MamaTrain

Tommy-

I tried Effexor before and it made me more anxious. I was grinding my teeth, white knuckling the steering wheel, had facial tremors and was waking up in the middle of the night with a racing heart. My doc took me off of it after a few months. Withdrawl from that is not so fun either. I think it's because Effexor works on serotonin and norepinephrine levels. I dont think I need any more of the noreph in my system! All you can do is try. Most of us know right away that something is not going to work as soon as we take it! Trust your gut...you're the only one living in that body so dont let anyone tell you what you know isnt right!

KC

I'm not Dr but for what's it's worth I reckon hormones could cause problems so I'd be pretty excited if I found that out too! I've always suspected mine to be causing me problems before I found out about POTS (had issues with severe pelvic pain episodes before periods in the past). The health-care system here has been so crappy though, I wasn't even referred to an endo. It's something I am going to have to think about pursuing...

LL,

I had to see a naturpathic doctor to get the testing done. It is a saliva test where you spit in these little tubes at different times of the day. It was super easy and fast too. I hate to even hope but I am sooooo ready for some relief! Check out seeing a holistic doctor if you cant get anywhere with your regular doctor!

Cheerio!

KC

I guess this question is more for the ladies. I was wondering if a severe imbalance of the female hormones can possibly trigger dysautonomia symptoms? I had mine tested and they were horribly low. My doc said that with progesterone levels as low as mine it will cause havoc on the nervous system. He was hesitant to say that this is THE cause of my problems but seemed confident that I should see some improvement. At this point I dont want to get my hopes up but I did read about low hormone levels and it does seem like a possibility, especially when you take into account that when the hormones get that low is puts undo stress on the other glands. What do you all think?? Thanks for reading!

KC

Perhaps POTS is just rarely understood.

LOL! Had to laugh at that one! :-)

Dear Dazed,

Your story is all too familiar to most of us! Its VERY frustrating to KNOW something is wrong with you but have everyone look at you like you are nuts! And you are a nurse for crying out loud! I am in a similiar boat as you. No doctor that know a darn thing about it is close to me. The best thing I have gotten is a heart rate variability test from a very well know nutritionist fellow in my town. It measures how your ANS is working. It was the first test that showed something was indeed wrong. A few folks on here have told me that a person with dysautonomia needs to determine what is causing it. Recently, a friend whose daughter is going thru this also found a regular doctor who would just listen and when they were all done talking she said the first thing they would do is test adrenal function. I started researching it and was floored at how much havoc it can cause even if they are just not workin to their best ability! Most docs wont even look at it unless you have one of the more serious conditions with adrenals! I'm seeing a naturpathic doc and we are going to discuss this at my appointment tomorrow. Keep fighting, keep researching, keep a good attitude cause this can really suck the life out of you if you let it get the best of you. I have been ill for about 14 months and it really hasnt gotten so much better with time but it's still not "normal". They say here on the site that you will find your "new normal" and move on from there. Message anytime if you want and keep reading the boards....they are a wealth of information and so many of these wonderful people have truly saved the day for me many times! Blessings to you!

KC

Mirry-

My heart goes out to you. I have been there. Not understanding why nothing seems to be working, feeling like you dont deserve this and most troubling, when will this ever go away! Trust me when I say there is hope. It is difficult. You will need an outlet to get through these feelings. I have a prayer journal that helps me and I've just started the process of going to see a counselor just to talk about dealing with this crap! Please know that there are others who know and who really do care about how you're feeling! I wish the best of luck to you!

KC

One more thought as to "why" swimming might make you more tired than walking.... If I remember correctly I think you get a bit "dehydrated" in the water (the "prune" effect which is usually most noticeable in your fingers and toes.) Since we seem to be sensitive to any kind of dehydration, I'd be curious as to whether or not that would account for being more tired.

However, since you found that you're now equally tired with walking, maybe it was just a coincidental occurence and was just part of the whole cycle of this dysautonomia.

Hope you notice some improvements with your exercising in the near future! Glad you're able to do some exercise at least.

You know I've decided that with this condition you just really never know! I have spent a little time researching adrenal problems and I am shocked at how many of my symptoms match! I did not know the adrenals play a part in electrolyte balance or they affect blood sugar regulation! I think I am going to ask my nutritionist or naturpathic doc about this. I want to be tested properly and see if they are messed up! I can only hope this is part of the problem! Thanks for your response. They mean alot to us dysfunctional folks!

KC

Thanks for all your responses! Unfortunately when I went on my walk the other day the same thing happened! I find it odd cause I walked a bunch a few weeks back and didn't have this. On a different note but related to this, a friend of mine has a daughter who has been going thru the same thing as me. We find it odd that we both have this going on and I am 39 and she is 16. She saw a doctor recently who actually listened to them (can you imagine their delight) and she was like the first thing that should be tested is your adrenal glands! No one has tested my adrenals. I may look into it! Thanks again!

KC

I feel your pain! I would try probiotics. It has made the best difference for me. I still have small issues but not like before! :-) Be sure to post what doc says!

Well, today I was already feeling overwhelmed...my son has had some problems in school and financially we are strapped...bla bla bla.

So I get the mail and now they have closed my disability case...they said the doctor didn't comment on my status so they closed the case. The fact is that the doctor's assistant said she couldn't comment or release me and I would have to be evaluated by the doctor at the next visit.

This just iht me like a ton of bricks. I started crying and crying. I hate being broke. I hate struggling. I hate being sick. But mostly i hate having to prove I am sick. It feels hard lately. Believe me if I was well enough to work I would be doing it!! I would love to work...I hate sitting on the couch day after day.

I told one of my ffriends and she basically said "we all have problems"...I wanted to hit her as she walked off in her high heels after her active 12 hour day.

I need to pray pray pray that God helps me get reinstated on that disability insurance. We barely make it on that and I can't even imagine trying to work......................just looking for support and good thoughts...and prayers that I get put back on.

Thanks...

Erika

I believe that prayer is the best gift you can give someone so I will pray for you Erika. Please keep us updated!

KC

Hi! I have been noticing that when I do some forms of exercise I get very fatigued afterwards. I went swimming with my youngest last week, had a blast but felt like I had been run over by a truck the next day! Took me a day and a half of just "taking it easy" to feel like I was back to even my messed up normal! What is this and why does it happen in dysautonomia? I dont get that bad when I just walk so is it that I'm using a large group of muscle in other forms of exercise? Thanks for any information! Have a great week!

KC

I try to distract myself. Whatever I can do that will distract me I do it. I often call my Mom just to have someone to talk to if I'm feeling really bad. I will watch a movie or something like that. Sometimes I even watch that really trashy TV (like Jerry Springer) because it really distracts me! LOL! I also remind myself that this is my life RIGHT now and I just do whatever it is I need to do. I am luck that my children are older cause it would have been so hard if this would have happened when they were younger! Keep your chin up and remember that there are people on here who truly understand your condition. Best of the week to you!

KC

I had some a while ago when I was suffering with anxiety (which was probably actually the onset of POTS I believe now as it happened after 'the virus' I had, after which so many other health issues occurred!).

I was thinking of getting some again and so read about it, and it sounds like it could benefit some of us as it's a nervous system tonic, and can help with poor sleep (yes please!).

Here's some info, in case anyone else thinks of giving it a whirl.

http://www.health4youonline.com/health_sup...ena_bf30308.htm

Well I looked at both sites and it does say it could help with sexual dysfunction (could be a plus LOL) and with nervous tension so I would be willing to give it a shot. My only problem is no matter what it is I try if it's supposed to "relax" you I usually end of feeling so weird I quit taking it! :-(

Hey Janet!

Sorry you are experiencing such a severe episode! I have had that burning feeling a few times before and I really hate it! I have had times where the top of my body is so hot it feels like my skin is burning and I actually have a fever but the bottom half of my body is cold and needs covers! The last time it happened it was just my left arm that was all hot and burning like. It's so odd and hard to explain to people! I hope you feel better sweetie! Get some rest!

KC

"This sounds very much like the Heart Rate Variability testing I had done by the nutritionist guy I saw. It was the first real "proof" that something was not right with my ANS. It measures your heart rate for about 500 beats split between lying down and then standing up. My test showed that my parasympathetic system was not regulating properly, especially when I stood up. My doctor said he had never heard of this and gave me that look like is this for real? I know for a fact that they use this same type of testing at one of the Mayo clinics cause it was on the story someone posted of a teenage girl who kept passing out all the time and all the stuff the went through to get a DX of NMH. Some of you might remember that post some time back! Anyway, I would love to hear others who have had the HRV test done and know if they too had a detection of a ANS in dysfunction."

Wow, KC, a nutritionist did this for you? Who, where? Does he have a brother in GA?

In Ana's post, she mentioned that the testing was ONLY done lying down. THAT"S why I question how or if it works. I want to learn more too!

Thanks-

Julie

Hi Julie! I was just going to tell you that I have heard that a lot of alternative medical people are turning to this HRV testing. I know of a chiropractor who uses it and I've heard of a few naturpathic docs using it so I would look around in your area and see if anyone is offering it. Try searching it and see if anything comes up. Worth a shot!

Good luck!

KC

This sounds very much like the Heart Rate Variability testing I had done by the nutritionist guy I saw. It was the first real "proof" that something was not right with my ANS. It measures your heart rate for about 500 beats split between lying down and then standing up. My test showed that my parasympathetic system was not regulating properly, especially when I stood up. My doctor said he had never heard of this and gave me that look like is this for real? I know for a fact that they use this same type of testing at one of the Mayo clinics cause it was on the story someone posted of a teenage girl who kept passing out all the time and all the stuff the went through to get a DX of NMH. Some of you might remember that post some time back! Anyway, I would love to hear others who have had the HRV test done and know if they too had a detection of a ANS in dysfunction.

Have a good weekend everyone!

KC

Can you give me this nutritionist's name? I'm in Oregon as well. Thank you!

Well Hi fellow Oregonian! You live real close to me in fact! The guys name is Jens Riogeist. His office is called Riverspirt Wellness Center. His number is 503-538-5128. He also does the autonomic muscle testing to see what the body is saying is wrong. It's very different but I was shocked at what he found on me. Check it out and feel free to message me if you need more info! I believe the initial testing cost around $100.00.

Well I got all excited to watch Dr. Oz's show on panic attacks and unfortunately there was nothing about dysauto or POTS! They did list MVP as one of the causes. I was surprised to see the 4th on his list be acid reflux. Now I know I have it pretty bad and so do many of you but I have never heard anyone actually say it can cause a panic attack feeling. I wanted to take that to my Dr. and say did you know this??? The other causes were Graves Disease, pheochromocytoma. I've been tested for the pheo a few times. Oh and I have written to Dr. Oz a few times on having a show on POTS and Dysauto...maybe they will consider it if enough people bug them!

KC

Hmmmm. This might be the test results that Dadof2 just did & posted for us all to see. Very interesting. I wonder where you can have the test done & what implications it has for tweaking treatment?

I notice that Ana speaks primarily of diabetes as a causitive factor for autonomic dysfunction. Very few of us here have that as a root cause. We have connective tissue disorders, MCAD, post-viral onset, etc. Wonder if the testing is still accurate for us. I find it hard to believe that it only takes 5-10 mins lying down to get a DX. I would guess that my HR looks pretty normal lying down. When I stand up- different story.

I'd love to learn more. Anybody?

Julie

This sounds very much like the Heart Rate Variability testing I had done by the nutritionist guy I saw. It was the first real "proof" that something was not right with my ANS. It measures your heart rate for about 500 beats split between lying down and then standing up. My test showed that my parasympathetic system was not regulating properly, especially when I stood up. My doctor said he had never heard of this and gave me that look like is this for real? I know for a fact that they use this same type of testing at one of the Mayo clinics cause it was on the story someone posted of a teenage girl who kept passing out all the time and all the stuff the went through to get a DX of NMH. Some of you might remember that post some time back! Anyway, I would love to hear others who have had the HRV test done and know if they too had a detection of a ANS in dysfunction.

Have a good weekend everyone!

KC

Thanks for all the replies! Its funny cause I posted this like in November and no one commented then all the sudden people started commenting! I have not had the guts to try it. I dont think I will cause I'm just afraid of what will happen. Even though I survive all my episodes and deep in my heart and mind I know that I'm going to be ok I absolutely HATE having them. They scare the crap out of me!

KC

Hi Ericka!

Well my favorite is Powerade orange but if that's not your thing I do believe there are alot of flavors out there between the two brands. Someone was telling me about the Gatorade Focus has a few different flavors. I think Powerade has a "diet" one that has strawberry kiwi. I guess you just really need to try them. I have tried a few but I always go back to the orange Powerade! Good luck and also look in the natural foods section. There are some over there too!

KC

speaking of stimulants..

now please no judging if in anyway i could take this back i WOULD. actually everyday i wish this was the one thing i could change in my life. But i feel that the reason i have POTS this bad now is because i tried ecstacy a couple times. i know i had POTS symptoms when i was younger, but after doing that drug withing 2 days i had a full POTS crash. I really hate myself for being that stupid.

Dani- Please release yourself of that anger you have about trying the ecstasy! In a "normal" person you would have had a completely different reaction. I had NO IDEA how bad I would react to the very small dose of Ritalin so I understand. It took me months to get over the fact that I even tried it when I could have figured out other ways to deal with my ADD! God knows your heart and trust me He understands!

KC

Adderall is definitely what CAUSED my POTS. I'm sure it can work as a quick fix for the brain fog (but then again, so would cocaine) but it is causing serious long term havoc on the rest of the body, making pots as well as the brain fog worse off in the long run.

I'm with you Bella! I took ritalin and I have never been the same since! Doc said no way could that have done it but I was fine one day and then living this nightmare after the stimulant! Maybe some people's nervous system cant handle it!

Hi Lenna,

Does he have med sensitivity? I would try the generic form of ritalin and then cut that in half. I had a very serious reaction to just 10 mg of ritalin. Just err to the side of caution you know what I mean!

KC

I tried Zoloft a year ago and not only didn't it make me feel better but i got a lot worse.I thought i was going to die.I stopped it after two weeks and i started feeling better gradually.Everything i have tried either gives me side effects or doesn't help.To be honest i don't see the point in taking so many drugs since none of them is a cure for POTS or NCS.I am very frustrated by the fact that doctors treat us like lab rats and prescribe whatever comes in their head on.

Speaking from my personal experience whether i was taking meds or not POTS crises would come and go regardless.I haven't taken anything for 3 months now.Sometimes i wish there was something to take and stop the symptoms but i feel that if i keep trying all these drugs i'll end up with renal failure or some other problem....and i've got enough already!

I think that if all drugs increase your symptoms you should simply not take them....and for me Zoloft was a terrible drug.I don't think that it does anything for dysautonomia and it should only be given as an antidepressant.

sorry if i sound a bit harsh but when i read posts about drugs that make us worse it really upsets me.I wish there was something better than what we already have.

Take care

Elena- I completely understand your feelings so no apology needed! I noticed it took me several days to feel better after that 5 hours episode and that is just not something I want to keep going through. I think that we get so desperate for something to help us that we try just about anything! I believe FOR ME that time is what has made the most difference. Whatever caused my dysautonomia seems to be getting better but not completely gone yet. I continue to see my nutritionist guy and use my other natural treatments. I continue to pray for myself and all of us here that are living with this very misunderstood condition(s)!

Best to you today and always!

KC

I usually start off at a 1/4 dose of a new med when first trying it. It's always easier to add more slowly, after a week or two. I've even had to try a 1/4 dose every other day, just to start getting it into my system. My doctor recommends it, and then, unless it's making you really sick, you need to try to keep on it for 4-6 weeks to see if your body adapts. Talk to your prescribing doctor first, though.

Good luck!

I may try it again but I'm not sure if I can get the pill split anymore. It was so very tiny when I cut it in half! I think I will try talking to my doctor but he really doesnt have alot of suggestions anymore as he just calls me "weird" but in a nice way! LOL! Thanks for the responses guys!

KC