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. 

Hi, I've learned a bit about this as my cardiologist tested me for MTHFR along with inflammatory markers and a genetic lipids panel. The lab that did my test was Health Diagnostics. MTHFR and it's various versions are being studied in cardiovascular disease, autoimmune, autism and depressive disorders as well as the long studied ob/gyn birth defects like spina bifida. I turned out to have the homozygous the version with elevated homocysteine. This form is the least able to convert folic acid into the active form the body uses.

Folic acid is the most common form of folate and is found in all our enriched foods and most b vitamin complex and is the inactive or synthetic form of folate. B vitamins are usually considered water soluble and pass through the body quickly, unless you have the mthfr defective version of the gene. Then your body can't get rid of it and it builds up. It also means you are not getting adequate amounts of folate(b9) the form the body uses, especially the brain. You can get it naturally if you eat enough foods that have it, like fruits and veggies.

The only form of L-methylfolate sold over the counter, (the form used in most research studies), is the Solgar Brand of it and is just under 1 gram. There are at least two prescription forms, one is:

Metanx it has L-methylfolate Calcium as Metafolin 3mg, Pyridoxal 5-phosphate 35mg, Methylcobalamin 2 mg, these are all active forms of b vitamins

Deplin is the other one and is a very high dose version of L-Methylfolate without the other active b's

L-methylfolate is the active form of folate and does not need to be converted by the defective/switched enzyme found in mthfr gene defects. The body can use it immediately. The high dose is used in depressive disorders, Metanx is used for neurological disorders and lower doses are used in pregnancy.

I am taking the solgar methylfoltate, and methyl b12 and will be adding in the other active b5, b6.

Since starting the supplements along with two autoimmune meds my inflammatory markers and lipid panel have corrected.

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

My son takes Deplin. He has been on it for awhile and also needs methyl-B 12. I did the 23 and me testing with him this last year and found out that he needs the methyl B 12 and its doners. If you are not getting the right form of B 12 this form of methylfolate may not be able to be absorbed by your body. My son also takes a methyl B-12 shot twice a week.

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 was just offered lexapro and am still deciding if I want to take it. I was told it helps balance the whole autonomic system, but most people seem to say it only helps with one thing like heart rate or blood pressure. I'm already taking other meds for those and don't want to take another one that is unnecessary. My main problem is dizziness, despite the fluids and cocktail of meds, I still can't be upright for more than 30-45 minutes. Has anyone had any luck with ssri's improving the whole picture, not just one or two symptoms?

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

I hate to eat in the morning, always have. The idea of eating within a few hours of waking up just grosses me out. I think maybe it is because my symptoms are so bad in the morning. Anyway, lately I've noticed that if I don't eat in the morning I feel terrible. Mainly nausea, extreme fatigue, and dizziness. Then I'll eat something and 30 minutes later I'm good to go. I've tested my blood glucose several times and my numbers are always normal. I've been on Midodrine for about 3 weeks and I feel much better while on it, but not unless I've eaten. Does anyone know why this could be happening? Do you think it is something I should be concerned about?

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!!

I'd say from all of my research it was just the Italian sausage itself. That is a big no-no on the list of things NOT to eat if your following a low histamine diet.

With the biggest Irony of them all I am a Hairstylist.

That of course requires me to stand from 11am-8pm 4 to 5 days a week. i only took off 4 weeks when I was first diagnosed and was very very ill. I have some how worked through all of the awful parts of my sickness and sometimes i look back and have know idea how I did it.

But I think ultimately standing all day has given me greater lower leg strength that has in turn given me not such a hard time with pooling and blood flow, so I think it was a blessing in disguise actually.

So I would say with out a doubt absolutely anything is possible given my situation because I was sick sick sick.

Hope this is some positive reinforcement to be stubborn and try and stay out and about because I think working and being out is important for all of us for eventual recovery. Remember this illness is about breaking the cycle of the bad feedback loop not succumbing to it.

take care

I can not find the thread that was here about it a couple days ago. Could you name it again or others and tell me how hard it was to cut is ALL out? I really would appreciate it. I know it helps all people but I bet it really helps us. thanks

Gluten Free helped my POTS IMMENSELY.

This morning I woke up and as usual was greeted with my typical tachycardia, nausea, drop in blood pressure, heart palpitations...but this morning I also felt like I wasn't getting enough oxygen when I was breathing. I've never had shortness of breath with the tachycardia. The only time I really get out of breath is going up the stairs or over exerting myself (like lifting a full laundry basket) and even then it goes away shortly after the exertion.

Today I felt like I couldn't catch my breath even though I was just laying down. When it didnt go away after 45 minutes I called my PCP's office and asked if I should be seen (Even though I knew I should). Of course my doctor was out of the office, she always is, and her nurse is a nightmare to deal with. She's rude, judgmental, doesn't have a clue what POTS is,and worst of all, she thinks I'm a hypochrondiac and doesn't take me seriously because I've been so sick lately that I call more often than I'm sure she thinks is necessary. She said, sorry, we have no appointments available, go to the ER. (After asking me twice if I was sure this wasn't just anxiety. I told her no, anxiety makes me hyperventilate, not short of breath, and I am not really anxious, I just woke up).

Went to the ER. Vital signs okay, pulse ox good. Blood tests normal, chest x-ray showed nothing concerning. ER doctor (WHO KNEW WHAT POTS IS AND specifically said he never assumes anything is anxiety off the bat, therefore I love him forever) thinks this could just be a fun new manifestation of the POTS. I've never had prolonged shortness of breath from my POTS. Does anyone else get shortness of breath for over 2 hours at a time with little to no exertion? It's very disconcerting.

This is one of my worse symptoms when I am very symptomatic. Actually it was my very first symptom that prompted me to go to the Doctors. I remember vividly saying, "It's like I have a toddler sitting on my chest...." I think the Doc thought I was kooky even then but that was my only way of describing it.

The things that have helped with this are: When I was on low dose Prozac this symptom literally went away in a matter of one day and was gone the entire time I was on it. Breathing is one of the main functions of the Autonomic Nervous System so it would make sense that this feature would go screwy as well as heart rate, blood pressure and temperature regulation.

Actually when I hear about people not having this symptom within our community it is very weird to me; as its so easy for even normal balanced nervous system people to feel like their hyperventilating, but I guess we are all so different!!

Also other things that have helped are: When I went on a low dose of Thyroid Meds (Armour Thyroid) this seemed to help as well. My Doc says it acts very similarly to a natural beta blocker if you are lacking enough Thyroid hormone, so you could always look into that.

I'm also Mast Cell diagnosed recently and notice if I take a Claritin/Zyrtec etc. it goes away pretty quickly but I have severe rebound Mast Cell activation so when i take these Antihistamines 20- 30minutes later I get symptoms from H%$L from breakthrough Mast Cell which i am very currently learning is a thing...

Also Probiotics seem to help if your a Mast Cell person because a lot of times whats happening is your Mast Cells are inflaming/going crazy in your stomach and Diaphragm which is putting pressure on your Lungs, so my Doc says. Also theres a crap ton of Mast Cells in our lungs so thats easily a factor all on its own.

Hope this helps!!!

same. My legs feel actual pain after I've shaved. Like the skin is burning and really tight. I also like never shave because of this! haha

Hello everyone,

I need your advice. It's been 5 years since POTS symptoms started. My GP thinks that I have anxiety and depression. I don't feel depressed, but he thinks otherwise. The only reason I have anxiety, because I can't find a specialist, who could effectively treat this disorder. I live in Ireland and I haven't found a doctor, who knows much about POTS.

I had been tested for lyme disease, which was negative,MRI of my head and neck, nothing significant there either. My GP prescribed me effexor ( venlafaxine), but after reading reviews from people who tried it, I'm absolutely terrified to even try it. He told me that I might experience nausea, shakiness, sweating and even tachycardia ( which I already have!), but if I could stick with this med all those negative side effects would go away and I would feel better.

Could anyone tell which anti anxiety medication worked best for them. Should I ask for SSRI instead of SNRI?

I have a 3 month old at home and don't want to try messing with these kind of meds and want to find the one with the least possible side effects.

Thank you.

To reply on this. These medicines are not as scary as they seem. I was also very nervous to try ssri's/snri's out. I mean, super nervous. The thing you have to remember is about 70% of the population (this is what my Doc says) is probably on some form of SSRI !!!! These people take this stuff mindlessly with out even giving it a second thought. But our type of personality is prone to over thinking and freaking ourselves out, rightfully so as we do react more to meds. But this is a double edge sword as it stops us from sometimes getting the help we need.

What I can note is that once starting them your symptoms do flare a bit for about two weeks as your nervous system gets back in balance but don't be afraid of this!!! If your expecting it then there is nothing to fear. Now everyone is different of course but I would say 1-3 weeks is about average if you look at the online information.

Even if you give yourself a timeline where you say, okay if by such and such date this isn't helping then just taper off and thats that.

Obviously I'm not a doctor so this is all just my personal advice from being through what you are going through.

Effexor is one of the more heavy duty AD's so if you are really nervous maybe he can try something super benign like Prozac or something very easy to get off of like the Lexapro/Wellbutrin combo which covers all of the same neurotransmitters that Effexor does.

Again, I am no Doc!!! I hope this information is helpful from my own personal experience.

If this gives you any peace of mind i have been on and off, Zoloft, Lexapro, Prozac, Effexor, Wellbutrin, Celexa, and am now back at Lexapro! haha.

Of all this information that you take with you I think the most important is if you are aware that the start-up symptoms WILL go away its so much easier to not be too freaked out by starting one of these types of meds.

I'm wishing you the best!

I'm an Mcad-er with spikes of high blood pressure. They still feel pretty awful and strangely i still feel like I'm going to pass out. I should say though every study I've read says beta blockers are awful for Mast Cell. But frankly I've read a lot of studies that didn't hold true so I would take this information with a grain of salt.

Some of my biggest symptoms are shortness of breath and chronic hives as well as heat intolerance and severe severe reactions when i haven't had anything to eat.

I tried Gastrocrom for a week and it messed with my sleep a ton and gave me awful palpitations. The thing is I think its one of those medicines that make it worse before it gets better so maybe i didn't give it enough time... I also ended up getting MRSA/staph infection after experimenting with it so maybe all those Mast Cells protecting my body are actually doing me some good even thought they are making me feel like crap!!!

-ashley

my TSH was 3.48 when i was put on thyroid meds. the new literature is saying anything over 3 is suspect of thyroid disease. I have found that Armour Thyroid has made a difference in some of my symptoms. Especially potsy shortness of breath and hypoglycemia.

hope this helps

I hope I can help on this topic as I have experiemented as well with most of the things you have and have been on Thyroid meds for the lasy year so here is my two cents on the matter I guess you could say.

So, the wondrous journey of Dysautonomia! I think we have all at some point tried almost every med you have listed except for I think a very small percentage of us that have experimented with Thyroid Meds so i will comment mostly on that in this reply.

I was sick sick sick. Couldn't even keep an even heart beat or a solid breath for that matter. When I initially went to the Docs they all kept asking me "Have you had your Thyroid checked? Have you had your Thyroid checked???" I mean, It was incessant. But each time I said yes I had it checked and was told it was fine and that was the end of that.

So then of course this is when I went on my carousel of meds; experimenting with everything, Lexapro, Prozac, Propanolol, Metoprolol, Vitamins, Magnesium, Zoloft, Effexor, you name it I've tried it.

So that brings me to the Thyroid. Well in the back of my mind i must say I was always thinking about those Thyroid numbers and then just so happens i stumbled across an article about people with Dysautonomia (They didn't call it this in the article but I recognized what it was from the symptom list) who had Thyroid disease. So of course I raced back to my labs that i had kept and googled my numbers, which my highest TSH had been 3.48.

Well then I find all this new info about how any TSH over 3.0 is suspect of Thyroid Disease, I thought i had cracked the case! I went to my Doc immediately, pleaded my case, showed her all of the information I had found and she was totally game to do a trial run of Synthroid to see how I reacted. Her words were, "its not going to kill you, that I know for sure. And if your body doesn't like it, we're going to know right away. " I should say that my symptoms had always been on the hyper-pots in of the spectrum so the Thyroid meds seemed counter-intuitive as they speed a persons body up more, so it was definitely a shot in the dark if it was going to work, or just make me worse.

So I started on a low dose of Synthroid and I think by the 5th day I remember vividly crying in the shower because it was the first time I had felt a moment of normalcy, in , what felt like forever. Now this didnt last but I had some glimmer of hope in this moment. So time passed and the Synthroid worked and didn't worked on various parts of my illness. Some symptoms it created were totally new. So after about 2 months of Synthroid I asked to be switched to Armour and that has been better in regards to not adding any new symptoms that were intolerable.

With Synthroid I started to have Menstrual cramps throughout the entire month. So obviously that wasn't good. On Armour my only symptom that I still struggle with (now 9 months on meds) is I can feel when the T3 kicks in and I don't love it because it feels like an adrenaline rush. This also messes with my emotions and mental state because its an up and down, but i was having that without the Thyroid meds on my own with my natural adrenaline surges. Also it is very hard to get the dose just right, when I'm on too much I feel like my hunger sensation is confused and I can eat a ton of food and still be hungry. So, It's trial and error still for me.

Now don't get excited as I am by no means healed with just the thyroid meds. i am still very much in this Dysautonomia boat. But it has helped with some of my symptoms pretty dramatically. My Cardiologist believes that it's just essentially throwing a rock in the bad feed-back loop that my body has created. He doesn't think that my body actually needs the Thyroid meds in the primary sense of a normal thyroid patient. He thinks its secondary. Now, my Dysautonmic specialist says differently and says that it would be more weird if I didn't have a thyroid problem and almost all Dysautonomic patients need some form of Thyroid therapy. My general practitioner also agrees. Her argument is if i didn't need it, Thyroid meds being a stimulant, my body would have totally freaked out by being stimulated more!

So long and short I have benefited. It has not been the cure all, but it has helped. The thing is you have to be super duper patient with it, starting at very low doses and be vigilant with the time you take it during the day. I was taking it in the morning but found that made me more symptomatic so i switched to the afternoon.

p.s. I'm not sure what your numbers are but thats a lot of Armour your on did you work your way up to that? just curious.

hope this is helpful!

ashley

Hi TigerBomb!

I live in the DC Metro Area and there is an Autonomic Specialist Center here in this area, Might be worth the Drive for you it sounds like. 2 hour drive no traffic?

I have been Diagnosed With EDS, MVP, Mast Cell, Dysautonomia. Mast Cell Dysautonomia can vary a bit from the regular POTS version so you really really need to see a specialist in my opinion. Just a basic Cardiologist wont even do from my experience. Of course if they have knowledge in this arena that is awesome, but most of the time they have basic knowledge about POTS, they know beta blockers are good and to drink tons of water, but you start to get into the Mast Cell stuff and it gets a bit hairy....so

Childrens Heart Institute

Dr. Hassan Abdallah

Reston, VA

This is the Center. They take adults and children. just say you have suspected Dysautonomia and your looking for a specialist. I mean they might even be able to refer you to one of there colleagues or affiliates closer as well.

They have like 10 other offices as well but this is the one that does all of the autonomic testing. I am no doctor but your symptoms are so similar to mine I'd hate to see you bounce around from doctor to doctor like I did with no results. This is a very unique sub-specialty and even now after all this time when I try and explain it to my General Doctor you can tell she's kind of like...um...hmm... okay.

She of course believes me completely but it' more that they are just now realizing the body is capable of dysfunction on these more sub-levels and its just so New!!

good luck hope you find someone that understands this!!

ashley