I ended up messing up my back and all of the supporting structures because I walked so crookedly. The first PT I saw post-op prescribed primarily exercises, which I wasn't able to do because the muscles and facia surrounding my hip were so tight and knotted up. I saw a PT in 6/08 who worked on me weekly to release the knotted muscles. It was quite painful at times, but she knew how to work with my body to get the muscles and surrounding tissues to ease up. I also had quite a bit of scar tissues from prolonged inflammation and surgeries.

It was a long road, but in Sept of '08 I was finally able to walk without the aid of my cane! My mom said I gained 5 inches because it was the first time she saw me stand without leaning to get off my hip in 2 years. I still go to PT and will probably always have residual pain and back issues, but the pain is manageable for the most part. I think if I didn't have POTS, I could work more on strengthening my hip and doing regular stretching. But many days my body just won't let me.

I've had over 100 PT visits due to my hip, and I think my surgeon would have given up on me and called me crazy except that I worked as a recovery room nurse where his patients went post-surgery.

I guess I shared all this to say that doctors are great at fixing immediate injuries, but often the tissues surrounding the injured area suffer from inflammation, lack of use, misalignment, etc. as a result of the injury. Do you have insurance coverage for PT? Can you get your doctor to write you a prescription for PT? If you get a prescription, call the PT office and ask if there is a PT who specializes in myofacial release. Also, it was my PT who originally diagnosed my hip injury and send me to an orthopedic surgeon. I'm sorry you're having such prolonged pain. When my back and hip are acting up, my whole lower body hurts and my opposite hip clicks frequently.

Yay! So glad your baby looks like she's healthy. As far as the TTT, it might be a little scary for him because when they stand him up his legs will be strapped in so he can't move and relieve his symptoms. Just reassure him that he probably will feel a lot worse, but that there will be technicians with him who will make sure he is safe, but that they need to actually provoke his symptoms to see what his body is actually going through when he stands up. Some places use an IV and give medication during the test, but most places don't. You could ask the doctor about this, but if he's a pediatric specialist I bet he'll know how to talk with your son and prepare him.

With POTS, our BP's stay the same or go up. With NMH, BP drops. They are both a dysfunction of the nerves that regulate vasoconstriction.

I have pretty bad reflux, but didn't notice it being worse when I was on midodrine last year. I used to wake occasionally, choking and unable to breathe. It is extremely startling! Since I raised the head of my bed a few inches, my nightly reflux symptoms are much better and I don't wake with the choking anymore.

Thank you for posting on this topic, Potsgirl. My grandmothers all suffer from fractures due to osteoporosis. My great-grandma was known as "grandma in the bed" because she was bedridden from fractures for the last 10 years of her life. My mom has had osteopenia for 10 years. I don't want to spend my older years suffering like my grandma did. I'll mention this to my doc when I see her next!

YAY! That's awesome! So glad you're able to do all that stuff around the house! I love the days I can be active. They give me hope on during the days in between!

Hi Worried Mom,

Please encourage your son that his problem is not from lack of conditioning, as it seems he is quite active, but due to an actual physiological problem. Please see the specialist, and if he doesn't give you satisfactory answers and testing, then see another one and another one. I'd had 40 dr's appointments when I first got ill within a year, but didn't get the answers I needed til I went to Mayo to see a neurologist who specializes in autonomic dysfunction. It is scary, but please know that most of us with POTS have ups and downs, but generally have stable symptoms. We just have to learn to live with some accomodations and limitations. Keep pushing for your son to get the answers he needs. He's so blessed to have such a persistant and caring mom!!!

6 months ago, alcohol reduced my chest pain and palpitations and made me feel better! However, now even just a small amount makes me feel SO heavy and tired. I avoid it totally now.

Glad you figured that one out! I would have been scared too! Hope you climb back out of your POTS hole soon...

The three hormones they test for are norepinephrine (NORA), epinephrine (ADR) and dopamine (DOPM). Norepinephrine is the one that commonly goes up during hyperadrenergic states. I think a standing normal norepi level is about 450 (don't quote me). In other research, I've read that 600 or higher standing norepi was diagnostic of POTS. My lying norepi was same as yours, standing was 1089. Mayo said I was "mildy hyperadrenergic." I've heard of standing norepi over 2000. Can't imagine what that feels like.

I can't take midodrine because of my chronic hyperadrenergic state. I've had chronic frostbite because my vessels are so clamped down, and midodrine exacerbates this. My BP goes up significantly on standing, or even talking. I flush often. etc.....

However, as the Mayo doc told me, my hyperadrenergic response is a normal response to an abnormal problem. I'd rather have the response than not, I guess, or you'd never peel me out of bed! I think Dr. Stewart is onto other mechanisms involved in POTS, too, and maybe hyperadrenergic POTS is just another description of his "low flow" POTS patients???

Oh, that's a tough one. I'm sorry, and I hope someone at the shelter realizes how unwell Riley is.

We had gotten my mom a shelter cat last year. She was sweet, docile and perfect! We named her Patches. My mom can't work anymore because of her carcinoid syndrome and spends much of her time alone at home, and she enjoyed Patches' company. Patches got brushed every day and loved it until one day, a couple weeks after she was adopted, during her brushing she snarled and leapt at mom's face, biting mom's nose and clawing her scalp! Poor mom called dad, who was running errands, and dad called me and told me to go help mom as she was very distraught. I took her to urgent care where she received antibiotics and some pain pills.

Meanwhile, dad and my hubby had trapped the cat in a bathroom and were deciding which firearm to use on it... until they realized they'd be arrested for discharging a gun in the city. So they called all the local vets to have the cat put down, but none of the vets would take her! So they called the shelter and returned Patches, and were given a coupon for another free cat. They were told Patches would be put on observation for 14 days and then.........

My mom has short bowel syndrome, and always gets dehydrated and malnourished on antibiotics. She lost quite a bit of weight due to the antibiotics and has now finally regained it a year later. Also, my two dogs keep me so busy that I realized Zoie, my cat of 5 years, has been somewhat neglected. Now mom has Zoie and is happy to dote on her, which makes all of us happy too!