Neshema1

My vitamin d deficiency was so severe it was untraceable & caused bone density & parathyroid problems for years. I. Was on rx D2, 50,000 units 2 x week plus calcium and D. I did some research & decided to try D3 from the health food store, 5000 units daily plus calcium & magnesium. guess what!?!? It worked. Finally, my D and parathyroid are perfect! You need to buy a really high quality brand. My endocrinologist was very supportive & happy for me. One issue improved!

I love clonodine pills. Patches make me very tired during the day. I don't like BBs. I have hyper-POTS and severe hypovolemia and autoimmune. Ugh!

I have sjogrens syndrome. I've been on a gluten free diet and it helped GI issues as a child but did nothing for me as an adult. Realize a true gluten free diet is very difficul. you need to avoid all products even made in kirchens with other products containing gluten. There are tests for celiac disease that are extremely accurate. Despite doctor after doctor thinking I have gluten intolerance or celiac, no tests ever show it. Right now, I'm just lucky to find something I can eat. Sjogren's patients have a high rate of autonomic problems, something like 50%.

I've been on it for a long time with no side effects. In fact, I've decided it's not effective at all. I tend to be very sensitive to medications but cannot find treatment that helps me enough. I think the best thing is saline IVs but they are not very practical. It probably deipends on whether the primary problem (autoimmune, EDS, norepinephrine transport, hypovolemia, etc) can be determined. Mestonn is an acetylcholinesterase inhibitor (the enzyme that breaks down acetylcholine) and is particularly effective for problems involving the parasympathetic nervous system. If your problem is related to issues that involve processes that occur following acetylcholine breakdown, I doubt mestonin will help, but I'm not an expert.

Thanks for support. I'm having seizures today. Bp all over map,

I showed him the blurb from dinet & he said didn't mean anything cuz from a support group site. I may have missed it, bur couldn't find who wrote it ( eg one of the pots docs or a direct citation supporting use of klonopin with hyperandernergic pots. As for headaches, I meant what other drugs do ppl get for headaches & from what docs do u get controlled substances? I only can tolerate fioricet or phrenilin (fioricet without caffeine). I never over-used any substances & don't drink. But I'm ready to bite the bullet rather than depend on anyone for controlled substance. Seems there have to be too many cooks in kitchen cuz no one doc feels qualified to handle a complex case. So, although my EPs are great, I'm frustrTed that I have docs of several specialties & most of team communicates or they get booted, but still my gi doc, for example, really great & helped me, but not autonomic specialist & sometimes puts me thru unnecessary tests to cover her u know what. So, when it comes to treatment & ur complicated, their licensure means more than my health...and they won't read journals. We gotta educate them, as u all know. So, I'm just considering going off any controlled substances, regardless if they help or not. Cuz I'm still really doing poorly (well I'll be really even worse.. There's a reason I went on meds in first place), because I'm in one of those stages where I'm tired of dealing with docs. Maybe my neurotransmitters will adjust & I'll just end up where I am. It seems like the only things that keep working are IVs. Clonodine, & Domperidome (well the last one just prevents total disaster). By the way, another potsy told me miralax is made out of antifreeze (as in for ur car). No way!?!? If that's true, no wonder we r sick.. I hate to think of what's in my other meds! I'm so close to getting off my meds, even though I'm normally the type who will fight & go to pluto for help. I'm sick of it. I'm tired of being so severe my docs keep thinking something else is going on. I'm tired of asking for help & feeling lucky to take a shower on occasion. Ok, I'm just in a phase cuz my neurotrabsmitters are in total state of confusion. Well, despite klonopin withdrawal I finally slept & couldn't sit up all day. Thank goodness for iPhones! Going back to sleep. Pleasant nightmares! I don't recommend abruptly stopping or cutting dose in half if u take benzos. Too bad. They really help hyper pots. Not sure what I'll do.

Hi Naomi No clue. Maybe doc had problem with another patient. Regardless, i can't find a citation on use of benzodiazeprines withe hyper piots..I need a reputable journal citation. Thanks!

Hi friends- Does anyone have a journal (preferable) or book citation on value of using klonopin or benzodiazeprines especially for hyperandernergic pots? My NE levels are over 1600 & my doc suddenly outta nowhere decides to cut my dose in half. No taper. I was just in Hosp for pots complications, although docs think might be more than pots even, its like msa with high Ne & severe tachy. What is progressive pots??? Anyway, my whole life is really affected. Not my bag, but klonopin helps me so much, especially at night. Ok I'm one of the seizure ppl here, & my &$%# doc (no one in dysautonomia world) suddenly decides to lower dose.,he can check my drug records ; I NEVER overused anything.,I don't drink. Im super compliant. So kind of weird. Asked me if HE's been prescribing it. I'd think I'd have a chart. My dysautonomia docs are fine with it but i feel strange asking EPs fir klonopin or headache meds, & so I am wOndering if u use these meds, what kind of doc. Do u have an autjomix doc that u get everything from or do u have a team? I can't find primary care doc who doesn't have a panic attack upon seeing my records! Please advise me. Thanks so much!

Does anyone know a citation that discusses ""progressive POTS" or pandysautonomia with all subtypes of POTS, crazy high NE, severe hypovolemia, and cns involvement? From what Ive read PAF and MSA can overlap with POTS but seems PAF and MSA don't have the severe tachy component? Right? MY ANS seems to be shutting down system after system but I still have bad tachy, among a huge list of every imaginable related issue. Dont have pheo or the typical differential dxs. Do have hx of sjogrens & raynauds. My speech is awful, my reflexes almost absent, convulsive syncope, neurogenic bladder, gastroparesis, severely low sodium. WE have tried everything. Getting worse. Docs think its POTS with MSA and PAF, but could be mitochondrial disease - have referral for workup, but got stuck on a wild goose chase at one of the big centers. They didnt find stuff they expected, but found other stuff consistent with dysautonomia or mito...but worse and involving more systems than other POTS patients. So, anyone know about tachy with MSA and PAF or POTS turning into PAF and MSA? Or whatever info that might help me? Please help. I searched medical library. Can't find anything research based. Cant even find a physiological/theoretical clear explanation. I am really in need of something more definitive before I die. Not into giving up or getting worse. WIll go anywhere. have great docs doing all they can. I just have a very complicated case. Can you have tachy with MSA or PAF? PLEASE respond if you have any info. THX!

please see other post

I cannot say enough about Grubb/Karabin. Been a patient of their for over 4 years. His wife is very ill. Bev is as good as any POTS doc. I see them both. I love them. They work with my local docs too. I really am lucky to be their patient, as much as I hate having to be. When I met Dr. Grubb, I couldnt believe that man was for real. Bev is amazing. As my local EP says, who himself is very famous, "any time with Grubb/Karabin is worth it!" So true. Get appt and call to see if someone cancels. DO it. Ive been to Mayo and Vandy. Grubb is best. My friend goes to Suarez in Toledo (trained by Grubb, she said), and she likes him very much, FYI. Realize Grubb/Karabin are helping the dysautonomia world. SO, u must keep up with them once you are in. They make u feel like their only patient but so many others feel same. So, there is a reason we are called patients! But, once u see him, he will spend (or BEV) tons of time with u and explain stuff and they are up on latest treatments and have more empathy than u can imagine. You will get treatment and feel validated. Just have a local doc to take care of stuff when they are hard to reach. They WILL take care of you. I am sure someone might disagree. But, that has been my experience. I just love them and am relieved to be their patient. Hope that helps.

ps, just about every detail u described about your mom's behavior describes mine. You have courage to post. I, for one, am glad u did. And, i am guessing your social skills are better than u think. I am guessing ur self esteem has been destroyed by your mom. I though my mom was the ONE person I could turn to. I now see she had longstanding issues. It took a long time to realize it. And she hates when I cry. I finally remembered she would pull my hair as a child if i cried. I forgot and thought i came from the totally functional family, other than my older brother. My dad, whom I adore, has dementia. But, he was always very passive when it came to standing up to her. She announced she was done taking care of me all my life. Funny, since I came from an affluent family and started paying my own way in high school and ever since never took at dime from them. Regardless, my very existence is a problem now. I hardly talk. I try to be invisible around her. Anyway, u talked of being stuck. I hear ya, even tho I have a house. It's in a place where I can get no care. I am gonna sell it. Then, u can come stay with me. I dont know u, but I know your pain all too well. Ur not as stuck as it seems. I finally realized it. U dont need a group home, though i plan to build an assisted living apt complex for dysautonomia patients with all we need through grants, using all my skills i learned as a prof if I can live long enough and just even sit up more often. maybe you will help me. Adversity can lead u to great things. Don't give up. I say this on a night i cant sleep cuz my own mom upset me. I usually cant wake up. She upset me, but tomorrow, I will wake up and figure things out. Ill stay here a month max, to get enough of a tune up to go sell my house. But, Im about to leave and stay at my friend's. Im lucky to have some true friends. Hate to burden them, but hard to accept help and unconditional love since "normal" has become constant punishment over who knows what, requiring my unconditional love for my protector/abuser. it's confusing, no doubt. Im finally getting I have a choice and I will live without her - somehow. So will u. Maybe things are better for u now. If so, I am glad for you. You figured out how to manage a narcissist, it seems, or u left or u became invisible, or somehow found a way to communicate. I'd love to know if u did, cuz u said she doesnt want to help herself, and that said, tells me her issues likely have not improved. Her issues aren't yours. You've got enough to deal with, dont you? (((HUGS))) please update me. thx. Ur braver than u think.

OMG, I SO GET this. My mom rejected me in late 40s cuz I was no longer the star professor but a sick nobody. She invited me home near my docs and went bonkers (realized after being gone and independent so many years, it was always my job to make her happy, which i couldn't). Oddly, Im a psychologist, but kind of turned statistician/researcher, but good diagnostician. Her docs agreed with my dx of borderline personality (totally impossible to deal with). She tried to commit suicide 4 times this past year (all to send a message to her family she was done taking care of others, after living as a kept woman herself, never helping anyone). SHe always saved her enough meds and hid them for her next attempt. Her last attempt, she almost succeeded. Was in a coma for over a month with severe liver failure. We thought she was cooked. But, she survived and with the brain damage only became worse. She blamed me each time, although she admits to being delusional. And, the last time I had left her place and all my docs to go back to my home in a prestigious college town with no medical school and suffered severe deterioration. She blamed me even when i slept thru her 3rd attempt, including the paramedics, and was out of state her 4th (most recent attempt).It was so awful to be rejected by my mom...worse than anything, losing health, not being able to work (my identity), being isolated. Then one day, I realized (after much sorrow), I didnt NEED her (well, i kind of did need someone to rescue me out of there) but I WANTED her to be the mom I wanted, which she just couldnt ever be. It really empowered me, and I know it sounds cliche'. I had to realize myself all I did before POTS. My POTS is extremely severe and seems to have crossed into the MSA, PAF, mitochondrial something zone, according to the guru doc. So, maybe I will die sooner than expected, but after seeing her, I am the opposite of suicidal and realize I am an adult and dont have to take her &*^%! Sure, it's disappointing. Sure, I need help. But, with it comes punishment and I am sure it is bad for my health. I am currently at her house again. She is about the only person who can make me cry and I mean sob. I thought I was over it, but as my own mom has said, "there is nothing like a mom." It is such a source of despair,, but what can I do? All I can do is back off and try to avoid her pathology. Any mom who rejects or is unkind to her own sick child (even as an adult) is disordered, when the child has tried everything to be the model daughter. I'm financially independent even on disability, I was internationally known, and I admit most say I am pretty cute, even for an old lady now. But, I will never be a trophy girl now that I am a sick chick and I'll never be bragging material for my mom's narcissism. Im a simple person now and learning who I am beyond who she wanted me to be. I thought it would work staying at her house part time and staying with friends the rest, but she is so unpredictable and such a drama queen, I just cant deal with it with my norepinephrine levels. So, I was making progress managing her, but tonight realized she can melt down at any moment. I can't take it. I'll probably leave and go to my friends' until i can go back to my house and sell it and get my own place. I am pretty sick and feel stuck,but I am slowly figuring out the freedom of being an adult without a mom. I feel for anyone who has suffered this unspeakable pain, but once I heard my latest prognosis, I just dont have time to be miserable. I am finally letting friends help, although many of my old friends disappeared (new ones, deeper ones, showed up) and some old friends proved they were my true friends. I have to let them see me sick. It's hard. It's better to be single in a couples' world than to be with someone who is wrong. And, when we are single with POTS with unsupportive parents or siblings, it's like being an orphan. But, after coming back (and some of it improving but not to acceptable levels), I realize she is not the one to seek emotional support from or to think will ever rescue me. Hey, the best docs in the world are on my team and they have tried so hard for me, but they can't rescue me either. It is was it is. I am not sure what it is cuz it's way beyond any pots patient any doc has seen, but I'll find the will to keep up the fight until it's over. My mom is not the one who will decide that. Get some space, is my advice (take it or leave it) when u r ready, and embrace your own fortitude, knowing each time she hurts u, u will have a setback emotionally and physically. But, cut yourself slack. It's perfectly reasonable to grieve over a hurtful mother. It's worse when we finally figure out how bad she is or has gotten, once we are adults and facing a huge life transition and NEED help, but don't need her. Wants vs. needs. She wont be the one to give you want u need. she just can't, and be glad if u don't get her, u don't want to be like her, as much as u may have loved her. Love isnt supposed to hurt. I dont know about u, but I'd classify a mother who abandons a sick daughter as abusive, not just mentally ill. Plenty of mentally ill people are not abusive, even if it's emotional abuse. Write to me anytime. Same name at yahoo. I rarely post. But, i never saw someone write something like this. I'll support u, while Im alive. Hugs, Neshema1 '

Rachel I so hear u. I'd write more, but I am too tired, after sleeping 3 days. I have severely low blood volume, dehydration, high NE, untraceable D without huge rx supplementation. If i sit 3 hrs in the recliner, it's a good day. I have had a lot of cns symptoms, but no clear explanation. I kind of wonder if the blood volume and dehydration cause it. Mito is under consideration. Did u see the mito doc? did I miss what makes you improve? Did Beverly find something that worked for you? Reen-i have similar autoimmune issues. I believe they can contribute to cns issues. So, it's gonna pass? When? How? I'll try the "hope" one again.