Clairefmartin

That's what mine do! Polka dots!

Does anyone have suggestions for blood tests I should request from a hematologist? I'm going because I have the factor 5 Leden clotting gene (heterozygous), and am prone to clotting, but I think this is a chance for me to ask for other blood panels relating my my dysautonomia. I've only been diagnosed with POTS, I think I'm hyperadrenic, and suspect MCAD & ME. I also have fibro and Raynauds and possible Celiac (definite gluten intolerance, have been gf for 7 years), and wonder if I have other autoimmune issues, as all the women on my Mom's side of the family do. Just thought I'd ask for any panels you may have had that were useful in diagnosis/treatment. I'm in major flare up mode right now and am re-motivated to get answers. THANKS! Claire

Well, my previously mentioned symptoms turned into my right cheek turning red and swelling up! And pain all in my ear, back of my ear, and the weak/tingling/stinging feeling. Almost like when blood flow returns after a bought of Raynauds. Weird! My doc wanted me to go to the ER when I called, said it could be a tooth or infection of some kind, but I took some Ibuprofen and its subsided a bit. Sue - I haven't had any BMPs since being in the hospital, but maybe I will ask for one. They have always come back normal - my sodium gets a bit low, and actually while pregnant my calcium was on the low side of normal, so that may be a good start. And I have been reading up on MCAD, I have almost all the symptoms. Not sure who to see about this, but i'll ask my primary, he's great (thank God). Anyways, thanks for the input!

I am having an increase in a symptom I've had mildly for years - the right side of my face starts to feel weak and tingles. My eye feels droopy, the right side of my mouth and face feel tingly and weak, and even my ear feels weird. This has intensified this week. In fact today it seems every time sit up it happens, and my ears both go numb/tingly as well. I have Raynauds, so I thought maybe it was a blood flow issue, so I laid on my right side thinking the blood would get back into that part of my face, and it worked a little, but I think its something more. Maybe hypoglycemia? Or anxiety - CO2 issues like when you hyperventilate? My extremities and feet tingle all the time, I have not been sure if again - it's the blood sugar, breathing/CO2 issues, or maybe some kind of neuropathy? I am recovering from a 9 month bed rest and the labor/birth from ****, so my body is a deconditioned mess. I've read about small fiber neuropathy and autoimmune neuropathies, and am wondering if this may be the case. Any input? What kind of doc would I see about this? I was sent to the ER a few days ago because my S/D BP had a 90 point gap and I could barely talk, and my right side was doing the tingling weakness thing. I got IV fluids and felt a bit better. I'm nursing right now and I think my hormones may have shifted or the baby is drinking more, but less frequently, and (TMI ALERT) I got my period again for the first time last week after giving birth 3 months ago. I had been doing "well" and making progress, and then over the last 2 weeks I have been feeling terrible again. I'm not retaining fluids as much, I can feel it. I'm wondering if that may be causing this, something shifted and my hypovolemia increased? My cardio is trying to get my into Vandi - not sure when that's going to happen. Also trying to get set up with a local Endocrine Doc to get an Autonomic workup, as I have never had one. I'm almost positive I have hyper-pots, probably low flow. My cardio EP said I could get the work up, but he may not know what to do with the results. At least he admits it Anyways - anyone else get this sensation? I'm sick of new weird things happening, it kind of frightens me. Thanks! Claire

Thanks everyone! Great ideas and tips. I'm lucky that my hubby will cook as well, he is just doing so much right now I'd love to be able to prepare a few meals here and there to help out. I live from a cooler bedside all day and have an extra microwave in the baby's nursery where I'm currently set up, along with basics for the day when my husband is gone and its me and the baby hanging out. I'd like to go to the kitchen, but I'm just to nervous that I'll crash and need to stay safe and in bed (we have a bed in the nursery) for baby, so I keep everything nearby just in case, and if I feel well I get up. I wanted to make GF pumpkin pie for tomorrow, but after my ER trip today I'm pretty wiped, so I don't think I'll be trying that. I think I may just leave the chopping or anything knife related to my husband, but I can try and do everything else from my reclining wheelchair. We'll see! Thanks again!

I agree - if you go in for something POTS related, use the term POTS, but if its anything not specific to "POTS typical" issues (dehydration, hypovolemia, BP issues, etc...) than use the dysautonomia terms. I went to the ER for fluids today and was pleasantly surprised, my BP had been acting really weird (90 point difference between s/d), my home PT and Cardiologist's nurse told me to go, and I told the ER what was going on, and that usually IV fluids are a quick fix for everything for me, and they said "no problem" and hooked me up. It probably helped that my arms looked so devoid of veins that they thought i was dehydrated. I had right sided weakness/tingling in my face today, which has happened before, but not this pronounced, and I was so brain foggy I couldn't speak as well as I usually do, so after ruling out a stroke they let me run the show. The doc even offered me another bag of fluids if I wanted them, and felt I needed them (which I declined). My BP stabilized and I felt better as always. It was the best ER experience I've had. Anyways, just wanted to share. I find that the more confident and educated you sound, the more most doc's respond. I always tell them I have a biology background and read the JOURNAL articles, not google. I have a few saved on my phone, I have even offered to share with them in the past in a non-condescending way. That seems to help too. Hope you have better luck next time!

They need a POTS discount!

PS - my reactions are so severe right now, I think if someone I was close to or a family member died I would have a heart attack. My dog almost died while I was hospitalized so I hadn't seen her in 4 months, and my BP shot from 70-80/40-50 to 180/100!!! They had to sedate me. She pulled through thank God, but it freaked me out.

I"m happy to hear others talk about this - I have said for years that I feel I get "overstimulated", sometimes just walking into a big store like Walmart will set off my symptoms.....I still am trying to get testing done to see if I'm hyper-potsie, but am almost positive I am due to my response to the slightest stressers and the massive adrenaline surges I feel constantly. Even movies sometimes get my system going, watching at home even! I cant image being in a movie theater right now. I take Klonopin to help me chill, its been the only thing that keeps me from being totally set off (physiologically) from every day situations. The motion of a vehicle, any extreme emotion - even elation, big overwhelming environments with loads of bright lights and colors all seem to make me light headed, heart pounding, I start greying out, esp. in my right eye and on my right side (weird!), but its not a mental response, its a physical one. I really like people and being social and going out, and going to movies and music shows, but can't imagine doing that now. I hope to get it back some day, its very isolating, especially since I've been stuck in either a hospital or in my house for all of 2011. My only journeys outside have been in ambulances and by medical transport. Anyways, best of luck to everyone, it is really comforting to know this doesn't just happen to me.

I have both Fibro and POTS, I think many people do actually, I'm having a foggy brain day so I can't put into words why the connection ....BUt the pain in your head stuck out to me, as well as your head movement issues - ask or research a Chiari Malformation or Cervical Stenosis. I think both have been linked to Fibro and POTS. Just a thought....a foggy thought! Hope you feel better and find answers.

Any suggestions? I have a reclining wheelchair, but the legs have to be up for me to feel well for more than a minute or two, and they make it impossible seeming to function in the kitchen. Thanks!

I agree! You have to do what you are comfortable with, but POTS and many dysautonomias wax and wane - I actually had 3 good years where I led a completely normal life. But before that I had to leave my teaching job because of all the standing and stress involved. I've had POTS and a bunch of other stuff since 2003, and I can tell you that its different month to month, week to week, and many times day to day. I just spent most of 2011 in the hospital while pregnant and almost died of blot clot complications, had to close my businesses, and missed my family terribly, and even now - I've been stuck in doors recovering for 3 months, still not able to get in and out of our place to go out, but I KNOW IT WILL GET BETTER. Chances are, you will feel better, many people go into remission or have swings triggered by different things such a myself. Hang in there and keep your head up!

Cool! Do you have others in your area? Do you guys have meet ups or groups?

Hi there, I joined them meet others program, but am confused as to how it works. So I thought I'd post here, hope that's ok. I was wondering if there are any dysautonomia/POTS folks in my area??? If so I'd love to connect, even if its just online. Its nice to know there are others here locally and be able to share info on local stuff. Or if someone can tell me how the meet others thing works I'm all ears All I received was an email saying I'd joined. Thanks!

I've been wondering the same thing, thanks for posting. i get pain and redness in my feet sometimes, but i feel like the blood is running away from my feet most of the time, they are white and cold and tingly. Weird :/

Misstraci- The clots were caused by a PICC lines that was not cared for. Insurance wouldn't pay for me to stay in the hospital, so they sent me to a "rehab" aka nursing home to continue IV fluids, and they never flushed or used heparin (blood thinner) in the line. It caused massive clotting along the line, They refused to listen to me when I told them something was wrong, and had me messaging aspercream into the area where my jugular was clotted off almost completely, which caused the clots to break off and migrate into my heart and lungs. It was a mess and almost killed me! My new goal in life is to not have myself or anyone I love in a nursing home

RubyTuesday - thanks for the breakdown, the aqua training sounds neat. At the hospital we tried (the OB nurses - since PT wouldnt work with me) a foot peddler, which seemed to work ok, since if I needed to I could recline and use it. I may and try to find one or see if insurance will get me one (yeah right . I hear you on ot wanting to get rid of your stuff - and actually it may be good motivation to keep going so you can use it again, hopefully you'll feel better in the future and be able to. Thanks and good luck!

Thanks - and it is actually quite a bit just taking care of the baby, my physical therapist reminds me of that when I am already wiped out by the time she gets here. I am doing basic exercises but just the act of walking is a work out! I used to feel strong, I hate this feeling of weakness. Thanks for the encouraging words.

Well I finally have a laptop again so can read & participate in this forum, have been out of the loop for a long time. Was in hospital for 9 months of 2011 dealing with pregnancy setting off my POTS in the extreme. Then I developed multiple DVTs/blood clots from a PICC line in my arm, a dozen pulmonary embolisms, and a clot in my heart. Sooooo....they had me basically on bed rest for 9 months. Only walking I did was a step or two to get to the bedside commode. My POTS was so bad that I was passing out constantly during the 2nd trimester, and my heart rate would go from 75 to 160 upon standing, and I had vasovagal events for the first time (very scary!). Anyways, I made it through induction and birth somehow (it was horrible and terrifying) and the baby is gorgeous and healthy (thank God!), but I am completely deconditioned from these idiot doctors making me stay in bed after I told them I needed to keep moving as much as possible. PT wouldn't even work with me due to the liability of a pregnant lady on blood thinners falling. I have been doing home PT in small amounts for the last 10 weeks since having the baby. It took me 3 weeks just to recover from birth, but I'm able to walk a bit and get around in a reclining wheelchair most of the time. I take care of the baby (my 3 year old goes to daycare/preschool) while my husband is at work and am now alone during the day. Its rough. If I accidentally overdo activity, I pay for it big time and can't move/crash. I'm getting very lonely and impatient because my POTS was not too bad before this situation. I can't get out of our building due to stairs (last time we tried my BP was 68/58 and I was barely conscious), so I'm stuck at home until I can conquer the stairs. If anyone has suggestions for reconditioning I'd appreciate it. Its just nice to be back on here reading and not feeling quite so alone with this terrible disease. Claire

I have had a generalized POTS diagnosis based on just a tilt table test from 8 years ago, and just by hooking me up to a monitor at any time a doc can see my HR go way up upon sitting up and standing (30-60 BPM depending on hydration). I have always wondered if I have other ANS issues (I have loads of symptoms from many of the diseases - many overlap, very confusing!). I think I would be able to find better treatment after I have this baby (I'm 15 weeks pregnant and in a terrible flare up) if I can nail down a more specific diagnosis - like the hyperadrenic or hypovolemic forms of POTS that I think I am. I'm really conerned about functioning after the baby is born so I can get back to life, my 3 year old, and this new baby. Oh and maybe pay attention to my husband too Any suggestions as to where to go to get the testing done?? VandY? Mayo? Am willing to travel! Thanks! Claire

Well, I am happy to report that I am at Hopkins, and have been meeting with lots of docs regarding my situation. They immediately came up with a fairly basic plan to get me off fluids and get my POTS managable, and I was really skeptical and a bit let down that they wont do any more testing because I am pregnant - but it is working! They outfitted me with thigh high compression stockings, calculated how much salt and fluid I needed to consume, and got rid of the IV fluids cold turkey. My POTS feels much better in terms of the dizziness and my blood pressure came up immediately after putting on the stockings. My heart rate has been running pretty high today, but is not too bad. Now my clots are a whole other issue - it turns out I have a 2 cm clot inside my right atrium! This is not what I was originally told at the local hospital I came from, so its been a bit stressful. They say its attached to the wall of my heart and stable, so the blood thinners are all they recommend since the clot busting drugs are so dangerous. My lungs are not doing well either, when I stand up my o2 levels drop into the low 80's, and yesterday I had my first vasovagal event. luckily the doc was with me and recorded it and i laid down before passing out, but it was freaky. They did get me a reclining wheelchair today, which I get to try out tomorrow, I am so excited to not be in a hospital room and hopefully get some mobility back (its been 10 weeks!). And happily the baby is healthy and has a fast but healthy heart rate just like me Maybe its a girl (old wives tale). Thanks again for all the support!

Thank you all for the input and encouraging words! Cat Lady - from 2003-2007 I took Toprol (beta blocker) and added Florinef in 2006 and it controlled my symptoms fairly well, I was able to exercise and work and lead a normal life. I did have to leave teaching in 2006 because of all the standing and stress, and that is when they added the Florinef. I went off meds with my first pregnancy, and then unfortunately miscarried at 8 weeks. I got pregnant again 2 months later, but had felt well enough to stay off meds. I threw up a lot with my son's pregnancy, but all my POTS symptoms were gone. I have been med free since, and just managed with the low dose of Klonopin. I have flare ups now and then of tachycardia and mild dizziness, but usually staying hydrated and eating smaller meals throughout the day helps, and I have been ok. I actually own two very active and stressful businesses, and have led a fairly normal life chasing my toddler around. I think that's why this is so hard, I have NEVER felt this bad, and my life has come to a screeching halt. I was tested for all the genetic issues that cause clots, and only came back heterozygous for Factor 5 Leiden (increases clotting risks 4-8 times). The docs said that was the most common, and not a big deal, so that is good. I had a scary night last night - after feeling totally dehydrated, weak, and very tachy all day, I woke up and could barely move. They took my BP and it was 86/40, which is really low for me. My heart was pounding every time I rolled over in bed, and I just felt so weak! They finally agreed to bump my fluids back up a bit to 100cc's/hour, and I drank a ton of gatorade, and I guess it helped a bit. My heart rate is still high when I'm laying down, but my BP has come up a bit. I had a doctor tell me today that he knew his medical limits, and I was "over his head" and they are talking about trying to transfer me to either UVA or Hopkins (those are the only two close enough for medical transport). If anyone knows of any POTS docs within reasonable distance of Hampton Roads VA (Southeastern VA near NC) let me know. I feel like this is my chance to get some answers, I 'm in this terrible flare up and maybe I can get a more specific diagnosis. The only testing I've ever had done are tilt table and general orthostatic testing, I have lots of other weird issues that I suspect are sympotoms of other autonomic issues. My EP just does beta blockers and florinef, I've never even been tested further because I generally am ok. Anyways, another long post - sorry to ramble. I do really appreciate everyone's feedback!!! Claire

Thank you all for the input and encouraging words! Cat Lady - from 2003-2007 I took Toprol (beta blocker) and added Florinef in 2006 and it controlled my symptoms fairly well, I was able to exercise and work and lead a normal life. I did have to leave teaching in 2006 because of all the standing and stress, and that is when they added the Florinef. I went off meds with my first pregnancy, and then unfortunately miscarried at 8 weeks. I got pregnant again 2 months later, but had felt well enough to stay off meds. I threw up a lot with my son's pregnancy, but all my POTS symptoms were gone. I have been med free since, and just managed with the low dose of Klonopin. I have flare ups now and then of tachycardia and mild dizziness, but usually staying hydrated and eating smaller meals throughout the day helps, and I have been ok. I actually own two very active and stressful businesses, and have led a fairly normal life chasing my toddler around. I think that's why this is so hard, I have NEVER felt this bad, and my life has come to a screeching halt. I was tested for all the genetic issues that cause clots, and only came back heterozygous for Factor 5 Leiden (increases clotting risks 4-8 times). The docs said that was the most common, and not a big deal, so that is good. I had a scary night last night - after feeling totally dehydrated, weak, and very tachy all day, I woke up and could barely move. They took my BP and it was 86/40, which is really low for me. My heart was pounding every time I rolled over in bed, and I just felt so weak! They finally agreed to bump my fluids back up a bit to 100cc's/hour, and I drank a ton of gatorade, and I guess it helped a bit. My heart rate is still high when I'm laying down, but my BP has come up a bit. I had a doctor tell me today that he knew his medical limits, and I was "over his head" and they are talking about trying to transfer me to either UVA or Hopkins (those are the only two close enough for medical transport). If anyone knows of any POTS docs within reasonable distance of Hampton Roads VA (Southeastern VA near NC) let me know. I feel like this is my chance to get some answers, I 'm in this terrible flare up and maybe I can get a more specific diagnosis. The only testing I've ever had done are tilt table and general orthostatic testing, I have lots of other weird issues that I suspect are sympotoms of other autonomic issues. My EP just does beta blockers and florinef, I've never even been tested further because I generally am ok. Anyways, another long post - sorry to ramble. I do really appreciate everyone's feedback!!! Claire

Hi Dani Just wanted to let you know that I had vertigo for a month straight and they thought I had Menheir's Disease, and my ENT did a hearing test that came back positive for swelling of the tissue in my ears. I do not have that disease, as both my ears were bothering me and once they pumped me full of fluids, it cleared up. My whole body had stopped retaining fluids - except my ears! I think when they got me fully hydrated again everything equalized and the vertigo went away. Hope that helps somehow - good luck - I know how horrible it is! Claire

Hello all, I have had POTS for 8 years now, and had my son 3 years ago with no complications - actually by the second trimester I felt better than I had in years and went off all meds. Had an epidural and vaginal birth, recovered quickly, and have not been back on my beta blocker or florinef since. Was taking 1 mg Klonopin (.5 2x daily) when I found out I was pregnant again, and immediately saw the OB and started coming off it. While decreasing the dose, my POTS sympotoms went bonkers. Within 10 days of finding out I was pregnant, I went from almost med free and very active, to being completely bed ridden with extreme dizziness, fatigue and weakness, increased tachycardia, and a new extra fun symptom - vertigo. I have now been in the hospital (been home a total of 6 days) since the first week of January, and am only 14 weeks pregnant, and am freaked out. In late January a PICC line was put in so I could go home with fluids, but instead of home they sent me to a "rehab" nursing center (I have been unable to sit up or stand for more than 2 minutes woithout feeling like passing out, and the vertigo kept causing me to fall). The nursing center failed to use heparin and flush the PICC line, and I developed 5 DVT's along the line, as well as a big fat clot in my jugular vein. I went home for a day and then was sent back to the ER where they finally discovered the clots. I was in the hospital for 8 days, all the while on fluids, and the pressure in my head, neck, and chest when standing kept getting worse. They decided to keep the PICC line in and sent me home again, barely able to get mysef to the bathroom - I could not breath when I stood up. Home for another two days, then the home health nurses sent me back beacuse my chest pain got worse. Turns out I had multiple pulonary embolisms in both lungs and a new clot on my heart. The Lovanox (long acting Heparin) was not working, they have since found I need a really high dose to keep my blood thinned. So....now I'm still in the hospital recovering from the PEs, still having major issues when I stand or sit up, there is insane pressure in my chest, my neck, and in my head when I sit up to far. I'm also excreting more fluids than I'm taking in, so they are discontinuing salt pills, they think it may be making the fluid situation worse. The PICC line was removed, and I am running out of veins in my good arm, and they are going to try and ween me off fluids next week slowly and see how I do. They cut me down today to 75cc's/hour, and I feel horrible. I feel really dehydrated and my dizziness has gotten worse since they started decreasing the fluids from 150 cc's. My BP is lower and my heart rate higher, but they want to keep trying to get me off fluids. I have a decent EP (cardiologist), but he's only had a few other pregnant POTS patients. My high risk OB docs are scratching their heads, but are willing to call Mayo to consult with the neurologists over there if I don't imrove. There are no local neurolgists that will even see me, they have been looking (and I have been looking for years) and they wont even talk to me. So if anyone has any ideas or suggestions, I'm feeling pretty overwhelmed and scared about everything. I may feel better and retain more fluids into the 2nd trimester, but no one knows of course. They are talking about trying florinef, but I'm freaked about how it will affect the baby. My blood pressure has been stable as long as I'm pumped full of fluids, but I'm really wondering why/what is cuasing my fluid retention issues. Sorry this is so long....its been quite an ordeal! Thanks in advance for any input! Claire