denabob

I agree with Jackie except I do compare myself with others I just pick others who have alot worse illnesses to deal with! I know when we are sick it doesnt feel like it could be worse but at least we do get better again. It is chronic and never ending but not life threatening( as long as we dont get hurt in the fall ) we are not completely wheel chair bound or have other way more difficult things to deal with! i am fortunate that I can almost pinpoint my bad week because it's the week before I can get my octreotide shot ,I take short acting shots 3 a day and proamitine around the clock that week to keep from losing conciousness. I'm hoping this one wont be as bad ( of course ) but I figured out I was being an idiot. The week before my med runs out is my period ( good timing huh?) I have always had very painful periods and have been taking tylenol for women during this time .well needless to say I figured out that it has a diuretic in it and we all know what a no no that is!!!! This time I wont be taking it and hope it will make a difference! I think we should have a plaque made with the emergency test saying on it to keep our spirits when we are down, I really enjoyed that!

Just having an oppprtunity to witness for my Lord is reason enough to have this illness! I'm encouraged by the out pouring of faith I've read on this site! I wish you the best of luck runner girl on your testing!!! you're in my prayers!

Hi kari! I'm sorry you have to go through this ordeal with us but I welcome you to our support system . I have never had the chest pains but the rest sounds way to familiar! My tilt was possitive and a standing test shows heart rate increases also. They just hook you to an automatic blood pressure cuff and make you stand still for about 20 min to take by the minute readings on heart rate and bp. Of course un-medicated I didnt last the full 20 min but they got the info they expected. A friend of mine had the type of pain you describe and she was told it was a strain to the heart wall vioxx also helped her but it only lasted about 2 months and now just comes and goes. No real danger to her health just alot of discomfort but she didnt have any other symptoms at all! The only real advice I have is to find a good DR and if you feel you have POTS then find one who knows about it because alot of DRs dont! Good Luck and Take Care!

I can only imagine a child with this illness, it's so frustrating when it is your own body but a child has a hard time telling you what is wrong. My heart goes out to you ! I only pray that my daughters dont end up with this! A good Dr can mean the world of difference in his quality of life so make sure that is what you get!!! You're in my prayers and be strong because the more you learn about this stuff the more help you are to him!!!

FANTASTIC!!!!!!!!Congrats!!!!!!!!!!!!!!!!!!!!

I really dont know if I've already mentioned this or not but I cant find it so it may have been on another site I was reading about neuropathy for my aunt(she's lots some sensory nerve function in her legs/ also possible thyroid problem) anyway, a symptom of autonomic neuropathy (strange but true) is the spots on your tongue ( taste buds and such) in these patients have areas that have no spots. I've described it as looking like cigarette burns ( I dont smoke) the spots can be painful at times (like when you burn it with food) My family doc called it a geographical tongue (no known cause) I've had it since I was born- never thought to mention it to any Dr with all this! My cousin is the only other person I've seen with it and she has mitro-prolapse valve and fibromyalgia( which are also linked to dysautonomia from what I've read.) There is a point to all this- I wonder if any of you have this strange symptom?! If it is linked to dysautonomia then I have had it since birth!! I'm not real educated on the dysautonomias so any input is appreciated! Interesting on the theory of heredity because it would include 2 more relatives just affecting different parts of the body.

Actually I wanst told what it was but that MS was definitely ruled out and I had that confirmed by 2 neurologists. Curiosity strikes again! This is a real strange disorder and uninformed docs dont help much! Also no implants but I can also see how it could cause a problem there just isnt a good way to know.

Just a simple AMEN to not accepting defeat and the prayer for more good than bad! Very well put!!!

CONGRATS!!!! I guess everthing does happen for a reason! I'm glad to hear that you have a really caring doc, that's priceless! Good Luck on the new job and as for the anti-anxiety meds, pride shouldn't be an issue - you have a very complex illness and sooner or later we all have to get help dealing with it one way or another! I read somewhere that if a patient that has POTS isnt depressed already then they will be before it's all said and done! Take care and relax!

I take in about 90 ounces a day at least 60 of that is water but I also drink either tomato juice or v8 in the morning( the sodium levels are high and it seems to help first thing in the morning)I try to limit milk ( it seems to be a trigger for me) Were you dehyrated? Even when I was seriously dehydrated and trying to avoid iv fluids my doc said to drink at least 8 ounces an hour. I'm going to look into those stockings as well and was thinking about excercise shorts for under my clothes for summer. Anyone tried that? My pooling seems to settle in my tummy or at least it feels that way!

I wonder since you're not feeling nauseas or some of the other distinctive POTS symptoms if that's not what you have. My aunt has had alot of the symptoms you've described including coldness of legs and feet , she's lost some sensory nerves in her legs and they are just now finding thyroidism to be a problem also! I've done some reading on her behalf and from what I've read maybe you should do some checking into sensory neuropathy. Also a autonomic disorder but affects a different part of your system. I'm not a DR so I cant begin to diagnose but it sure sounds the same as what she's going through. Even though your thyroid is under control now it could've done some damage already. You sound like a very intelligent person and I wish I had done more research on my own before diagnosis. I had never heard of POTS until I had been through 5 different specialists and alot of tests to rule out other things. Good Luck to you in your search and I hope you don't have POTS. The anxiety can be caused by frustration! I was also very active before this illness- delivered mail for the usps- walked 10 miles a day/5 days a week for 7 yrs. now I do well to shop in the mall without getting ill! I understand your anxiety very well it's hard when you feel betrayed by your own body and cant find a reason!!! I'm 30 and otherwise healthy also, I'll pray for you and have hope because you seem to be a strong person and your outlook can make a BIG difference in how you handle this.

I take One a Day Weight smart it has green tea extract ECGC . It raises blood pressure so ask your doc first depending on the meds you take! I asked my pharm. and he said no because it can cause high blood pressure well that's what I need because mine stays so low! My doc said ok so I've been taking them since then and it does help. Nothing will do away with the fatigue but every little bit of extra energy helps!

I really dont know anything about EDS and have been trying to look it up and cant get anything helpful that way either. Sorry I cant help but I wanted you to know I'm trying! I'll let you know as soon as I find out anything! Good Luck!!

I've been reading the handbook. Thank's Louby! It has alot of useful info. Does anyone know the main difference between POTS and PAF (pure autonomic failure) also I read that POTS can be a form of autonomic neuropathy. The symptoms of that are a little different . It includes a strange symptom - the tongue has small bumps (taste buds) and with this disorder it has spots where those bumps are missing. It looks like cigarette burns is how I describe it but sometimes it's worse than others and when it is real bad they can be very sensitive to spicy foods. I was born with that symptom!! Only two people in my family are known to have these "spots" me and a female cousin of mine who by the way has mitro-prolapse valve with few pots symptoms! The handbook shares alot of info on cause and similarities to other dysautonomic disorders. I already have a list of things to ask my doc next time. My family doc told my mom it was called a geographic tongue and they didn't know what caused it but that it was harmless.So imagine my surprise when there it was as a symptom of neuropathy! I've never even told Dr. H about those spots because it didnt occur to me to.Also I saw tests called the valsava maneuver and a pet scan to test (with definite results) for PAF anyone had those?

I just found that site yesterday as a matter of fact. It's a little more difficult to get into than this one though I'm waiting for approval. The way I see it every little bit helps and we definitely have more time and connections to figure it all out than our doctors do! My doc encourages any input I can give him, this illness is as big of a pain to them because they cant fix it or even get anything definite in common with us for treatment!

Thanks for your input! I guess alot of prayer and hope is what I have. We do the best with what life gives us and at least I know that there are others like me who could possibly benefit from something I have experienced that's reason enough I suppose. ( Of course I say that this week because I feel good- when I'm down it looks alot darker than that )

Hope you do well.... I take Zoloft 25mg but I found that I experience less side effects when I take it before bed also it calms me down so I rest better too.If you get too many side effects ask your Dr about the other options out there,personally I think anti-depressents are a good thing for us.

A Dr. once said that POTS/NCS symptoms could wax and wane in regard to their frequency and that some patients can actually experience a remission like state. Is this really possible? I know I sometimes feel worse than others and thanks to my meds even feel good sometimes but I still hope that someday this could get better. Also I've been told that this isnt a progressive disease and more than likely wont get worse as I get older. Any input on that? I'm only two years into this and only 6 months diagnosed so I will take all the advice I can get!Also that the only real risk is what I could get hurt on when I pass out and it shouldnt weaken my heart or cause other permanent damage.

Good idea! Although I have more than one of the choices. I had low bp and recurrent dehydration while pregnant with my youngest daughter but also threw up 24/7 for 8 months then was bed rested for the remainder. Now, I cant say which caused the other. I also have sort of a family hystory ( my mom but with different cause has alot of the symptoms - no passing out )With so few Dr.s who even know about POTS it's hard to tell how many people have it and dont know for sure! I've also had knee surgery with an epidural for anestisia(not sure how its spelled) Been in a car accident with pain to my neck. It is difficult to narrow down one thing but when my main symptoms occured nothing distinctive had happened and it has stayed with me since. Now some docs say that the symptoms can wax and wane or even sort of enter a remission state. I'm waiting for that. these polls are interesting .

Wow! This turned into a real interesting subject! Maybe by comparing ourselves to each other we can do more good than our doctors. I have had MRI scan of my brain mainly to rule out MS but the only thing strange was a unidentified white patch ( evidently not even worth mentioning because my Dr didnt tell me .. my lawyer for soc sec told me - that's a whole different story though )and I have been tested for addisons disease , have had all the thyroid scans , blood sugar tests ,echo cardiograms , ekg , ecg, tilt table , sweat test , standing test ,percent body fat calculation , metabolism test , amount of oxygen used for muscle useage ,stairmaster and treadmill testing (with and without med.)Yeah, I know I've been a guinea pig but finding help is worth it! I'll still request more if anything would help figure it out. The only thing they have come up with is POTS with NCS and some deconditioning of my body (no duh!) I wasnt deconditioned when I got sick I was walking 10 miles a day (5hrs) 5 days a week(USPS) so there went the theory of deconditioning being a cause or trigger. I know, I'm rambling on but thanks for letting me! It's nice to vent!

Just curious, have you ever had a brain wave test? My first bad experience with a nuerologist one of the first things that was said to me was that I had calcium deposits on my brain and by watching my calcium intake I did a little better for a while then when it started again the ball rolled to a new diagnosis and a bunch more tests. Oh well neither here nor there but the point is excess calcium makes me worse also.Not real sure why though.

I was chatting with a friend of mine as I was reading some of the replies to this topic and she said " no matter what people say about the internet , you have to wonder what people like us would do if we didn't have access to each other through this site" I'm very thankful we have each other to turn to when it gets this hard. I noticed in your asking for support that you were first explaining how you are doing all the things you're supposed to and have done nothing to cause this "episode" . So my first piece of advice is to not blame yourself or feel you need to justify feeling out of control. Your schedule is demanding and your body just requires more care than most. I'm going to pray for you and know in my heart that you'll make it! As far as your baby is concerned , I can empathize in that situation. My youngest is 4 and still there are times when my parents have to help ,I'm lucky that they live close and I have friends near to help. I also know that your probably like me (sounds that way) and dont want to need the help of others to take care of your child. So pay close attention because when I'm sick next you'll need to remind me I said this!!!HA HA Your friends and family love you and it isn't an imposition to them to help you just like it wouldn't be for you in a reverse situation. ( I'm good at advice as long as I'm not recieving it ) But really try to take it easy because stress will only make it last longer. Hang in there!!

Thanks so much for all the input! And as far as similarity goes I'm also light complected with blonde hair and hazel eyes. I suppose I'm more NCS with POTS because I do pass out and my mother does share alot of symptoms and my doc actually wanted to test her until he found out that she has arrithmia and COPD which complicates things a great deal. The symptoms are very similar and she wouldn't be able to take most of the pots meds due to her lungs. I've heard alot of my family blame light-headedness on low blood sugar even though they haven't been tested. My symptoms are the same as low sugar but my sugar levels are normal. I suppose they could have a milder form of pots and not know it. Since this illness is usually discovered after all other options have been exhausted I guess we may never know for sure what causes it being able to live with it will have to be good enough. Curiosity isn't something I've ever been able to ignore so put me in the category of "inquiring minds want to know" THANKS AGAIN!!

Ok , I'm very new at this and my doctor can't seem to give me a definite answer. I'm very curious to see what you guys feel caused this. I'm not looking for some profound wisdom just a good guess! I'm 30 and otherwise healthy the first time I ever passed out was due to low blood-pressure during pregnancy 4 yrs ago then I got dizziness that wouldn't subside about two yrs ago I then went through all the tests and list of specialists who just shipped me from one to the other ( like alot of you know ) My doc says a viral infection usually causes it but I cant trace it back to that! any good guess would be appreciated I think the more informed we are the more we can help others Doctors included!!!

I would like to say that my doctor is who told me about this forum but like Michelle said they are so busy because of the lack of trained docs that they dont have the time to respond. The main problem with pots is that we dont always have only pots and our symptoms arent always the same much less always present. I am one of the few lucky ( and I use that term loosely) ones who has been approved soc sec disability with NCS and POTS as a symptom of that. However they want to classify it is fine with me as long as I can support my kids! I find it very encouraging to see that you have a real grasp on your wifes' emotional side to this illness! I've been through a divorce during my struggle for diagnosis and have since been dating a very understanding man so I can honestly tell you what a difference your support can make in your wifes' life!! Tell her to hang in there and not to be too hard on herself. I wish you both alot of happiness.