pamela

Good job ! Very happy for you to have a positive day! Enjoy and many more happy wishes to you!

IVabradine sounds like it concentrates on the hearts role in maintaining rate. I think many of us experience a low BP. If the Ht RT does not increase enough to get BP up and blood to our brain and such than we are still comprimised. My whole system isn't right. When taking a Beta blocker my heart rate slowed down until I stood up and my BP was up to normal and higher (when lying down), but as soon as I stood up the ht rt jumped up and the BP dropped further faster.. A pill that balances all the systems would be great but its going to have to start at the control center for our bodies total function. Once the brain is sending the right signals then we will get a improvement. However, many of us have had to deal with this Dysautomia for so long that we have substained damage to other our organs. Most of that damage cannot be reversed unless its removed or fixed surgically. We will have to continue on other meds to alleviate the other symptoms. I hate to be negative. I just hate pills and magic cure alls. I am on so many meds just like the rest of you all. I hate them and would love to throw them in the toilet. There is hope and I have faith that soon they may have a drug that stops all of this. I pray that it is soon and that many DR's start looking into all of their patients symptoms so that they can catch this stuff before it gets so bad like it is any many of us.

Shower in the sitting down position, and don't try to boil yourself in tub or shower. That is one thing I miss so much! As soon as I get company that will watch the little one and that I am comfortable with them helping out of the tub, I go soak away the stress (while enjoying cold water or gator aid in a glass)

Try to relax and stay mentally busy. Keep phone on hand with important numbers and know your limitations. I am home with a baby 12-14 hours a day mon-fri and now more with spouse deployed. I try to call family or friend by noon everyday. That way if (my especially) no one has heard from me then someone will call. Since the only place I go where I have to drive is Food lion, target or Dr appt then I am always back in a hour. I always let a neighbor or My Mom know if I plan to go for a walk. They know I will be back in 20-30 min and I check back in as soon as I return. Well, Baby is up! Got to Go Pam

I noticed the same symptoms and I told the doc's while I was at the hosp. (this was a dy or two before my POTS tests were diagnosed). They also did a abdomen CT/MRI and both were clear andunremarkable. I a gree about the blood pooling thing. Remention it to your doc. My holter monitor picked up the increase in BP at times when my abdomen was compressed. Pam

GracefulPrinsess, Hi! Just red your info. You are in Charlotte? Me too! Would you like to email me at Pskildum@bellsouth .net? We could be neighbors. Who's your doc? Where do you go for treatment? Do you have support people? Any extra support people I can borrow? Seriously though, right now its just me and my 1.5yr old girl. My husband is off playing army in GA for 3mos. My sis is here sometimes but she is 24, lives and works 30 min away, and the rest of my family/friends are in Stateville where we are from. I feel excited to know that there is somone in the area that can relate to what I am going through. I hate that we are trying to cope with this/theese disorders, but we aren't alone. Thank God. Any how please email privately or this way. And anyone else feel free to do the same. P.S. Stay away from the new mall. I went last night and I feel like poop still. It is packed, loud (music and the talking) and you have to park forever away. Stores were great and some were totally new to me. I ll go back when it slows down and I feel better. PAmea

Yeh, I think its the metadtate. Sinc the drug is cns stimulant it may be messing up my hormones. I know that it started about the same time as I began the medacine. O.k. I think it could have.... I do acyually know that the bumps are un rresponsive to benzoylperoxide or salicyitic acid. They seem more red and larger than normal after trying those products.. Normally Neutrogenia soap clears my acne real fast but not this time. My sis and I went and got some unchemically like stuff from a place in Charlotte. After one use I am less broke out but pink from the tight skin. THe whole product line is called Miriacle II. It has a GP soap without chems, and a all purpose Neutrilizer for internal/external use. No poisons or toxins, No animal testing. I used the soap on my dane first for a few puppy pimples and they were less red and swollen in 10min. So far no reactions. I have to be careful on what goes in my syatem like everyone else (sorry about the spelling mistakes) but anything and everything effects my clotting factors. THen my Hemotologist gets grumpy and gives me shots or makes me fo the hospital. My normal Doc says..mabe reaction to meds, to health issues, to life in general. Would you like a prescription to take??? No thanks doc I would just forget to take it. HA HA. Any ways, If the doc has no clue then I will follow my grannies advice and try" good old calamine lotion and milk of magnesia. Because if your tummy is not happy then neither will your skin be." Says the 90 year old Mary Kay/Show horse owner. Its a wonder she has'nt put me out of my misery yet. LAter.. Pamela

You should be o.k. as long as your aren't allergic to eggs,diabetic,asthmatic, or prone to panic of small spaces,needles etcc.. I have had lots of mri's Ct's with and without die. As an asthmatic I wheeze a little. They give me benadryl and a breathing treatment first. On a pecular note the first unexplained sycope episode for me was in 1998. I had been cashiering at home depot and felt a little shakey, then dizzy. I bent my knees a cople of time to make sure they weren't locked, turned to help the next customer and BAM!! On the floor I was. They said I was out for 2-min. Upon exam they said I was a little warm and tachycardic. They started an I V and then the hospital said I should get a Spinal Tap. Trust me the MRI is a piece of cake. If you need a spinal, DO NOT MOVE FOR 2-3 hours at least. Do not go home and perform usual activities, BE STILL!! Get an IV for fluids and then you should be o.k. and not get a spinal hematoma or spinal Migraine .. Any way It will be o.k. Ask for benadryl and a valium if you are nervous about your reaction to dye. Pam

After my diagnosis I saw my Primary care ohys who is also a internist. When he was looking through his meds online to treat my condition he laughed at the Saline IV and said tha would be to inconvienant. Well, I think it would be more convienant then having to go to the ER, Stay in the hospital, be monitored, wear a holter, or ending up on the floor. After trying this methyphenadate and feeling its sde affects,the nadolol , florinef etc.. if buliding the blood volume be IV solutions is a whole lot easier than all of the side effects of the above meds. Besides when you drink fluids they have to go through out digestive system before entering the blood stream and our systems are so screwed up that adding fluid directly seems elementary.

Yep! Miralax helps, water, movement, fiber, smaller meals, pick one ! But definetly speak to your doc.. Constipation can effect your symptoms and make your POTS worse and vice versa.

Thanks! I am going to Email my husband the ndrf handbook address. He is in Ga and I am in NC. He complained about being out of the loop on this stuff so I will pass the info to him. Again, thanks. Also I will send the info to th military docs so they can brush up on all of this. They aren't to up to date an Dysatonomia or stuff. They have a habbit of finding your worse symptom then treating that. Luckily We are here in the civillian world for a year but then its back to the military hosp. for care..

Does DINET or any other group out there have a support system for the friends and family of all of us. I know half my family treats me like an piece of porcelin, and many are aggrevated with the wasy I feel and they don't know how to help or be encouraging. IE The husband. He is worried but confused as to why I feel so bad. Then there are times when he doesn't know just how bad I really feel and he gets so discouraged and frightened when I "crash". He is frustrated at the dr's and with the lack of info out there on Autonomic disorders and such like POTS,OI and neurogenic Syncope Any Idea where they could get support and more info w/o it coming from me. When I try to discuss it with family and friends I often get blank looks and the feeling that they want to help, but just don't know how.

Thanks for the encouragement. Thank God for the one Dr or Nurse who will stay a little later, dig a little deeper and listen a little longer. Good wishes too you.

Thank you guys for the replies. I am going with the blood pooling too. I wear the hose every once in while but I can't if the coumidin has my blood to thin, I get bad bruises and busted blood vessels my cappilarries in the legs are looking like I worked 16hrs a day on concrete for 20 years but.. Most of the time the legs work pretty good. I will have hte cardiologist run some diagnostics on my circulation. I am wondering if the acne is a reaction to the metadate or if it's actually acne?? Thanks for the support. In two days this site has made me feel so much better. Finally I am not alone or weird and now I know that I am not a hypachondriac. Some dr's were reluctant to believe my symptoms until they saw my tilt test and ran some more blood work. I am thank ful for the communication among us new friends and we will all get through this together Pamela

1.Pamela 2. 32 3.POTS,OI,systolic murmur,protein S def with inadequate prolongation ao protine (Blood to thick and to fast to clot) PE DVT'S,Allrfies, asthma ,Dyspnea, hypotension,Hypokalemia,Hypovalemia,migraines,labile blood sugars,diverticulitus,chronic const, anxiety 4POTS diag in May 2005 after MI due to all the hypo's..age 32 Sympatamatic forever. 5.NC 6.At worst.. Tachy over 150,dizzy to blacking out when standing, dizzy and tachy at the slightest change of position, dry mouth and thirst, confusion,slurred speech,exhaustion, headache for days w/o any relief,sleepy then bam! asleep! loss of memory, Feeling like I am somewhere over the rainbow w/o red slippers, loss of co-ord,balance,hypersensitivity to all stimuli,can't sleep,BP below 80/60,... chest pain 7.At best .. a little tachy all the time due to meds 100-125bpm, fatigue, achey lgs and arms, new goose bumps for no reason, sudden dizzyness that goes awy and sudden syncope without warning. Dyslexic typing inability to concentrate and remember the little things. Fluxuations in body temp. 8.Meds that heven't worked yet.. Florinef weighht and BP went up real fast by 15lbs in 48hrs and bp up to145/60 at second dose,nadolol..dropped BP to 80/40 at check up,lexapro 9.Currently on Metadate to elevate BP and improve concentration and energy. It so far has only raised my BP a little, but has regulated my BP drops to where if they do drop they recover faster. However, it aggrevates other symptoms of POTS Klor-Con(for hypokalemia), albeuterol,(as needed) and spiriva, Coumadin 15mg-20mg,Xanax supposedli everday 1mg, but using as needed .and I am forgetting something..claritin. Right now it a bad phase and I feel screwed up so .Drinking Gator aid and working on cleaning up my diet. 10.No good doc yet but this site is arming me to help my internist and I get to visit my cardiologist on the 20th. in Matthews NC. Hopefully he will have solutions. Right now I would like a little IV saline and a nap for 20 hours or so.

Just wondering.. My extrmities seem more dry and itchy. My legs get that tight blue look with littly pale areas when standing then they itch. However my face and shoulder are shwing an increase in acne and redness?? Any Ideas, also my scalp, arms and legs are getting frequent goose bump/tingles. What's going on. I know its part of all of this in some way, just whisch disorder could it be. We know I have pots, hypovalemia,hypokalemia,allergies, restless leg/arm syndrome,general anxiety and diverticulitis with constipation (Probably the blood pooling in stomache causing that problem)> Meds are fun Metadate(rittalin) for the POTS (elevates my BP, but it is increasing tachy's but not the severityt of it), Coumadin (Low protein s disorder..clot real fast),zanax as needed (dropping off a 2yr stint on lexapro)klorcon(Pottasium supp)it helps with chest pain due to tachyness, claritin,and nasal chort. Getting into the Gatoraid again. I was POTS symptomatic 8 yrs ago in the army and they didn't have this disorder so I was always treated for Dehydration based on the vital sign chang from supine to standing.. Thanks for help and sorry about rambiling..

Hi there Sunfish, I a so proud of you for trying. To me that to courage, strenghth, faith, and stubborness too(I can relate to being hard headed). I had to give up my favorite job and hobby. I managed a kennel full of prescious dags and kitties that knew me, loved me and needed me for there comfort. I was a ballroom instructor, then I noticed that spinnin and turning was giving me trouble. That to had to go. Going to school, walking to class,standing then sitting then up again people take for granted. We all understand the difficulties that you are going through. You knew that it wa going to be hard yet you did it anyway. Way to Go!!! So you have to cut back.. Don't give up totally try online courses,look abd don't be afraid to ask for assistance and do not ever be ashamed. These disorders aren't well known or as treatable because of whatever reasons... I do know that if you do not take care of yourself things get worse. I learned that this week from this site. Thank You all!! I just wanted to say these things to you. I know we are young and should be so healthy and happy, but I feel about 95 somedays. You aren't alone and I will remember you in my prayers. Thanks for being a encouragement to me Pamela

the urine output at night is a good question, ihave spells where for days I go 4 or more times at night. But the brain fog is pretty important to. Mine is getting worse my typing skills have went to the can, I misspell writing and even have rouble spelling out loud. I was always the spelling bee champ and have been pretty good at it as an adult. I forget my meds, where I put things, where I am going... Another good question is if we are all so tired why can't we rest and sleep? My theory is staying awake is my body's way of fighting the dangerous BP drops. I have heard that inadequate rest can lead to loss of motor skills, balance, memory loss etc.. and my experience in the military has made me a believer. My symptoms are worse now than before I was diagnosed in May, the summer was rough but the last 3 weeks have really been bad. Good luck in your endeavor and I hope all goes well pam

Where can you fing these heart reat monitors and are they real expensive? We are on a budjet now that I am home, and we have a military fixed income. Anyone have TRICARE PRIME INS or Military Dr's?

Occasionaly I have noticed this. When I laugh to hard or cough I seem to get a real good aerobic workout. I attributed it to my Asthma but maybe it is both .

I do not have a threshhold or certain # where I will call the Dr. I do't have a home BP monitor yet but I need one. However, if I have a sudden drastic change in the way I am feeling I get concerned. I would make sure to know the signs and symptoms of MI,stroke and or heartattack. I know I have mild symptoms that mock those of the above, but a sudden change I.E. like headache,palps,confusion,loss of vision or one sided paralysis etc..or nausea,chest pain,irregular ht rate all together more severe than a bad pots day and its best to go to the ER. Thats how I was dignosed. My POTS symptoms sent me to the hospital, and I had aMIcaused by elecotrlyte disturbances, low Blood volume and when things calmed down I had a tilt test that caused the same symptoms and they diagnosed me with POTS. So I was glad for a diagnosis after the year long syncope,weakness and palpitations but I wish that my DR's would have taken me seriousl. Now I have had a MI at 32 and some damage to the heart that could have been prevented.

My Bp is low normally all my life and a littly tachy all my life for my age. Resting Hr for me is 75-105,and sleeping BP is 60/40 ish, and my O2 readings around 90% whne I am resting in the wonderful Hospital. I of course get a nurse shaking me awake telling me to sit up, roll over, or take a few deep breaths. During my tt in May my bp went from 97/50 hr 70after 10 min up i wa down to 68/18 and 125bpm. At 13 min they layed me back down, and I came around 5 min later. My question is .. What magic pill will slightly elevate your BP, lower your standing pulse and give me back a little enegy without being on Rittalin (nadol made me pass out, florinef caused fluid gain of 10 lbs in 2 days and heart problems(fluid around) witj even lower pottasium levels. Help! Don't evenask about my energy levels. They only exsist with the Rittalin then I get severe fatigue . My 18month old exhaust me! Sorry to be so whiney.

I have had chest pains from a pressure feeling, sharpe sudden pains and a pain I can say that is worse than anything ever beause my body said this aint right. Luckily that pain happened at the hospital while I was being treated for Syncope. I ended up having a inferior MI, Hypokalemia, and way off blood work and echo's. I knew that I had a murmur, and some Tachy episodes before but this was wose. A tilt test done in CCU said OI due to hypovalemia. That I would recover and was sent home. @8 hours later I ws admtted again this time a tilt table test showed diagnosed me with POTS. Needless to say the chest pain tells you that something in your system is not right and I feel that the mildest POTS symptoms have the milder CP's and when your Tachycardia and BP get to out of whack the Chest Pain means E.R. ASAP I am 32 with a Blood disorder that causes me to clot, asthmatic, reaccurent hyperglycemia episodes, hypkalemic (low Pottasium) anxiety (dah) and pots

I hate to say it, but I know what you are talking about. Like having medicine head but worse. I have not figured it out yet either. I try caffine and that works but I feel the crash worse later. I am going to try drinking ice cold water as soon as the fuzzyiness starts and in the morning before taking any meds. The tiredness is so bad that I get confused and can't remember if I took any meds. Pamela