janineerrn

Hi Everyone,Hopeit was a good day! I am sorry to vent and then ask a questionbut I am braindead and tired and so much is going on. Fighting for FMLA at work because my1 year date was May 25 and i went out on med leave on 3/19. I worked oer 1250 hours and I was still receiving company benefits past my med leave date (I thinkthis is the last month of both STD and Med insurance if i dont win this fight) = No money. Youknow how much my meds cost, tryingto get the 3 month mail order refill thing done but my meds are written by so many different doctors and one wont write one RX another wont write the others RX and they all want me to come in to visit for refills and I have too keep up with side effects and all the copays for each doc to get an RX then to get a 3 month refill, and then just getting to the doctors not to mention I may not hae insurance August 1st. Applying for social security, cant find one doc to help do all the medical documentation, trying to get all evaluations in b4 insurance runs out. Still not sure what I need to prove to SSI, they can come live with me for a week. Trying to keep medical records together, and get them, because when i was at Duke they kept my copies instead of getting thier own so now Im gathering 3-4 years worth of medical records. Trying to keep up with medical miles and out of pocket expenses for taxes. Trying to keep household together (hah) at least hubby is starting to see the light after a lot of conflict and role changes. At least my 19 year old daughter painted my toe nails purple for me. Im almost in a size 10 was wearing a 14 last year. Thank God for thrift stores or Id be wearing me some suspenders. Ok Im sorry, I could go on but Ill spare you, most of you know the drill. The question, Please give me some good links to excellent info on NMH POTS that I can print out and give my doc. Im going back to the adult cardiologist. The first cariologist diagnosed me but says he cant do anything else for me. My family doc, whom I love, cant really treat me she is family practice. The pediatric cardiologist who knows POTS and understands, and cares cant help me with disability. This is the cardiologist i went to who said she never heard of an autonomic disorder being so severe. I really like her but want her to understand. I am going to suggest she call Dr. Boris the pedi cardio, but Id like to give her written info too. Thanks All Im kinda high strung and anxious right now.

Janine Im 39 DX: NMH, POTS Sympotms bad at 35, worked up for everything, pheo, gastric carcinoid, seizures, etc.. DX with NMH and POTS this year. I live on top of a mountain in Wester North Carolina USA Worst symptoms are "episodes" lasting about an hour, chest pain, nausea, sweaty, feeling of impending doom, headache, stomach cramps, vomiting, diarrhea, confusion. Ending with complete exhaustion. Symptoms at best: I have constant nausea and leg cramps, Im loosing weight, take 2 bites then Im full. Very tired most of the time, cant take a hot shower or go out in heat. Daily dizziness and my memory is foggy, cont concentrate. Meds that didnt work, phenergan, zofran, compazine, Toprol XL, Wellbutrin, Miodrine, reglan, Im sure there are more cant think of them. Meds that work: Inderal LA, Lexapro, Synthroid, Florinef, Klonopin, Valium, Marinol, Nexium, Liquid mineral supplement, B complex and a multi vitamin, My big thing is anxiety control, yoga, meditating, not freaking out during and episode. And keeping my mind active by playing fast card games online and doing research online POTS related.

Hi, I was reading the posts on chest pain...... I am having chest pain right now, sharp stabbing, my heart rate is up to 118 (not bad). I know whats coming, hmmm. Thought it may be an interesting thing to share with you, Ill keep typing through the upcoming dreaded POTS attack. Let me know if anyone else goes through this. BP 72/56 hr up to 122 with a pc here and there, sharp chest pain is easing off. Nausea ugh. Skin crawling up the back of my neck, cold but getting sweaty. Hands and feet cold. I can deal with this logically.... Cardo told me sharp chest pain is from drop in BP and the left ventricle pumps to compensate which can set off a spasm and cause the pain, HR also goes up to compensate. In POTS people the autonomic nervous system causes the drop in pressure and it is also responsible for over reacting to the drop releasing adrenalin. So what do I know. The adrenalin is released into my blood. My body thinks its having a crisis (my mind is saying a lot of cuss words). All my blood is being shunted from vital areas thats why my hands and feet are cold. Blood is being shunted away from my kidneys and GI system. Oooh the feeling of impending doom, I am going to die, dizzy, shaking, pale, sweating, I would run for a Klonopin but I can get out of the chair right now. (daughter brought me one). HR136 no pvcs, Did I mention nausea. Just having an adrenalin rush with a dysfunctional autonomic nerous system to make it worse. UGH stomach cramps, nausea, feel like Im going to pass out. HEADACHE. I got to get up and walk, nervous. Every doc who told me I have a psychological problem or menopause with anxiety can kiss my *** right now.!! OK HR down to 112 bp 90/72 occaisional pvcs. Leg cramps. Headache, nausea ( omited til I had dry heaves) Calmer . Hot. Whats happening to me now. The adrenalin is going out of my blood stream. Blood is returning to limbs , GI, Kidneys. My feet are still numb, still nausea, (I just got back from the bathroom with diarrhea) I feel like I just ran a marathon, tired, sick, drained. That was the past 55 minutes of my life. Anyone else experience similar? Can you add to what is happening to our bodies? Got to go to bed. Hope you all feel well. Janine

Ha, Those of us who would rather pass out in Walmart are in second place. Janine

I hae the opposite problem in both areas. But when I have bad episodes I have diarrhea sometime having to crawl to the bathroom. yada yada. Since you husband is a man he can use a condom catheter and leg bag while at work to avoid embarrassment for the urinary incontinence, its an alternative to wearing adult diapers. Does he have enough warning with the bowel incontinence? You can look into a bowel traing program but Im not sure if that will work %100 because its prob the autonomic system and we all know how difficult that is to control. Good Luck, Janine

Hi Everyone, Thanks for the support. I feel like poop. Physically just tired, the fluid helped. But I am in the biggest brain fog since i passed out. Bruised my shoulder, but its ok. We should do a poll, about walmart episodes. Thanks again for letting me know Im not alone... Hope everyone had a good day. Peace Janine

Hi All, Just have to tell you about my day.... Went to Walmart to get dog food and passed out cold. No warning this time. Talk about a fiasco. EMS, people staring at me. (even wet my pants ). I refused to go to the hospital, my daughter picked me up. Paramedic said my bp was 80/60 pulse 118. I told him that was good for me. He looked at me like I was a nut. The good thing about it was I got a liter of saline in the back of an ambulance in walmart parking lot, feel great now, lol They had the iv in with a bag of normal saline hanging and I turned up the flow when they werent looking. (gonna have to pay for the whole bag anyway). NEVER going back to walmart!! Peace All Janine

Hi, Just wanted to say that you should watch it with the chiari diagnosis. MRI's thet show herniated cerebellar tonsils can be normal the next day. They move. One of the reasons your neck may be so sensitive is because if you have an autonomic nervous system disorder all your nerves enter and exit from the base of your skull/top of your spine. Make sure your chiro knows what you have and understands it. Peace Janine

Hi again, Just thought of this. If you have a standing order for iv saline you should be able to call up the outpatient surgery dept of the hospital and tell them you have a prn order for iv saline (dont go into detail, they dont need details they only need the order), and try to set something up with them. I know in the US the outpatient surgery dept does iv antibiotics, blood transfusions, iv therapy etc... If that doesnt work call the head of the ER and tell him/her that you have a standing order for IV saline PRN and would like to ber able to get it without a hassle. Janine

Hi Ernie, Why wont your doc order a pic line? You shouldnt do IV's on your own, as frequently as you need them, you would tear up your veins. I wish i was there i would do it for you. You can order saline by the case with a doctors order from a medical supply company in the US. I have saline for my horses i purchased through an online vet supply. Its the same stuff as in the hospital, same packaging and everything. At the very least you should get your doc to give you a liter of saline in his office when you need it. Im sorry your healthcare system is the way it is. I just went to a specialist who claimed to know pots and she told me she never heard of a case as severe as mine. So I understand the fustration. Wish i could be of more help. Peace Janine

Hi Christine, My screen name should be the queen of nausea. I have like chronic morning sickness (best way to describe it), I get nausea when I eat or drink anything, and when I have a bad "episode" I get severe nausea and vomiting. I have tried: phenergan, zofran, compazine, reglan, and marinol. I have lost 41 pounds over the past 18 months primarily because of nausea and not eating well. I put lots of stuff through a juicer now and add protien powder. At least it stays down. You are not alone. I hope you find something to help with your nausea. Peace Janine

Hi Ernie, Im sorry you had to do the Terrible Torture Test again. They make me sick for days. I hope all is getting better with you. Peace Janine

Pooh, Im sorry your feeling so fatigued. I get like that often. The slightest thing will set if off. Are you keeping a food/activity journal. I have been doing that for years just to see whats going on with myself. Sounds funny but when you have 2 or 3 years of a journal to look at you can see patterns or pick out things that you wouldnt normally notice. I started Yoga a few months ago, I got a tape. It was really hard to stick with at first. Sometimes I would do a position for like 3 minutes then just lay down on the rug and go to sleep. I find now that Im getting to the mind body thing yoga is all about. It is helping me with fatigue and with anxiety. I have to tell you my yoga story. My friend jenn and I took a yoga class a few years ago. We would go with our mats and our books and we were real into it. The instructor was this ancient man. He was like rubber band man. We would watch him with complete amazement. He would wear these little yoga shorts and when he did certain positions well his (stuff) would fall out. OMG me and jenn would fall over and just roll laughing. We couldnt take it anymore and had to quit the class. I just couldnt bring myself to tell the man to tuck it in. Cheer up Pooh, the slump will end. Cant you just call your doc and see if you could go to the lab or something just for a blood draw, much better than an actual appt. Peace Janine

Thanks all, VERY good info! It helps a lot. I found a neurologist through my original cardiologist who will see me (has already reviewed my records). Of course he is out of my insurance network and wants $600.00 up front. I will have to file and get back %60 of whatever my insurance company feels is customary and reasonable [HAHA $2.00!! :-) ] Sadly, I am selling my husbands horse to catch up on some bills and pay the neuro fee. He doesnt ride her much but we had her so long she is my sweety. They would have to kill me to take my horse away even if I cant ride, she is my friend and one of the few things I can still enjoy is sitting in the shade brushing her and talking to her. I started the online SSI form, have to carefully word it because they only give you a 500 character limit to type how it affects your daily life. I also called everywhere I have ever been (medically) and requested that my records be sent to me. My family doc extended my short term until Aug 1st. So I need to get it together quick. You know anxiety is part of the progression of this disorder, then having episodes where you feel like you are going to die adds to it, then to top it all off you have to worry about surviving. .......Klonopin anyone? Thanks for the support ALL of you. Peace Janine

Thanks All, Ugh, just dealing with getting up in the morning and getting my pills down is hard these days. Now I have to fight with insurance companies and the government. The greatest thing about this site is that you all are so helpful with the info. TYVM!! The second greatest is that when I have a really weird symptom I can come on to this message board and find someone with something weirder. and then I dont feel so bad. Its a double Klonopin night for me, maybe Ill sleep for more than 4 hours. Night All, and thanks. Peace Janine

Thanks Pooh, She told me she didnt have enough info to justify continuing my short term disability. Obviously she didnt get all my med records because my chart was way too thin. ( I used to hae every copy of every med document, test ect... but when I went to Duke they took the pile to copy and i didnt get it back). Im calling my family doc who originally wrote me out of work in the morning. Im going to ask her to extend my leave, do the paperwork etc.. for short term since it was her offices fault my med records didnt get there. As far as long term goes, I need to find a doc who does it for both private disability and social security. I have no clue who to go to. Thanks Janine

Thanks fo the support Carmen, How did you get the medical necessity for disability? Was it hard to get? Thats basically what I need. i hae all the tests and documentation. I just need to find out what doc to go to that does the disability paperwork. I hope your check comes soon!!!! Peace Janine

Hi All, I went to the appointment I have been waiting for for months with a cardio specialist. It was a waste of time. She told me I could go back to work and wrote restrictions, no lifting, breaks every three hours.( Im sure my patients would love to see me crawling around on the floor vomiting. ) Thats it. And she gave me a RX for Lasix. (does she want to kill me, my bp was 86/54 and ive lost 10 more pounds). Im so upset. I am currently on short term disability but my family doc doesnt do long term, the only truely understanding doc I have seen, a pediatric cardiologist who knows POTS and Dr Grubb, doesnt do disability at all. Im running out of time on my leave from work. I have to get a doc to do the long term before I get fired so I can keep my private long term disability benefits. So the search is on, gotta find a doc to do my long term disability b4 I wind up living in a tent. Anyone been through this? Any suggestions? Thanks and Peace Janine

Hi Dayna, Failing a TTT is not a definitive diagnosis for POTS or any autonomic disorders, There are many reasons and underlying causes for failing a TTT. I have done a lot of reading and research over the years and have had tons of tests. It took a while to actually name what I have. There are just so many symptoms and everyone doesnt have the same exact symptoms or treatment plan. Discuss it with your doctor. I hope you have a good one. Get a good work up. Have you had MRI's, blood tests etc...? My doc took the approach of ruling out many many things. I know i dont have a lot of things. I guess thats good. There are also many other illnesses and conditions that have similar symnptoms to autonomic disorders and there are also several different autonomic disorders. I look back now, knowing I have NMH and POTS and I realize i have had it for years. The symptoms years ago were not as regular or intense. I had low bp, urinary retention, headaches, nausea, would pass out occaisionally (just to freak out my husband according to him). But now I guess its taken a toll on my body or maybe my lifestyle (high stress job, overtime, training horses, diet etc...) made my disorder worse. Who knows. I take one day at a time right now. I know a lot of us here are fustrated with our limitaions. Totally sick of doctors and tests and meds. Who knows why we are on this path. The best we can do is deal with it any way we can and support eachother. Peace Janine

WAY TO GO!!! you make beautiful children! I wish you all the love, joy, and health in the world. Peace, Janine

I make chicken boullion, high sodium of course. Lay down. And most important tell someone my bp is low and check on me. My daughter takes my BP and makes me broth. Hope you feel better Janine

Julie, You are not crazy. The chiari herniation is constantly changing and can be different with each mri. Sometimes normal, sometimes ectopic. This is true for everyone. Some people just have it to a degree where they are symptomatic. I work in a hospital with a doctor that treats chiari malformations and know quite a bit about it. Ive taken care of patiens in ICU post op after brain surgery to fix bad malformations. As your cerebellar tonsils move (which is a chiari malformation) you could be symptomatic and feeling bad, when they move back to a normal place you may feel good. The cervical stenosis is not related to chiari. I hope you feel better. Janine

Hello All, I have been staring at my bottle of florinef for days now. I do this with every new med. Like most of us, I am very sensitive to medications, a phenergan puts me in a coma for 2 days. I shouldnt have doubts about taking a med that is suposed to help, right? The real question is when should I start it? only 0.05mg to start. But I just woke up with heart palps and sweating ( been feeling great for a few days) so now im on the downswing, Ill feel crappy for a few days now. Should I take the florinef now or wait until I feel better? What are your experiences with this med? Will i swell up with edema and got nuts in a year? What are your experiences with side effects and do they go away after a few days, weeks, etc... Any advice/comments welcome and appreciated. Peace Janine

Dayna, The lexapro helped with headaches and a lot of other things too. Ill see if I can find the article I read about lexapro and POTS. You should really talk to your doc about doing some kind of gradual increase. I had strange crawling skin sensations and many other side effects but I was encourage to hang in there with the promise that it would eventaully help and it did. Its was hard. But I was so deep in a hole at the time I would have done anything. It took a few months but again, I can do without it now. Worth a shot.... Janine

This is a nice topic! I have learned that i have more inner strength than I thought I had. Leaving work and going on disability has given me more time to be with my grandchildren. ( I swear my 1year old grandsons smile does me more good than any of the meds Im on). I realized my career consumed so much of my life and now I just enjoy the flowers and sunsets. Ive learned to stop and smell the roses. I just applied for a masters program hoping to stay on the better side of POTS and get into research. I learned I can plant my garden at night when its cool outside and Im getting to meet all the night time creaters that nibble my veggies. And the most positive thing is that I really appreciate being alive and thank God I can still live. Peace Janine