adigitalashley57

Wondering what all the fellow POTS/EDS/MCAS are doing currently for the Mast Cell portion of your diagnosis. I know many people do multiple different Antihistamines etc. Curious of everyone’s experience with double dosing and things like that.

Wow Interesting! Yes I have to say i feel like 1,000 times better on it. The first couple of days it ramped me up, feeling a bit hyper and then i kind of felt nothing. I would say it was on the month mark of taking it that i really notice a huge huge difference. I am on Deplin 15mg. So I'm on the highest of everything. I'm contemplating attempting to go off my other medications in maybe a month or two to see if its possible to be just on the Deplin. I have EDS, Mitral Valve Prolapse with regurgitation, moderate to severe Mast Cell issues and Depression and Anxiety if I am not on an Antidepressant. Let me know how your time goes with the Solgar brand, I'd be very curious

tell me more about the B-12? i do know its important but it seems to me that most B-12's come with folic acid in them and With the Deplin it is not recommended to take Folic Acid as it can block the version of Folic Acid that Deplin is. This is just what i was told. I'm am no Doctor of course but it was recommended to avoid.

So I've just Started using Deplin, it's a medical food containing L-methylfolate. It's prescription only and the gist is that its the precursor to Folic Acid. Apparently Like some ridiculously high number of people do not convert Folic Acid into an available nutrient for the body. And as we know the lack of Folic Acid can wreak Havoc on the Nervous System so my Doc thought we should give it a shot. http://www.deplin.com Check it out peeps. My only concern is that Im also on Wellbutrin and Lexapro right now so I'm concerned I'm not getting a fair judge of what its actually doing. I'm contemplating weaning off my meds and just staying on the Deplin to see what its really made of. It's just a curious thing that most of the stuff that works for our illness falls under the "anxiety/Depression" umbrella of medications for some odd reason and this is the natural form of a solution to those illness's. Let me know if anyone else starts this or has used it i am very curious!!!!!

i had immense luck with it helping the whole picture. patience is extremely key though as almost always it gets worse before it gets better. I'm no doctor but that has been the case for me every time and many people here on the forum. and also your nerves might be racked for a week or two as It tends to ramp up adrenaline the first couple weeks then it settles down, again from my own perspective. Plan accordingly if you have something coming up. I think most people don't give it enough time to see results. On a normal person taking SSRI's, they say results don't start occurring until at least 8 weeks. So one would think with us it would be even longer… i hope this is helpful. Again this is just my personal experience!!

Hello! I am also mostly cured. Its kind of weird to say actually. My being cured is very clearly related to medication. When i'm not on meds I become symptomatic again. Atleast that has been the case the last few times i have tried. So i am happily on 10mg of Lexapro and 100Mg SR of Wellbutrin. the Wellbutrin helps to keep my blood reassure up and stable and the Lexapro does the rest. The odd thing is the SSRi's for me almost always create a little bit of their own Dysautonomia but its so very mild i'd really rather deal with that than the extreme shifts my body does on its own not on anything. It keeps it much more predictable. I first became diagnosed in 2009-2010 so I've been dealing with this for a while now so if anyone has questions of meds I've tried and other things feel free to ask, hopefully i can help!!! And also i have been completely Gluten Free since about 2010 and that has made all of the difference in the world! I had pretty severe Neuropathic pain and weird tingling and numbness it random spots until i went on a GF diet and went on meds. I think that damage was done in terms of the nerve stuff so I'm sure the GF diet has helped a lot but its the combo of the two that really was a lifesaver for me. keep this thread relevant i know it has helped me to read stories like this!!

Hello! I am also in annapolis area and hope that this all goes well for you! Keep us posted!

near there! have you looked into going to the children's heart institute? they have a whole dysautonomia specialist group. check them out! they also have a group that i believe meets every other month to discuss the latest findings… could be very useful. Also Dr. Marshall, a cardiologist at CardioCare is also the best! they are in D.C. I know you weren't specifically asking for Docs but sometimes new Docs can lead to meeting many more people with POTS in the area:)

ssri's have always made my breathing symptoms better! This is also one of my worst symptoms:( Beta blockers are notrious for making the breathing symptoms worse so you might want to investigate that... I'm no doc of course, just some info from my experience!

I'm very interested in the fact that it almost seems like the most successful and the least successful are almost very closely the same things in each poll. I mean not exactly but relatively close. It's interesting to me that more people haven't had luck with antidepressants as all the specialists I have gone to tout them as their first line of defense. This interests me. Is it that people aren't giving it enough time so that the start-up side effects can wear off? Because essentially the science behind ssri's and snri's for this disorder are very sound. I'd be very curious to hear more on this topic.

This is 100% one of my worst symptoms. I also suffer from cold intolerance as well if I'm not on an SSRI. I will say that the heat intolerance is a tiny tiny bit better on the SSRI medication but i still suffer from it. I am no doctor but I think the idea is that the way the SSRI regulates your autonomic nervous system, with that, you get a little bit more temperature regulation as well becuase that is one of the key jobs of your autonomic nervous system- body temperature regulation. So its not a perfect solution but it could be something worth trying if you are super in the weeds with this. Again I am no Doc, but this has helped me so i talk only from experience.

hands down my worst symptom is chest tightness/ shortness of breath. I aways explained it as if there was a toddler sitting on my chest. Second to that is my heat intolerance. I have all the other stuff too but i sometimes think i would take the other stuff any day over the shortness of breath and not being able to go out in the summer!!

I do this ALL the time. especially anytime I'm trying to concentrate on reading something. I've done it ever since I was little though. I more think it's a coping mechanism for our "type" not necessarily something physically wrong with the inner ear. But I did have tubes in my ears when I was little so who knows. But I think its more along the lines of people with ADD and playing Video games and i guess on the way way extreme spectrum autistic's and over-stimulation. Not saying its exactly like that of course but I think it's more in that ballpark. just a thought.

Hi all!! So i will throw this question out there into the deep void and will be very curious of everyone's responses. As I am sure most of you know Celexa and Lexapro were both given a new warning in 2011 that at high doses above 40mg. they increased the chances of Prolonged QT interval Syndrome. So I am on 20mg of Celexa as of now and was on 10mg of it for 7months of last year and I just cant shake this feeling that I am not comfortable with taking the 20mg. Again I am no where near the dose that produced symptoms in trials. But saying that I still don't know where my comfort level is with this medicine.I have tried to do some google searches on the matter and only find the news articles related to the warning, not anything directly correlated to heart/valve abnormalities and the risks with taking these meds. It works very well for me in controlling my Dysautonomia. But saying that I do have Mild/moderate Mitral valve Prolapse with regurgitation. So i am having quite the quandary.... I would be very very curious of others opinions on this specific matter and whether any one else has been through this as well. I'm very curious of who is still taking this medicine with the new heart related warnings or have others gone off of it or decreased their dose?? I think its great to shed light on these little medicine questions as maybe they might not relate to most in the general public but might have a HUGE effect on us and our community. And its really important for us to stay current on information like this!! xo ashley

this is my WORST symptom. I am constantly having to be prepared for when and where i will get my next meal... And also I need to eat at very specific times. I cant just go an hour past when i Normally eat lunch because then my heart starts racing i start getting dizzy and faint and flush and it is NO GOOD!!!! Let me tell you this part of the illness ***** big time. I mean its like being a diabetic to be honest as I have to pack very well balanced snacks and meals with us where ever we go. I have been keeping track of my blood sugar with a monitor and it actually seems to swing high more than low. My blood sugar readings are more in the 90's without eating and then when i eat I do the 1-2 hour testing and its usually between 117-133ish. The problem is these readings aren't high enough for doctors to worry about.... Hope you find some relief!!