lmt033167

I would really appreciate them thanks a bunch

Sue, maybe you're like me on the Autism Spectrum disorder? The sensory overload issue may be able to be helped with ssri's, I think that's why Lexapro helps me. My son goes through this and has meltdowns; then is fine; but has no other behavior problems. Like Halloween - he was fine, rang the doorbell said Trick or Treat and thank you when they handed out candy; but all the excitement and costumes and noise just threw him over the edge about an hour after we got home. Since it was 830pm when we got home, the kids got 1 piece of candy, so it wasn't a sugar rush and I just let him cry it out and then cleaned his face and he went to sleep. The more I learn, the more I want to know and different things just jump out at me like genetics - my mother's family have called "insane' for lack of a better word, so maybe it's on her side of the family, because it definitely seems to run in the family just different manifestations. Like me, I never had any of the emotional or behavioral problems my brothers did [even as adults], but I had social problems and liked being alone alot. I know I def had add/adhd type symptoms and growing up that lasted into adulthood.

Nina, have you seen a link between dysautonomia and Autism? I would like to see if there's a link between the two and if it is indeed genetic. I'm going to research some more and would appreciate if you have the time any of the info you have - your description peaks my interest; if you feel up to it It's interesting to me that 1 of my 4 children have Autism, my oldest 2 are from my first marriage and my youngest 2 are from my current marriage. He's my 3rd child and the others showed no signs; we had our youngest daughter tested as well after his diagnosis. I had traits of ASD growing up - photographic memory was one of them; wow how I miss it lol; now I'm lucky to remember yesterday. It will be very interesting to see if my youngest son; who's 9 now will develop some of the same ANS problems I have. I know it wasn't anything I did as a teen, I was an [angel] lol or nerd; unsociable; whatever you want to call it. School; work; sports and reading was more important than going out with friends. I never had a drink until my 25th birthday, darn I sound like a real prude lol I was an athlete and ran long distance track, played volleyball, basketball and some other sports...for a girl in the 80's that was 'geeky' Genetics has interested me since he was diagnosed at about 17 mths, because I had virtually every test done through USF when I became pregnant and developed Placenta Previa. The specialist at All Children's Hospital said they found nothing genetically wrong with the tests from USF, but pinpointed the severe blood loss during my pregnancy with him as the cause, but I've wondered about that all these years. Or I can just blame my husband; he was the wild child; bad boy teen lmao! ooo he's so gonna get it when he gets home

Thanks I'll have to read it a few times to take it all in, hopefully then it will make sense. I have some symptoms that are right on with ANS problems then others that are not that might have been attributed to it, so I'm searching for what the causes are

I feel better too when mine is higher, but I can't get mine above 125/80 even with salt loading & midodrine. The only way mine goes up is if I lay down while taking Midodrine. I have NCS & OI so maybe this is the difference, but my cardiologist wanted mine to stay about 150/90. I would love to find a happy medium for me - good higher lvl bp/hr and just the right amount of salt intake not to mess too much with my heart conditions

Sorry; now I'm confused; the ANS doesn't control all involuntary (automatic or unconscious) functions? Sometimes reading I may miss something until I read it 4 or 5 times, so I'm going to go back and read again How do I find out what it doesn't control? I'm wondering that also, since I remember having problems around age 9.I'm trying to find the article I had about govt research and exercise connection. If my memory serves me [dont quote me lol] they said there was no reason to do a widespread study on how lack of exercise affected patients, all you had to do was look at history when women were kept in bed for this condition. Some of these women died, while many others recovered. No one understood where the problems came from. Is there research other than listed here about enzymes, being done of cures, what works & what doesn't?

What exactly does your post about Autism mean? Is it the parents fault genetically for children who develope Autism? Does that mean ALL parents who have children with Autism are at fault, are there other causes? What research backs up this theory? I'm really interested in this and would love to have some links to this being the cause.

Sorry, I'm just learning and still trying to figure out this puzzle of dysautonomia, so forgive me if I step on toes or ask stupid questions I would love answers too...I don't have POTS but NCS and OI. I can't find much on Cardiac - Neurologic related research, other than MVP. I have trace MVP and Mild Tricuspid regurgitation and LVH, along with other heart problems I have, so this interests me and I would like to find answers. I read this article and said wow! a dysautonomia center would be great, I don't think alot of doctors even understand DYS themselves and it would be wonderful to have a place to go that does understand it. Since Dysautonomia is the broad term that describes any disease or malfunction of the autonomic nervous system; isn't MVPS part of that umbrella? Is it me or does POTS seems to be more prevelant over other autonomic dysfunctions or is it just more known say than NCS or OI? I find it interesting that in the nineteenth and earlier twentieth centuries - [1869], a diagnosis that was almost solely given to women was called "Neurasthenia," or a "weak nervous system". I can't find anything that says Neurasthenia or Dysautonomia used to be called MVP, am I missing it? Or did I mix up posts lol that may be...it's one of those days for me. MVP was first described by John Brereton Barlow in 1966, and was subsequently termed mitral valve prolapse by J. Michael Criley and sometimes called Barlow's syndrome, Floppy valve syndrome. I do see MVP listed under Orthostatic Intolerance Syndrome section from the NDRF, and it says these conditions are among the least understood of the autonomic disorders. Since the ANS controls the involuntary bodily functions, such as heart rate, digestion, and breathing patterns; and every other part of our unconscious bodily functions; wouldn't it play a role in insulin control? The NDRF says Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. I find this interesting also - Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist. The type of specialist they are sent to usually depends on the predominant symptom they are experiencing, or on the symptom that most impresses the family doctor. However, whatever the diagnosis, a dysfunctional autonomic nervous system almost always plays a major part in causing the symptoms. There is no generally accepted set of criteria for diagnosing many forms of dysautonomia, just as there is no general agreement on their causes or on the precise mechanism that produces the autonomic imbalance, so there is no generally accepted approach to treatment. [How true is this I wonder?] Since the underlying cause of dysautonomia is not known, treatment is largely aimed at controlling our symptoms, and not at "curing" our problems. Which is why this article gave me a spark of interest with this type of center.

I have NCS and OI; along with some heart probs. I take Midodrine 3x a day and Bisoprolol at night for heart and Lexapro. It's ok; I don't think they control my symptoms as much as I would like but I'm on a wait and see type deal. I was just dx not long ago so they're having to find the right combos. I'm still dizzy and fainting but salt loading has helped alot; gatorade does nothing for me I've found. I know my heart is probably going to be affected by the salt loading and foods I eat/drink, but it's the only way I can stay upright. I do notice Midodrine wears off very quickly now vs 2 mths ago when I started them, so I'm looking for a new combo I think.

I've noticed this too; I don't have POTS though. I have NCS and OI and noticed in April when we went to the beach for a week heat intolerance and a huge decrease in sweating. At the time it didn't make much sense to me, but since my dx in August it makes alot of sense. Before this year, I did all of the housework & yardwork, even in the heat of the summer during the middle of the day in this swamp land of Central W FL (near Tampa). It seems weird to me now even walking from the car to the store makes me sick to my stomach and weak to where I feel like fainting right then. My memory is a bit foggy and trying to piece together my life and when my problems started has been tough. I remember at 9 fainting and being humilated to the point I didn't want anyone to know I was "different", in 8th & 9th grade during PE, I would faint and sometimes even hurt myself falling outside. I distinctly remember during my 9th grade dance being so dizzy I fainted during awards for calendar couple I won [ugh] embarassing I do know I've had bouts off & on of exercise intolerance; [not sure what it's called?] I'll go for periods and have no problems. For example Dec 2008 - May 2009 I had no problems, I was doing a walking/running interval training program, but sometime in May I got really severe and couldn't even walk around my house. Maybe it all has to do with each of our symptoms and what our triggers are?

Jana; I have NCS with cardioinhibitory and vasodepressor responses and a disorder of the ANS associated with OI. I was diagnosed in August 2009 after my cardiologist did alot of testing and sent me to an EP; he did a HuTT; cardiac MRI; Cardiac Cath, EPS & Ablation and then PM/ICD implant. During my HuTT, I passed out and my bp/hr went from 137/71 HR 109 to 0 and HR of 20 with no palpable pulse and during my EPS he triggered Long runs of polymorphic sustained VT in the outer wall of the RVOT; which made go into v-fib and have to be resuscitated 3 times. What's funny is when I started researching, I found this article by Dr. Grubb - Clinical Disorders of the Autonomic NervousSystem Associated With Orthostatic Intolerance so I recognized the named. Is this the same Dr. Grubb alot of people here are going to? I would love make an appt with him to get to the bottom of my problem and really understand the cardiac - neurologic connection I have. I developed non schemic Cardiomyopathy due to the amount of pvc's and problems I was having. I had a cardiac mri that was inconclusive. My cardiologist said all the symptoms are there for ARVD and HCM; and the MRI didn't rule it out - her words were "if it looks like a duck and quacks like a duck, then it probably is" I had to laugh at that and want to walk around quacking lol. She's letting my EP do the "formal" diagnosis in Dec after another interrogation and echo. I don't know the connection, but I have Left Ventricular Hypertrophy (LVH); so maybe I have a double whammy...ARVD and HCM...which is another question I haven't gotten answered, but will in Dec. Since I do have CM, I'm really wondering how salt loading is going to affect me; and how much it's going to make the CM worsened. I've read is once you develop symptoms such as shortness of breath or fatigue, you should restrict your intake of salt (sodium) to 2,000 to 3,000 mg per day. I've had SOB, Fatigue, CP, swelling in my legs sometimes so bad I can't even wear flipflops or walk; this has been over 5 years. Due to NCS and OI I have to take in at least 6,000 mg per day and it frightens me to think what it's doing to my heart and arteries. I'm still in the process of searching for answers; like since surgery I've had this really horrible time with muscle twitches, twinges, pains, pins & needles type of feeling and cannot tolerate some types of pressure like fingertips, I wake up sometimes at night with my body twitching or tremoring all over and it freaks me out - I showed my husband when it happened during the day and he said wow lol; nausea, headaches, left shoulder pain; neck pain .....[list goes on]

Sue I had a sleep study done ugh! I was sure I didn't have sleep apnea, but tests showed I had moderate OSA and they wanted me to do a follow up with the mask. When they put the masks on me, I went into vtach episodes that made me pass out. They said it wasn't from the air in the mask; probably anxiety ummm I don't think so - I've never had a problem with anxiety; but I know what went on in my body. They tried a few masks on, but didn't try the full one on so what I think happened is it stopped my air flow from the forced air in the mask. I couldn't breathe through my nose with the mask and as soon as I opened my mouth; wham - my heart started and I passed out. Now I'm leery to go back and even try a full mask, even though they said I need to. Ive heard the cpap helps alot of patients and some members of my icd forum have none of the problems I did with it, so I'm probably just a weird case, but good luck on the test and if you can tolerate the mask it would certainly help.

I would definitely have a monitor - you may never know what's going on unless you do. After it's done make sure you get your test results and go over them and ask questions if you have them. Just remember, the results are only for that particular day and if you're having a good day, you may need to have it redone if you think something else is going on. I had a holter in July and found all kinds of weird things going on in my tired old ticker I also learned I need to relax when driving, I had a major VT episode driving home lol If I didn't have the results, not sure I would believe I was having over 54,000 pvc's daily

For those of you who have trouble with washing your hair, have you ever tried dry or no rinse shampoo/conditioner? My youngest son has asthma and gets sick easily and it drives me nuts not to be able to wash his hair when he's sick so I use it. Clean Life Products - No Rinse Shampoo ($6.99) or Conditioner ($4.99) no water needed just apply, lather & towel dry. Word of caution - it does have a scent.

I'm not familiar with bicameral pacemaker but I have a dual chamber Telgien pacemaker/icd implanted due to malignant heart rhythms. I take ProAmitine (Midodrine) 3x daily and Zebeta (Bisoprolol) as well as Lexapro and don't have any problems. I have heart & ANS problems including NCS, as well as a few other things.

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I used to keep in close contact but have found that the answer is always the same...on to question 1... The only time I've gone to the doctor for acute pain was after I got a 2nd EP opinion. The dr gave me a BB that crashed my BP/HR so low even with shots of something to raise them; my bp stayed 70/40 and HR of 40 for 11 hours; so I told them I wanted out of jail and went home Before I had an ablation in Aug; I was having CP/SOB, fainting and 54,000 pvc's daily. I never went to the dr; just toughed it out, but now I wish I had gone. I have malignant heart rhythms & VT that go into V-fib and I had to have a pacemaker/icd implanted, non ischemic cardiomyopathy; NCS and some other things going on. Sometimes, ignoring symptoms can be dangerous, so I'm having to learn what to react to and what to just deal with. 2. How many times do your doctor's say go to the ER? Everytime The one time I called them, they told me to go to the ER 3. How many of you have given up on the ER? I have due to the cost, the lack of interest if it isn't a heart attack or appendicitis, and the massive waste of time and energy. Even with all my problems, I am hesitant to even think about going to the dr or ER 4. What do you recommend? I don't have any recommendations, just confused. If I felt before like I feel now all day everyday I would have immediately gone to the ER, now I'm desensitized knowing that they won't figure anything new out and just discharge me with a ginormous bill. As I get worse, I have to learn to cope with different symptoms and find what works to help each situation I am not only distrustful of ER's and their ability to help; but doctors in general. I've had my fill of doctor's who tell me things like lose weight and all your problems will go away instead of finding a real diagnosis. Another doctor who saw malignant heart rhythms and ignored them, and prescribed amphetimines instead of treating me; another doctor who totally ignored everything in my chart pointing to major health problems.

wow thanks for http://cognitivefun.net/ I try to do word puzzles and some others but this site is great...made my head hurt a bit though

Thanks for the tip on pth, I haven't had those tested, but going to ask my pcp about them next week when I go back. I've had my serum calcium tested a few times, but not ionized calcium. My heart problems are still unbelieveble to me, I knew I didn't feel great but figured one of the doctors who had my test results would tell me if the EKG's were abnormal. I've been living with this dangerous problem that I would have had corrected before if they had told me. I'm trying to learn as much as I can about what's wrong and how to treat it, but things like my dr not being in the office when I go in or my cardiologist not having time to answer questions makes it a bit hard

In 2003 I woke up one morning with excruiciating pain my left kidney; I started going to the bathroom 8-10 times a night and 30-50 times daily; this happened off & on for awhile and I went to see my dr. He did testing that came back normal but it's continued off & on since then; it almost seems as if I have kidney stones but didn't. I had a ton of different tests that showed I had an enlarged liver (dr said it was fatty liver due to high cholesterol but never did a chol. test). The dr told me to get off the couch, quit eating and lose weight and all my problems would stop. I kept having problems including nausea, stomach bloating, chest pains, sob, fatigue, fainting, dizziness. I was having female probs also; so I went to my gyn and he looked at my test results from my pcp and said I needed to have surgery. I had severe endometriosis, adenomyosis & hundreds of uterine polyps. My ins at that time refused a hysterectomy since I didn't have cancer, even though the only cure for adenomyosis was that. I changed pcp's the next year and went for my annual and to see if they could yield any answers, and nothing showed up but uti's or kidney infections, which they treated with Levaquin. In May 2007 I went to this pcp's weight loss clinic thinking losing weight would be the answer. He did a full workup ekg's blood work etc since I hadn't seen him in a few months, put me on Phentermine for 5-6 mths and I lost weight - 40+ lbs. Nothing changed; I still felt crappy and having episodes of fatigue, cp, sob; fainting/dizziness; kidney pain; still urinating a ton. I kept on exercising and in Dec 2008 I decided to try another dr. I told him my history and he said try to lose 25 more lbs to see if that helped. I took Phentermine again and within a week I was so sick I could barely move, the problems intensified so he switched meds; it was terrible; so I quit, and a week after I went off them I started feeling better. Until Dec 2008, all of my bloodwork was perfect, middle of the line for everything; except my sodium [138] and gfr [76] lvls were alittle low. Now my sodium is 135 and gfr was 59. We were looking for new health insurance in Jan 09 and we got United Healthcare, which has been a great plan and has been a lifesaver. We went to the beach for a week in April and I had no problems during that time even with all the stuff we did; when we came home it took me 2 or 3 days to even be able to walk I was hurting so much and fatigued so bad. It took until May and I started feeling better and started packing our house to move. In the middle of June 2009, I was cleaning my younger kids playroom, had a dizzy spell and slipped & fell breaking 2 small toes and hurt my left back area near my kidney. When my toes didn't heal and my back was still hurting, I decided to find a dr and go in. He did a full workup and asked if I had been having any other problems and if I was feeling ok. It wasn't my back; it was actually my heart. It felt like spasms of kidney stones because I was having pvc's every 2-3 beats constantly; he sent me to a cardiologist & EP. When I first saw the cardiologist and she went over my history she told me fainting is never ok - no other dr had ever told me that before; even though I told them I had passed out since I was 9. She also said some of the symptoms I was having were not heart related and appeared to be something else (I can't remember for the life of me) but neurologic related and by the time I'm 50 I would have to have someone take care of me. [insert brain fog here] I wasn't paying alot of attention then, because I really didn't think anything was wrong with me. I had a full cardiac workup and found out I was having 54,000 pvc's daily, v-tach; possible RBBB, Mild Tricuspid insuff., trace mvp and Mild Left Ventricular Hypertrophy. My EP scheduled me for a HUTT and EP Study & Ablation. During the ablation, he triggered some pvc's that were malignant and he suggested implanting a PM/ICD, but was unsure if it was due to cardiomyopathy or ARVD. The dr said based on my complex PVC's and ventricular tachycardia, he felt that the bigeminy could be decreasing my blood pressure, contribute to the syncopal episodes and cause enough ventricular dyssynchrony to cause cardiomyopathy. They implanted a Pacemaker/ICD and did testing - it showed I had developed Non-Ischemic Cardiomyopathy. I'm taking Zebeta (Bisoprolol) for the heart rythym issues. During my tilt testing, I started with BP 126/79 HR 77; at 20 min Nitroglycerin was given; my BP went to 137/71 HR 109. Within 4 min after nitro; I had a syncopal event with no palpable pulse and HR dropped precipitously to 20 bpm. My test results said - Classic symptoms of neurocardiogenic syncope with cardioinhibitory and vasodepressor responses; Sinus Bradycardia; and a disorder of The Autonomic Nervous System Associated With Orthostatic Intolerance, which they put me on (ProAmitine) Midodrine 3 x daily; 6,000+ mg of sodium, compression hose and a few other suggestions. There's alot of other random things that have been going on that made no sense until I started researching NCS & Dysautonomia. I've had some problems the past year with brain fog; mixing up words or not being able to think of simple words like chair; car etc. Things that used to be quite easy such as simple math are sometimes no longer easy. I've had muscle weakness; pains & spasms; moderate Sleep Apnea; heat intolerance and I noticed a decrease in sweating to almost non existent now. We live in FL and up until this year, I did all of the yard work; during the heat of the day even and working outside 3-5 days a week, now I can't even be outside going into the stores without feeling weak & nauseated. I'm not sure if this is muscle or nerve related - my husband's been doing leg massage hoping to help with blood pooling, but it hurts so much I almost cry; even a light massage - massage with palms doesn't hurt as much, but if he uses his fingers it almost sends me through the roof. This is a new thing in past couple of months and I've never had a problem like this before. I had an EEG done to check for Epilepsy & blood supply problems, but I haven't been back to the dr to see the results. Does any of this make sense to anyone? Is this just NCS/Dysautonomia related? Sorry for the extensive post, I really need to find answers to what's wrong with me or what path to take for which dr and what to ask so I can write it all down incase it's one of those days for me. Thanks for listening & any help is appreciated.

Thanks I've been absorbing as much as I can the past 2 months and found this site a few weeks ago. There's so many weird things going on with me I don't underdstand it all. My doctor can tell me all they can; but can't really understand what's going on unless they've felt it. So many posts I've read here I can relate to and it's good to know I'm not alone.

Hello all and thanks to Nina for the authorization. My name is Lisa and I'm a 42 yr old mom of 4, I'm married to a wonderfully aggravating man that I couldn't live without. I'm searching for answers to a possible cause or diagnosis, and really hoping things I've been experiencing sound familiar. I just wanted to say hi and introduce myself and get my thoughts in order to post about me