Clairefmartin

Thank you both! Issie - thank you for the liver tips, after I see the GI I'm going to start a regiment of suppliments. I have been holding off for someone to get a baseline and see where I am defciient, no one has checked yet. Potluck (great name BTW), I did see your post - and thanks for your feedback. My BP initially goes up when I stand, then crashes. Sometimes we only catch it when it crashes, the last time they managed to actually get a reading it had dropped 40 systolic and I was on my way out (of consiousness). I know I have pooling, have been told my blood is "concentrated", need to get the test for hypovolemia. Its just lots of testing, waiting, repeat rinse, repeat. I need to start living! My vandy appointment is not until late July. I have been waiting since Nov. I will stop complainig now. Here is a link to a funny video I made to cheer myself up based on my recent ER visit and others stories:

That is who I was referring to POTLUCK

Will do Naomi, I'm out of other "cause" options, something is wrong with my leg to cause the massive pooling on one side only. I think its a neurapathy of some kind, maybe - I always think I know what could be an answer and then I get none. Thanks.

Well its back to the drawing board. My catecholemines, both laying and standing (only for about a minute or two before I passed out) were totally normal, and kind of low. My epi was slightly high while laying, and dropped upon standing??? And my C1 emelayse was high/normal at 39, my IgE was almost exactly as elevated as it was a few months ago at 140. My WBCs are always slightly high, 12-20 range, I always feel sick/flu-ish with sore throat, and my passing out pre-syncope is worse than ever (I last about a minute before I start losing feeling/tingling in my arms and legs and get ligtheaded). My liver numbers are trending up. I have no idea what is going on. I thought for sure I was hyper POTS because of my massive surges, but I have not had anxiety/surge or POTS issues my whole life, just Raynauds and some hypoglycemia as a teen. We know there is massive pooling in my right leg, which is the leg that was affected most by my spinal surgery back in '99, which is when symtoms slowly started apprearing. Since then, it started with GI issues, then POTS/OI, then Gluten, then more severe hypogycemia and neurapathy symptoms, now the results of 15 months of inactivty (9 of which in hospital knocked up, PEs, DVTs, POTS, the works) - now being completely non functional and useless. Every time I feel like there may be an answer coming, labs come back normal. All I know is I feel better with IV fluids, Klonopin helps control the surges, and I'm miserable. I had to go to the ER on Monday for fluids and the pain in my abdomen, which I think is GB/liver related based on my tests, and all I can do is wait and wait and wait (indoors while it gets nice outside and I live right by the beach) for someone to figure this out. Oh and I can't digest raw veggies. I have been trying to eat healthier, I had stopped eating raw veg while pregnant because I had issues, and I guess I still am. Even cucumbers sat in my stomach and made me miserable for half the night - it was like I didn't digest them and they just hung out and decided to be jerks in my stomach. Just had to vent. I guess I'm going to look into autimmune stuff, since every woman in my family (moms side) has something autoimmune. I even tried to see a LLMD, and the only one in the area is not taking patinets and is backed up for years. I'm normally very upbeat and laugh a lot, but as the weather gets nicer (its 85 here today) and I feel worse and worse, its getting depressing. What I would give to take my kids to the beach! Or anywhere! Or just to leave the house. Thanks for listening. Input or ideas welcome, I'm stumped. Claire

My good POTS buddy who is not on this forum has rare Sjogrens with neuropathy that causes her POTS. All her blood work tests came back negative, until she finally had a salivary biopsy. I'm getting the same done (starting with blood work) to rule it out. I'm on a facebook group for people with POTS and Sjogrens that she started - gathering info as I'm exploring autoimmune causes for my POTS. PM me if you want info

How do they test if you do indeed have too much pressure in your head? I've wondered this as well, and me ears are a mess - not sure of the two are related. Any thoughts? Claire

Issie - you You may have mentioned this already Issie - but my brain is mush asfter a day in the ER, but what do you take to keep NE down? I'm trying to compat surges without upping my Klonopin. Thanks!

Thanks Jen, Bren, and Naomi It helps knowing I am not alone. It seems a lot of us were type A I was back in the ER today, and got some fluids - feel more hydrated, but still shaky, exhausted, and in pain (my right side is killing me, and my liver levels are up - I'm calling doc tomorrow). I hated coming home on a stretcher, and I guess its good my son no longer gets upset, he high fives me on the way back inside The med transport people think its cute (and so do I!). I hate being away from them and my poor husband has to do everything. I feel like I'm dragging us down, and depriving them all of the life they deserve. But I do see a new doc this month, so I am trying to keep up hope. Anyways, sorry for the whining, and thanks again for the support!

I'm thinking this may be part of the problem, thank you! My goal was 6 months, and we made it, and she's losing interest anyways and loving solid food so we have started weaning. I just woory about the fluid retention thing, but we'll see. And thanks Issie, I react very badly to lots of meds, thats why I want to try a targeted approach. I really dont want to take Midodrine. even though thats what they're pushing for, but my BP spikes so it worries me in terms of spiking too high.

I don't have any experience or suggestions with this - but it sounds miserable and I hope you find some relief.

Thanks all. Rama - my test came back that my sympathetic was insanely high and out of whack, and that my right foot was pooling. Thats all I've had done so far since my lame excuse for a TTT in 2003. I have autoimmune issues as well - Reynauds, gluten intolerance that is probably Celiac (not willing to eat it again to get offial DX). And every woman on my Moms side has an autoimmune disease. I get the POTS stuff, its the crazy fatigue and inabilty to tolerate activity that is really new to me. And exercise makes everything worse. Very frustrating. I broke down and bought full length compression hose and a portable ramp so I can maybe have hopes of leavibg the house without passing out on the way down the stairs, or using up all my energy going down on my butt and having to rest for hours, thus negating the trip:) I have heard Clonodine is good from a few with hyperPOTS, and I tolerated Toprol/Florinef combo before, so may try that again. I hated the side effects though, and my POTS was different back then (this was 5+ years ago). I'm wondering how the breastfeeding is either helping or hurting me as well - on one hand, I am retaining more fluids and my BP is good as long as my legs are up, but on the other, it is a major stressor on the body. And I thought based on literature that hyperPOTS is when your NE levels rise above 600 (forgot the units) along with BP elevating when upright? Am I wrong on that? Thanks again!

So I'm almost 100% sure I'm hyperPOTS. My heart rate skyrockets and my BP goes up when I sit up or stand, usually by 30 or more systolic, and I get my standing Cathecholemine/NE results back soon. But beyond that, I have terrible adrenal surges, and they have increased dramatically lately. I'm ending up a shaking mess with actual muscle spasms now from the smallest activities, and am on no meds besides a pretty low dose of Klonopin, Zantac, and Ibuprofen. I'm weaning my daughter from nursing so I can try some meds, because I havent left the darn house in over 15 months, and can't stand for more than 90 seconds without starting to pass out. I go see a new neuro (Dr. Chemali) who just moved here from Cleveland Clinic in about 10 days (not that I'm counting or anything), and I was curious what you hyperPOTS folks do for treatment. My biggest issues are the surges, massive crazy fatigue and exercise intolerance, and of course passing out when standing/not tolerating being upright well. My last round of tests showed off the charts pooling in my right leg. I think my bp goes up up up and then tanks and drops - can you have HyperPOTS and NCS/NMH? And the MCAD stuff - the random reactions to loads of triggers. I'm reseaching meds, so any personal things that have helped IN YOUR OPINION would be great! Thanks so much! Claire

That does help, thank you!!! I dont make money from my blog, its just an awareness tool, but I still dont like to post it without permission

I love Dr Raj's article, even mentions hyper pots.... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Best of luck!!! Claire

Naomi - I'm doing PT, but I crash so hard from it and take a fews days to recover I really cant do it while having to care for my baby (alone) for 10 hours. Its a frustrating situation. My parents are moving down in a few months, I hope things improve then, because I'll be able to push harder without fear of endangering my child. Thank you though

Me too Rama!!! I was quite the adenalin junkie (coincidence?), and now even the slightest stimulous sends me into adrenal overdrive - but I dont think its anxiety per say (at least mental based), I think its my ANS out of whack. And Puppylove, I think it's totally normal and great you are seeking treatment. In my opinion though, I think much of what you are feeling may be related to your ANS malfunctioning. Conside rreading and printing this letter to the edidor by Dr Blitshteyn (with 4 links to other related studies) to bring to your appoinments. Postural tachycardia syndrome and anxiety disorders Svetlana Blitshteyn, Clinical Assistant Professor of Neurology I also think that I, and others, have PTSD. We have rational fears of various health related things because we go through heck dealing with this illness. Its a wonder we aren't all in the psych ward, we are (and YOU ARE TOO!) a tough group of patients. I get very upset when I start to pass out because I'm scared, and I'm ok with that. I take medicine to help with both, Klonopin calms my adrenaline in general and helps with any mental anxiety without side effects for me. As a teen, in my opinion, another non-benzo may be a better start - but I tried them all and had terrible reactions. Anyways, stay strong and remember that it is not all in your head!!! The same system that causes panic attacks and anxiety is the system that is wacky in us!!! Claire

His study group specifically did not include patients with autonomic dysfunction, and in fact the study states that, “ All patients met the inclusion without exclusion criteria for POTS”. We emailed him to ask about this and this was the response: This definition was contained in his NIH grant application and is as follows: "[p]atients with postural hypotension secondary to autonomic neuropathy (diabetic, amyloid, familial), spinal cord lesions (syrinx, traumatic), or degenerative central nervous system disease (multiple-system atrophy, pure autonomic failure, Parkinson’s disease) will be excluded. Similarly, individuals with hypotension stemming from identifiable hypovolemia, dehydration, hemorrhage, vomiting, medications (a- or b-adrenergic antogonists, diuretics, venodilators), or endocrine abnormalities (Addison’s disease, hypothyroidism) will be excluded." These emails took place less than a month ago. Levine actually seems to want to seclassify POTS as being a small heart/deconditioned illness - and call everything else what causes it. I hope that makes sense. But even if he does so - he shoudl call it something scientific - not name it after a publicity stunt inducing cartoon character. I know POTSies with small hearts and they are offended by this name, as is understandable. I just can't believe Dr. Fagoros (About.com) is the first to speak up, and it took 2 years. How did this get published? The concuclusions are rediculous (in my opinion). Where are the other Mayo, Vandy, etc...reserachers that see all the various causes of POTS- and why dont they speak up?

Thanks Bananas! I do breathing eercises A LOT They help. I just want back out into the world. I want to take my baby to the park and got to my sons birthday party (I styped in, which was nice). I want to not need 5-7 days to recover from a 3 hours family visit. I struggle with being very type A and stuck in this body not able to go go go - and my mind is racing with ideas and fun stuff and all these dreams and goals and they are looking less and less attainable. I hate sounding whiney, woe is me - I just think I'm constantly mourning and not able to accept that this is my life now. I HAVE to get better. Oh - and I am painting again in small bursts. My first painting is an abstract peacock And I am painting these little peg people as well (I'm a super nerd), start wars and harry potter characters I say they are for my son, but not so much! They are totally for me.

Thanks all - I had a rough day caring for the baby and think it tipped me over the edge a bit. I appreciate the support

So tomorrow will mark 15 months indoors for me except for long hospital stays and doctor visits. I still start to pass out within 60-90 seconds of standing (apprently due to the extreme pooling in my right leg?). My local docs are all unable to see me for follow ups for weeks/months, and Vandi can't see me until late July. I'm trying to stay busy - of course caring for my 6 month old from a bed and reclined wheelchair on good days uses up most of my energy, but I've been writing a lot and doing activism stuff. I even started some small crafts that don't turn me into a lifeless shaking blob after 20 minutes. That is the big dofference for me - I am so deconditioned and exercise intolerant, that if I am even on the phone for more than 20 minutes my lungs hurt and I needs to recover. I am in bed 80-90% of the day. I'm just over it. Just had to vent. It's a bit overwhelming at times - I usually am an upbeat person and have coped well (n my opinion) but just waiting around for a doctor to do something to fix this is getting old. Especially since my baby is getting bigger and moving around and I'm having a harder time. On a good note, I got approved in under 30 days for SSD, I'm thinking about convincing my husband that I need more paid help with that money until my folks relocate down here to help. I can't do any type of PT really becasue I crash and can't care for the baby while my husband is gone, so I need an extra set of hands to start really getting reconditioned. This is why I'm so passionate about awareness/education/reserach, if there were more darn doctors and research centers, we all wouldnt have to wait so long for Vandy and Mayo. Its so frustrating! Ok, I'm done.

This all made me think of the Driscoll Theory as well (at www.prettyill.com). Connection between POTS, MCAD, EDS and increased fluid in the brain. How do they measure if your cranial fluid is high? Does anyone know? Sue - your logic in your original post is VERY intersting (in my opinion!), thanks for posting! Claire

Hi Naomi I was wondering what type of CFS specialist you see? A rheumy? A neuro? I want to get evaluated for this, as I have bone crushing debilotating fatigue, not sure if its my POTS or CFS, or if they overlap??? Very confusing. Thanks! Claire

I just wrote all about how another POTSy and I actually went nuts on ABC and the other POTSy was the one who spoke with Dr. Fagoros (who is super cool). Hope its ok to post this, but its a really interesting story. She spoke directly with Levine as well, who is very nice, but refuses to stop using the Grinch term. http://stoppotsvirginia.blogspot.com/2012/03/abc-news-aftermath-junk-reporting-and.html

"Harrison and his colleagues had previously shown that T cells are needed for the increase in blood pressure coming from high dietary salt or the hormone angiotensin, which regulates blood pressure, and continue to investigate the role of T cells in high blood pressure. Several studies in animals have suggested that medications now used to control blood pressure, such as angiotensin receptor blockers or ACE (angiotensin converting enzyme) inhibitors, may also be helpful in the reduction of stress and anxiety, Marvar says." http://www.sciencedaily.com/releases/2012/03/120305103203.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29 Thought I'd pass this on - I've been following your discussions on ACE type topics. Very interesting. -Claire

I was going to say the same thing. Coughing can cause that "bearing down" vasovagal movement that causes issues in many of us. Stay super hydrated and salt loaded, and maybe lay down right when you feel a coughing fit coming on? I get this when I laugh too much as well - its very annoying! Hope you feel better soon! PS - Musenex? May clear out the gunk and get rid of the cough quicker? Claire