Clairefmartin

Thats what I'm worried about - I have mild anaphylaxis - throat gets very tights and swells a bit (plus itchy/tingly stuff) but have never closed. BUT STILL! I think I will wait until I see the MCAD guy next week and my nephrologist (who is also a pharmacologist!), and ask both. I've waited this long, another few days wont hurt! Thanks for the feedback and info LInda!

Hi Linda, I'm asssuming PN is partial neuropathy? Are they going to look for what is causing the OH? Hope you both are doing ok, I know this is a big adjustment and must be a shock to him (and you!), sending you hugs and love! Claire

Thanks Naomi! My QSART showed neuropathy, but my SFN biospy came back normal. I'm guessing I have patchy neuropathy, and actually there are 2 SFN tests, and he only tested for sensory, not autonomic, which I though was weird. Each lab is different, I have thought about requesting my slides be sent to another one (that I have heard is more reputable). My slides didn't show vasculitis or amyloid, but he still wants a chunk taken out of my stomach next week (again, weird). Hope you are well!

Hi everyone, haven't been on much - have been blogging like crazy and traveling around FINALLY getting testing, and just started some treatment. Some of you know I have been getting the run around since having mhy daughter a year ago, and have been mostly bed and home bound. I started IV fluids a few weeks ago, its been great. I was officially diagnosed with HyperPOTS based on my ANS testing, but have mild neuropathy of unknown origin. I have to get more biopsies next week for Sjogrens and Amayloid, and be worked up for Metabolic Syndrome (my ALP and Triglycerides are high). They also are going to do a serum catecholemine draw to check the hyperPOTS thing, because my BP bottoms out half the time, and spikes the other half. Actually its probably not half and half - but it definitely drops sometimes. I am seeing an MCAD doc next week as well, as that is still highly suspect as well, especially after the hyperPOTS results, and have a medicine question. I was given Propranolol, and I'm really nervous about taking it. I did take Toprol XL as recently as 2011 with no allergic reaction to it, it just tanked my BP so it was discontinued. I'm worried about both anaphylaxis issues and the BP issues. Has anyone with MCA issues had a reaction to this BB? And for anyone that may have taken it that has BP that tends to be low (and my resting HR runs usually in the 70-80 range laying down), has this affected you in any way or helped? Oh - and I supposedly have "Chronic paroxysmal hemicrania (CPH)" causing my issues with my right side of my face. Its an autonomic headache dx I had no clue existed. http://emedicine.medscape.com/article/1142296-overview#a0101 Thanks! I have such medicine phobias! I'm supposed to try it tomorrow, but don't want to of course.

I did! Actually my first pregnancy made my POTS completely disappear, literally overnight, was on no meds, and symotoms did not return until I stopped nursing (second pregnancy was complete opposit and almost killed me, still recovering). I also in the past have had the ups and downs, waxing and waning symptoms. All these experts say most peopel grow out of it, but there are no long term studies about this. I think it applies to the teen population and post viral. I do know a bunch of folks who treated their underlying POTS cause and were "cured" of their POTS. Things like IVIG for an autoimmune cause, Lyme treatment, and other treatable causes included. Then there is the astonaut Texan group that magically is cured by exercise, but they had cardiac atrophy to begin with, so I guess fixing the cardiac atrophy by working out like crazy and enlarging the heart "cured" them. I really hope we seem more solid numbers on this in the future in the literature!

I found you on Dinet! Linda i hope you get some answers. I actually was told that they have redefined POTS and you cannot have POTS and OH. My neuro explained it in terms of a sudden drop vs a slower drop. He said that if BP drops slowly over time during a TTT, the OH is usually something besides POTS. But POTS can occur along with NMS or just plain cause your BP to tank and you to pass out. The cut off is 20 systolic. Do you know what his numbers were start to finish? Talk to you soon!!! xoxoxo

I have found if I get a slower drip rate it "stays in longer" so I am now getting 1.5 L at home at a 100-150/hour rate. I feel horrible during the infusion, but much better a few hours after or the next day, and it has allowed me to regain some function. Its just not convenient to be hooked up to an IV for 10 hours, but they have a neat little backpack thing with the pump, and its not like I'm very mobile yet, so for now it works. I have talked with others and my new awesome nephrologist about why IVs work so much better, and the GI absorption in POTS/Dysautonomia seems to be bad in general (would love to see a study about that!), and bypassing the GI tract allow direct access (almost) to the kidneys in terms of the saline. Anyways, good luck with your experiment, and be careful! I'm interested to know what happens.

I'm so sorry to hear this!!! The hot weather/sun doesn't seem to do good things for POTS. Blockage makes me think clots - please keep an eye on that and if you feel any pain go get seen immediately in my opinion. Do you have redness and pain anywhere, and is it both legs? If its both legs without redness and pain it is probably not a clot http://www.medicinenet.com/blood_clots/page5.htm#what_are_the_symptoms_of_blood_clots. Hoping things get better and you enjoy the beach a bit!! xoxo Claire

You basically need to be in the middle of an attack or within a half hour to and hour of one for tryptase to be levated in MCAS (according to the new literature). If you can wait to get the blood drawn while having an attack (easier said than done), that would probably be best in my opinion. There are a bunch of other blood tests they can do, if your doc is open to it, this is a great publication by Dr. Afrin to print and have with you: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/ Best of luck! Claire

My BP is all over the map as well. Sometime is tanks immediately upon standing, sometimes it shoots up high. My heart rate always shoots up upton standing, but slowly comes back down sometimes. Nothing is predictable, its very annoying! I'm waiting on my first round of ANS testing results to maybe find out why. NMPotsie your mention of the Barorflex issue is intersting, I'm writing it down Best of luck to all.

Not sure if this has been shared - but it came in my weekly Pubmed roundup as new - even though it is dated from March. I have been reading the threads on here about all our wacky ear issues, and thought this was interesting. http://www.ncbi.nlm.nih.gov/pubmed/22205233 Exp Brain Res. 2012 Mar;217(2):251-9. Epub 2011 Dec 29. Evidence for vestibular dysfunction in orthostatic hypotension. I'm trying to get the full copy. xoxox Claire

Weird - I hopped on Facebook and someone posted this about PQQ: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804159/?tool=pubmed

You can have dysautonomia with tachycardia and not POTS - the POTS criteria just means 30 beats per minute when you stand within 10 minutes. They sometimes also diagnose "Orthostatic Intolerance" if you don't quite meet the criteria. Either way, POTS and OI are both caused by something - and if your QSART was abnormal that suggests (according to the literature, I'm not a doctor or trying to diagnose you) neuropathy of some kind. The "fun" thing with neuropathy is that it's like POTS - you have to find out what is attacking your nerves. I wrote a big long blog post about it here with a list of possible causes and links to papers on them. I hope you find a doctor that will dig deeper - the abnormal sweating is a big red flag for neuropathy. Best of luck!

I'm sorry to hear you have Mito - but glad you have another piece in the puzzle. I have heard my Mito friends talk about the Mito cocktail as well, and quite a few have benefited from it - so hopefully you will too! I read at last count there were 1500 different Mito's, and most hard to find, so it is great you got some answers. Sending hugs!

I have heard mixed reviews. It is not a cure by any means, but many people seem to benfit from it - learning to control your breathing and temperature helps with the ANS symptoms for some. The people I have heard from love the doctor and staff their, but I think the cost and travel expenses are a factor as well - and you can find local biofeedback in many areas closer to home. Best of luck!

Thank you Arizona Girl! I am just seeing this. I will look it up for sure!

Sounds like you need to get to a specialized center ASAP (in my opinion), like Cleveland or Mayo or Vanderbilt. Somewhere that has multiple doctors across specialties that can work together to dx you. I'd say skip Dr. Grubb for now, he is WONDERFUL, but he is one man and his wait list is long. Have they looked into MIto for you? Mito causes issues in so many areas, its just the first thing I thought of. Either way, I'm sorry you are dealing with so much - and I hope you get answers!

Thank you Arizona Girl - that is a lot for anyone to deal with! I hear this from lots of people with AI issues, they tend to cluster, and cross over, and change over time. I'm completely antibody negative, the only thing that shows up for me is high IgE and IgG, and mildly high C1. I have been reading up on CVID, have not heard of UCTD, but will look it up. Thanks again - and I'm glad you found treatments that help! I know quite a few people with AI/POTS and with IVIG their POTS symptoms all but dissapear. I'm hoping something shows up that can be treated with it, because it seems to work so well for so many.

I FINALLY recovered my log in and password! My old laptop had died, and all my saved info along with it. Just wanted to say hello, and up date you all quickly. I'm still working towards a more concrete DX/cause of my POTS, but Dr. Chemail is pretty positive I have Autonomic Neuropathy, definitely POTS (duh), transient OH, and something autoimmune causing the neuropathy. He thinks Sjogrens is most likely. I also am looking at MCAD, still having random crazy reactions to things, but that could be autoimmune (or both). My Mom's doctor out of the blue told her she needs to be tested for Sjogrens (I've been telling her for years!), and my aunt is on her way to see the MCAD specailists in Boston. So either or both may be a possibility. My lip biopsy is in a few weeks, and the small fiber neuropathy biopsies are end of July. Then all the autonomic test equipment arrives and I'm slated for everything in the early fall . I hope everyone is ok, and have missed being on here! I have tried to log in so many times its rediculous, was stuck on my phone for a while, then even with a new laptop was unable. Glad to be back. Claire

Thanks for checking on that for me Maiysa! I had a random MCAS question - can you flush without showing severe flushing? I have many episodes where it actually feel like I am burning from the inside out on my face, and usually ears, but I look in the mirror and may be a bit pink, but not the crazy red I see many get in pictures of MCAS. This may be hormonal I'm thinking, and not MCAS? SO confusing. Thanks.

This was my thought. I was just diagnosed with chronic EBV, and waiting on my Vitamin D results. I have been tested (via non-contrast MRI) so many times for MS, and always negative, but there is so much overlap! Anyways, glad people are trying to put the pieces together.

I had a SUDO SCAN! Not many doctors do it, its geared towrds dabetic neuropathy, and I'd humbly suggest that you see a nuero that will do some of the other tests to dig deaper and see whats going on with your neuropathy. Here's a link to info on it: http://www.impeto-medical.com/sudoscan-plus/the-sudoscan-plus-principle/ Zoloft is known to put weight on people, that is no fun. I'm having so many more issues now that I'm overweight as well. I hope you find a solution for the Zoloft, hopefully others will chime in.

This is why the grinch stuff is so damaging, i'm hearing it from patients left and right. So I would ignore that part. I'd suggest seeing a neurologist who knows about dysautonomia if possible, and the endocrine doc. YOu are entitled to a second opinion, especially regarding the Zoloft. I'm in the same boat for different reasons - was on forced bed rest becaise of a crazy high risk pregnancy for 9 months, and I am beyond deconditioned (and 60+ pound heavier) and now have possible metabolic syndrome (blood sugar is all over the pace, liver numbers wacky, triglycerides high, etc...), but there is no way for me to work out when I start to pass out after 2 minutes. How did they determine neuropathy? Did they biospy you or do an EMG (the shock test?) or any others? There is a good run down here: http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/evaluation/. Best of luck! Glad you are getting some answers! Claire

Here it is, wish I could afford to buy the entire thing! http://www.sciencedirect.com/science/article/pii/S1568997212000845 Mentions interesting areas of research I have seen discussed on here before. Claire

Someone started a group on facebook where you can look up others in your state with Dysautonomia, here is the link: https://www.facebook.com/groups/dysautofriendfinder/ I found a bunch of people locally that I had no clue existed! Thought I would share. xoxo Claire