lissy

Leize,

Sorry about your experience with her...it doesn't really surprise me though.

Ok, Like I mentioned before and it probally saved my life maybe I should tell you more in detail of my situation.

I had a 2 year old and 5 month old and was having anxiety attacks everytime I ate, I had absolutely no energy and layed on the couch almost 90% of my life.I did drink to deal with the depression I was facing because I felt like my complete life was out of my control (even my body) I ended up going to a crisis center and begged them to admit me, I thought I was just depressed at that time, they took me in the same day.

I had a meeting with a panel of therapists and described my feelings and symptoms and I was DX with generalized anxiety and major depression.

Anyway I went home after a few days by that time blending my food was the only way to stay alive! And I started lexapro ,within 2 weeks I was a completely different person ****FREE and felt in control the eating symptoms were much better and I went off of the med in 4 months.

I believe all along POTS was my problem but luckily that med helped me in everyway.

I don't take any meds now but will be starting therapy in a few weeks to get over my fears, you need to find a counselor that you are comfortable with or they won't be able to help you.

I have many symptoms when I eat and after currently, and I seriously believe its because the blood is pooling in the digestive system causing all the other annoying unexplainable things but its everyday and I have to just keep eating. Not eating is making you worse and is going to make your symptoms worse. You probally focus so much on what your body does when your eating that it created a fear response and that has to be stopped.2 ensures is good 3 is better and the PLUS type is best for maintain weight. Leize I know how u feel honestly and I have had the (*support) issues in my life too, where your life is completely out of control and your body is not working right either, its hard and sometimes feels impossible but there is a way.Remember the strong person you once were (mentally and physically)the person you were before life got the best of you its still in you and you have to find ways to bring it back out and you will be okay.

I think when we deal with chronic Illness or other problems in our life we search and search and wish someone could come to our rescue , and we also depend on our spouse and family to be understanding and supportive and that doesn't happen in everyones case so then we reach out to our doctors and counselors and if that fails we feel alone and helpless. Reach to GOD and within yourself (because thats where your spirit lays) and keep fighting for yourself and your children.

Sorry if I said to much brain fog has been good to me for a few days now:)

But I thought maybe that would help you or someone else and thats is what we are here for.

Lissy

Leize,

There was a time where I had extreme symptoms with eating and I was down to 80 something lbs and I actually had more of a throat feeling problem and anxiety which was due to POTS or anxiety or both, but anyway I got out of that phase with lexapro and I blended my food in a blender, and after taking it about 4 months I quit taking it and was eating mostly normal and back to a healthy weight. SO even with POTS or anxiety as the culprit you should be getting some help soon even with therapy.I hope you get relief soon and hopefully you have family that can help with the kids if you do have to go impatient.

It will get better I once was 80 something lbs and now 102 and trying to get to 115 or 120 but have some problems going on myself...But I'm also awaiting therapy .

Add me too, it doesn't happen to often but I know what your talking about.

Thank you all so much I did decide to make an appointment with a counselor that specializes in phobias in about 3 weeks and I am going to get past this I know, so I will update on this subject once I accomplish at least trying the med! But I have a goal start this med before summer maybe sooner.This is a great site

Lissy

Hey all,

I know for sure I have low B/P and low lower vascular reactivity and have been told by 2 cardios to try florinef, but this phobia of having a bad reaction (side-effects) is not allowing me to even try medication, and if I cannot overcome this I'll never know if I would be one of the few that recover.

My family has become disappointed and frustrated and said someone so sick would try anything to improve their health and it somehow has become a reflection on me of am I really as sick as I say I am...

I know some may reply saying I need counseling or something of that sort but I have also thought of that option but then I would just be letting a stranger convince me that everything will be ok and just try it.So thats why I'm posting it here because I don't know if this is just a fear and medications cause some sort of panic attack or I have a true sensitivity or both.

Most of you have at least tried Meds that are available and I would like to know was the reactions SEVERE and is there a good reason to avoid chancing trying them?

If I do try this med what should I really look out for, my everyday symptoms with POTS is hard enough to live with and manage and I hate to think I'm going to add to the list of problems.

I want nothing more than to get my life back and it seems like my health is at a fixable level based on what my doctors have said please if anyone could help me with this obstacle I would be so grateful.

Sincerely ,

Lissy

Since seeing this topic I have looked into Central Sleep Apnea and I believe theres a 95% chance I have this.Even before I got seriously affected by dys. I had those apnea symptoms and I am wondering if autonomic problems cause this or does apnea cause autonomic problems? I haven't been able to find to any articles on this causing low blood pressure (*more so high pressure problems)???

Also one of my main symptoms is EXTREME Fatigue does anyone have apnea and use the cpap or the other machine and feel more alert and have more energy?This would be wonderful if I could relief that symptom.

Lissy

WELCOME:)

Yes I hear I look fine and many times I say OH REALLY!

I use to try to explain my condition to everyone and figured out they could care less so I quit and say I'm just fine...

I have no prob losing weight I have trouble gaining cause I barely eat:P....anxiety attacks ???

With the constant brain fog I really don't have to play an actress role most of the time everything around me seems unrealisitic (like a movie and I'm in the way)

Anyway its a great site with lots of ppl who have alot of knowledge and caring spirits, make yourself at home;)

Lissy

I haven't had a study as of yet but I have thought it may be a good idea but I've had so many tests I hate bringing it up at doc. appointments. I wake up gasping for air and have this reoccuring feeling like something is blocking my throat it wakes me every night.I know I do not snore but something must be going on,like I forget to breath when asleep I have always had this since I can remember...any thoughts.

Lissy

Well did these sparkles go away right away? If so I would think it was B/P related if not and it took an hour for them to go away I'd say it was neuro related I get migraines sometimes silent with the aura and it looks like the MATRIX movie digital some missing vision very scary but now since problem at the same time and it was for me I believe the anxiety of not knowing what was going on and I spiraled out of control, but I get those attacks also without the sparking too....so who knows.

Lissy

My dizziness is a floating rocking sensation its pretty constant and I have periods of when its worse , even when laying down.If I woke up to early or have been to active and I have to go out I tend to have to hold onto counters/walls ect. and feel very faint.An example yesterday I went to my cardio appointment and they had me standing about 10 minutes at the front desk and it was also very cold outside before entering maybe (20 degrees) when I finally got back to the exam room swaying down the hall it felt like, the nurse took B/P and the 1st time she said thats weird you don't have a B/P and she tried again it was 90/50.So I figured when I have the most dizziness it must be when my B/P is too low....also during menses.

I sent one also:) Keep your fingers crossed

I have been dealing with this chronic back pain *seems muscular* and it moves around from upper near neck to the middle and I did tell my doc last month she did an Xray and said take a muscle relaxer....me and meds don't mix! and I thought anyway why should I just take a pill when something could be actually causing this?? The pain is severe and has been daily for a few years I did have a MRI of the neck last year checking for Chiari but that was neg. also I woke up with my shoulder feeling out of place with pain when I move it in certain directions.

I'm so tired of having so many problems and never knowing what is causing it.

Lissy

Lissy-

ONE positive test is an indication that something is going on, especially with your clinical livedo reticularis (skin stuff.) Have you ever been treated with any blood thinners- aspirin, Plavix, etc? What are your worst symptoms now?

Julie

Hey Julie,

I thought back when I had the test (*****YAYYYY***) they found something and once the rheumy did the other tests she completely dropped APS she was suspecting lupus or something.My major symptoms are of coarse dizziness, very bad daily fatigue that is with me from the moment I open my eyes, anxiety like attacks, chest pains , some upper left quadrant pain right by my rib. My BP has actually gotten better by itself its mostly normal now after any years * with no med help.My memory is terrible.

I have no idea what to do seen so many doctors had all autonomic testing except so vascular studies at Cleveland clinic which I am planning soon.

Something that worries me is there were a few times in the past like 10 years ago when I had an episode of not feeling right and forgetting which side of the road to drive on and another time I went to the ER with my 1st pregnancy with Aura no head pain but I forgot my name.They pasted pretty quickly but it was very scary, when I get migraines sometimes they bring numbness....

I do see my cardio in a few weeks and I'm gonna ask some real serious questions, I'd appreciate any suggestions if something comes to mind when reading this

One more thing that might not have any importance I did have those blood tests done when I 1st got seriously ill and I did noticed a blood blister on one of my fingers right by the nail bed it was kinda weird but I never thought nothing of it and never even asked a doctor, it may have been nothing.

My mother is in her early 50's and have had times in the Hospital with low white cells from an unknown reason and they had to give her blood and she has also been told she had mini strokes but she also has a learning disabilities and never remembered what her DX was???

Anyway I feel close at finding more answers soon I just pray I will have some sort of treatment to give me back some of my life.

Lissy

Hey all,

I have been looking up vascular problems and its kinda confusing me.

I have the mottled skin like alot of you have and it 1st started on my feet about 4 years ago, when I got very ill it started spreading up my legs and now its my whole body except my chest and face and back. It doesn't happen just when I'm cold or standing, I can be warm and sitting. It does go away mostly when I lay down.Thats is one of the only physical signs that you'd really see that something is going on in my body...My concern about just calling it POOLING is its happening to most of my body. Has this happened to anyone else and have you gotten different DX's?

Another thing is Miodrine the medication that is suppose to help with the pooling issue?

I have have testing for APS in the past with one positive and 2 neg. so they ruled that out.

Lissy

Resting is 75-85

Standing ranges from 110-135

If I add heat or alcohol 150's steady.

Lissy

I don't necessarily think they have to do with POTS except the bilirubin that can be from not enough fluids over working liver to eliminate wastes products and toxins. But I would look into those results more they are signs (anemias and other disorders).Also I have never had low blood counts but I have low blood volume, I have had high alt. and bilirubin and my doc at that time did an ultrasound of my liver which was fine.. the only other abnormal was a AppT but the 2 following were normal,but those are the only abnormal results I have ever had.

Goodluck and keep us posted.

Lissy

I mostly have the hot flashes and worsening of symptoms a week or two before my cycle. Hormones have to be the issue possibly a sensitivity to the level changes, I always considered a hyster but I'm hearing some of you still have these issues ...so I don't know what will help??? I always put a ice cold wash-cloth around my neck and get in a cold area and sit down because I get so dizzy.

Well Leize I am feeling EXACTLY the same way except the head blowing sensation but evertyhing else is exact!!! We really need to keep in touch one of us is bound to find out what this is.I did have my 24hr urine catecholemines checked just recently and that was normal....so I guess well see if drinking those will really make a difference.How long have u been drinking them?

I have mentioned this before that I had the same thing happen a few times it was more severe and serious when I was pregnant. Drinking ensure is a great idea and it may help your digestive system get use to digesting, how many are you drinking a day? I am also starting those next week when I can buy them..!! very expensive.What is the feeling you get when eating exactly? I know there are a few of us on here that have trouble eating. I read an article the other night about not eating properly causing autonomic problems and using supplements and a very balanced life (with deep breathing, low stress,positive mind) is suppose to get in back under control. I thought yeah right but I definitely haven't had the best balance so I think I'll give it a try along with the ensure and possible ssri. I am determined to get my life and body back!

Lissy

I feel terrible 90% of the time my vitals are normal sometimes even when I feel my worst beside the HR its high standing no matter how I feel...Alot of symptoms there are really have no tests to determine what is malfunctioning . Usually if you have a weird symptom you make sure 1st that you are getting enough fluid and nutrition and observe exactly what your feeling write it down and see if it improves in a few days and if not check with the doctor, or you'll drive yourself crazy. I get new symptoms that come and go every other day and at 1st I ran to the doctor all the time but now Its pretty predictable to me and hopefully you can find comfort in some way.BTW were you told you were hypoglycemic? And if so you know its so important to eat a proper diet, I mean did they set you up with a eating plan?

Lissy

Hey all,

I am debating on my meds to see what works for me and I do have a short story to start this topic. 7 years ago I was having alot of so called panic attacks and DX with GAD and I tried Lexapro for a few months total because it brought me to normalcy mentally with the attacks and I was able to eat thats when the attacks seemed to affect me most and also I was very fatigue that also went away and I was okay besides a few days throughout the year or after drinking alcohol or walking in stores it seemed, until I had more children and really after the last child and never recovered..

My only concern is besides developing a phobia with taking meds; I remember when I started the lexapro within the 1st few days I was having euphoria laughing for hours about the strangest things it eventually stopped and then it seemed I needed more and more till I got the max dosage and it seemed to not have any effects???(the wonderful feeling of mental freedom) I was just normal.

I have taken zoloft-----dangerous ! not good for me severely depressed

Paxil-----more depressed didn't really work at helping anything

I also have been prescribed florinef, midorine, and a bb I guess its try one at a time to see what works best...? I was thinking to try lexapro again before trying the others since they have more side-effects ad my BP hasn't been much of an issue and my blood volume is mildly low.

So what does everyone think and what has been the rundown of your experiences?

If you do take lexapro or have what was your dose and did you have any of the euphoria ?

Thanks Lissy

Leize,

I fully understand where your coming from and you wouldn't believe how frantic I have been and how many tests I have had and they have mostly been normal. And the unknowing has caused more worry and fear. I have been through the testing at Cleveland and was scared to death, I am scared of anything that has to do with meds but it went very smoothly and I did not have to do all the testing based on the 1st set of tests, which made me very relieved. The autonomic nervous system is a very tricky thing and when its outta whack anything you subject your body to (actions, foods,meds,emotions) seem to set it off. But with that said you have to decide whether you wanna live or stay in fear...with my own experiences I avoided everything stopped eating certain products ***anything I thought I have never allowed in my system ***nothing new! because I thought it may trigger an allergy and then I was avoiding food that seemed to have triggered in the past, then meds that gave a bad reaction( panic reaction) Numbness, tachy, I have never had hives, swelling or anything like that. Basically I think I have a phobia or have developed one and it has caused more damage than good. I have been trying to protect myself and I have been hurting myself in the long run.You might not wanna hear this I certainly didn't want to address this within myself but its a serious possibility.

I have been hypoglycemic a few times and it got better I avoided sugar and starches and had to eat sugar-free and alot of veggies and simple carbs. Now I can eat anything but my problem is when I sit down to eat I get Pure panic and flushing and feel like I can't swallow properly and it prevents me from eating or I just give up because I have to keep jumping up and calming myself down. I am going to start drinking ensure and hopefully that will help build up my strength and who knows what happens if you go for long periods of time depriving your body of vitamins and minerals.

Don't get me wrong I am not saying all this is a phobia or mental condition I think maybe it starts from autonomic dysfunction.???

If you can't eat seek a reason why ,see if there is really allergies or if its panic and if you can't eat drink those enssures 3 a day. I know things are overwhelming try to stay simple make sure you get enough calories ,rest your mind---you said you were anorexic what do u mean by that? by choice or no appetite?

Just wanted to let you know I am going through the same issues and it will get better! You have to be determined and not weak to this mentally.

Lissy

Leize,

I hope your feeling better, I have been through situations like your speaking of many times in these past 3 years and its so scary and frustrating!!! Especially having so many expect ions and responsibilities with having a family. You are not alone with the EATING problem and the malnutrition I believe plays a part in sugar regulation and worsening of autonomic disorder. I know once I was so sick to the point of trying to avoid anything and everything just to prevent from having episodes or decline in symptoms I was missing out on my daily nutrition needs and have been for years now. I'm 5'3 and weigh 97 I'm 20 lbs under weight, and it would probally take nothing but constant effort to gain the weight I need ,and alot of forcing through the BAD feelings that come along with me eating.I was told to gain the weight might actually help with the autonomic symptoms and I am going to start drinking ensure this week and in Feb. I see my local cardio and am going to try florinef and lots of extra fluids and salt. I haven't done anything to try to improve this condition at a medical standpoint I wanted to see if my body would adjust itself and out of fear I have prevented myself to even see if I could improve any....but I'm tired of feeling this way and looking so fragile and sickly I need to do something.Maybe if you have this concern of having MCAD and allergies that should be your 1st priority of getting it tested and maybe seeing a endocrinologist to check your metabolic system and once you get those possibilities under control you can get better management under this condition.

I wish you quick answers and strengh

Lissy

Medications that seems to trigger ----Antibiotics, Anti fungals, Pain meds during labor, Epi- for dental work

It has happened mostly at home, approx 10 times in a medical environment.

Warning signs---flushing, heightened senses, sometimes chest pain, then the shaking then cold and finally exhaustion

periods of calmness like another posted.

Duration-40 minutes to 4 hours

Had all autonomic testing- No PAF or severe form of dys

Clear MRI's

Currently doing the 24hr urine for Pheo.

It seems like my body is going from extremes hot to cold full body and mind fatigue to a heightened sense of (heart rate, breathing, senses)

Shaking has always happened sitting or laying and a lesser version during emotional stress/trauma. Also pupils dilate. Adrenaline rush???

Maybe the hyper type of POTS is my issue or a pheo I will soon know.

I know the chemicals or hormones are all out of wack with all these conditions I guess finding out which one is malfunctions is the key. I personally don't think dysautonomia as a whole is just dysfunction for no reason, I mean our condition is being diagnosed as a whole (autonomic nervous system is not working properly) but many organs are a part of that and if you haven't had them individually tested the answer properly will never be found, you'll just be treated for the obvious and not the true problem. Who knows maybe we'll never get all the answers in this life-time the medical field is at a slower pace that what most realize this problem has been happening for many years and called hysteria and I'm guessing that was what 70 years ago and we had no concrete knowledge yet ....We are not looked at as a individual anymore doctors don't have time if our symptom fits the patient that just walked out 15 minutes before us that is what we have and nothing gets solved. Look at AIDS how many people were told it was a gastrointestinal problem and so many died but they invested more research and money into that because it was affecting more people and some were rich. I can go on and on sorry to get off topic, but we come here to this site for support and we compare symptoms and its ridiculous that we have to figure this out ourselves because the meds that are available don't benefit the pharmaceutical company's enough and the information that is known about these conditions are so inadequate because of money they don't have enough money to research more in depth. I seen a few ppl on this site that were here for years finally get a REAL diagnoses and they never came back I honestly believe most of us here have something else going on, not just dysautonomia thats secondary. (Dysautonomia is a group of signs and symptoms). Like I have said before I was told most of my life I have Generalized anxiety disorder I have went to the ER for this shaking and was told is was a panic attack and now 14 years later I'm told I have autonomic nervous system dysfunction. I pray to god for all of us to get the real problem under control and be able to stay positive throughout this process. All it would take is One rich person with a very intelligent doctor that has nothing but time and this could all be figured out.I know most of us have been to the best hospitals just to be right back here asking each other questions it is because they still don't know and we are just test subjects while they are still trying to figure it out. Sorry for my rant but its the truth, I will continue to come here and read what other have found out and post the crazy symptoms I have to endure everyday, and we are in this together and just knowing we are not alone is what matters the most.

I get this symptom every once in awhile, usually when I take meds and sometimes they just come on...I went to the ER the 1st time it happened which was when I was 18 and I shook for hours until the doctor gave me a 1/2 a zanax and told me I was having a panic attack. It actually happened when I was having my hemodynamic tests at Cleveland Clinic when they injected me with iodine I shook and shook for about an hour , they gave me a warm blanket and it finally stopped. The nurses said it was probally just my nerves, and they have seen others react like that before but nothing to do with the iodine.