janineerrn

Dayna, Im sorry your at the place where your at. I wish I could help, been there myself. I also couldnt tolorate antidepressants. You should know by now that POTS affects your nerves, which includes the brain. Leaving us all with the eventual depression from the actual syndrome (not just the stress and life issues we deal with) From a POTS standpoint an antidepressant helps. I know you say your not open to them and you cant tolorate them but, talk to your doctor about lexapro. I couldnt tolorate any of them either, I tried many and had horrible side effects. So this is what my doctor did for me. Started me on a half of a lexapro everyother day and gradually over weeks and months increased the dose. 2 weeks on 5mg every other day, then 2 weeks on 5 mg daily, then 1 month on 5 mg every other day and 10mg on opposite days ect... I can now take 20mg a day with no side effects and even feel horrible if I run out or miss a dose. I turn into a crying baby with out them. Lexapro is a milder form of celexa. It has the least amount of side effects of all the antidepressants and my doc says it helps the actual POTS and would have put me on it even if I was not depressed because it helps stimulate the nerves that are affected bty POTS. I have to admit that starting the medication did 2 things. 1) I despise the stigma of being on an antidepressant. 2) I did feel a little strange on the med for the first 5 or 6 weeks. But now after 1 year on it I cant do without it. I know your not me, but at least try and talk to your doctor. The doctor that knows the most about your POTS. He can explain why the ssri helps in POTS. I send you a big hug and hope you can find some relief from the stress in your life and know your not alone. Peace Janine

Hi, Lots of good advice. I would like to tell you that I take vitamins and minerals in liquid form. Made from all natural food sources. I couldnt tolorate regular drug store vits and mins. The liquid forms absorb very easily, are very concentrated so you dont need to take much. They ahve helped me a lot. Esp. the minerals. I also keep plenty of organic juices in my frige. Green Godess, protien and carrot. They can be found in the grocery store. I dont have the energy to juice. Even though the fresh stuff is better, I find the bottles stuff from the grocery refrigerated/produce/section to be the next best thing. Peace Janine

I am so sorry Ernie. My prayers are with you. Im sure whatever decision you make will be the right one for you. If there is anything I can do let me know. Peace Janine

Hi, My Cardiologist told me he would start me on the generic and see how I did. If it helped he would switch me to the Proamitine. For some reason the original drug works better. Cant tell you why though. I do know that people have bad reactions to this medication (like me). I guess we all tolorate medications differently. Im glad it works for you. Peace and prayers Janine

I live in the mountains of Western North Carolina. Grew up in NJ. Janinie

Hi Sue, Just wanted to let you know this happens to me all the time. My hands and feet and lips turn blue. My doc says its reynauds (sp) syndrome. My hands and feet are always cold. I usually just move my arms and legs around or get up and walk because the numb feeling makes me nuts! Sorry this happens to you too. Janine

Thank You SOOOOOOOOOOOOOOOOO much Danelle. I saw Dr. Boris today. He sent me for labs and started me on florinef. He understands, WOOOO HOOO. Havent been in touch because Ive been doing the cardiologist sending me to the neurologist sending me to the endocrinologist sending me to the cardiologist thing. I think Dr. Boris will help me. He said he will try anyway. The only problem is that he is a pediatric cardiologist and hasnt a clue about short term disability and work stuff. So Im going to Forrest City at the end of June to se a woman cardiologist, Dr Keever, who is supposed to have POTS patients. I very worried about the future with no clear prognosis. Myemployer will only hold my job until September 14th. Which means my insurance goes with it. Thank God I have short term and long term disability coverage. What do you do when the insurance is gone? Geez, my meds alone will cost a fortune. Im sure I will be seeing the social security lawyers too. Can you have social security disability and private long term disability insurance at the same time? The funniest thing that happened today is that my heart rate was 57 when they did the ekg and my bp was 114/79. LOL. Hope you and everyone are doing well. Peace and Prayers Janine

Hi Lindajoy, Some explanaitions: Couplets are pairs of PVC's Ve means ventricular ectopy, ectopy means out of plce Bigeminy is a ventricular beat after a normal beat of your heart. A Block is an interuption in the electrical (nerve) conduction that regulates heart rate/beats. There are several kinds of blocks depending on the nodes or nerves involved. Atrial flutter is a rapid (tachycardia) heart beat of the upper chambers of the heart the beats are very disorganized. I hope your doc has a follow up appointment for you. Sounds to me like there is a conduction problem with your heart but not serious enough to be life threatening. If your doc hasnt scheduled an appointment to discuss the results call and insist on an appointment soon. Peace, Janine (trying not to spread fear and panic over the cardiac system)

Thanks All I appreciate your advice. Getting nervous though. I hate all those tests. I know Im in for another tilt table wich makes me sick for days. The one advantage I have is that they cant blow smoke up my ***. So I will grill them for all the info they have and report back toyou all. Thanks For The Support Janine

Hi All. Hope it was a good day for you. I am leaving Sunday to go to Duke University for a work up with a cardiologist who knows about POTS and NMH. Im making a list of what to bring and what to ask. Since I am brain damaged today i would really appreciate some help. Name some drugs your on that help please. Got my med records and diary of symptoms got my med list What questions should i ask. It would be great to get all your input, Id really aprpreciate it. Thanks Janine

First I would like to say the the excepts taken from my posts were just that, excepts. Read the whole post. Second It is my understanding form JBLs iinfo that he needs to go for a cardiology work up, what he is having may not be POTS related, we have no reason to assume this until the cardiology work up is done to rule out anything else. We have POTS for years, and POTS symptoms are so varied that we could easily miss a sign of something else being so conditioned to our POTS symptoms. Third and Last (this is my last post on this topic) Anyone with chest pain should go to the ER. Read the AHA website, simple, basic. With The Deepest Concern For Everyones LIFE Janine and Im sorry if I offended anyone

I dont mean to make you afraid. I stuggle with the same thing. pace back and forth deciding if Im going to the ER 5 or 6 times a week. Lots of people walk around with pvc's without any problems. No one can say when it becomes an emergency. A typical ER course of treatment would be monitoring and admission if you have frequent PVC's and then a cardio work up. The whole point I was trying to make was dont mess around, go to the ER. I dont know if the people I have seen die from dysrhythmias had POTS. I just ran my butt off doing everything I could to keep them alive, no time to read charts. Im scared too. It just hits me, bam. Then I pace around trying to decide if I should go to the ER or not. Some of you on here describe symptoms that are considered emergencies and would get you seen at the ER pretty quickly. And the explaining I did on my other post was just correcting some info that someone else wrote ]Sorryy to upset you Janine

OK folks. Dysrhythmia and arhythmia are the same, irregular heart beats, there are many. Bradycardia is a heart rate lower than 60, tachycardia is a heart rate over 100. Yes, as an ER nurse I have seen people die from irregular heart beats, the patients either came in to the ER way too late for us to do anything or the person had underlying cardiac disease. It is normal for people to experience PVC's. Preventricular contractions. It becomes a dysrhythmia when you have a whole lot in a row. It can become Ventricular tachycardia and it can kill you. Now, dont panic but. If you or anyone you know regardless of health status, have chest pain, shortness of breath, left arm pain, (see AHA web site for other warnings of cardiac emergencies). Go to the ER. 99% of the time you will be there for hours and be sent home with nothing wrong, and theyll tell you its stress or chest wall pain or whatever. But that 1% of the time, if you dont go, you can die. Dont risk it. Chest Pain that doesnt go away= ER visit. Call your doc he/she will tell you the same. Calm Down All Janine

Thanks Mary, I am waiting til monday, my doc is out of samples, cant even go pick up an rx at the local pharmacy because my insurance says Im not due for a refill til July. UGH. The Pharmacist tried to get a mail order delay overide. Just one of those wonderful insurance things. No cash either. I am patiently waiting for my short term disability check to get here. I have excellent std insurance. Pays 70% of my salary and the transition to long term will be smooth. But right now, no income since March 14th. Im down to rolling change. But the bills are paid. Cant complain too much and i dont care about food, cant eat cause of nausea. Hubby is on top of my depression. Thank God for him!!!!! Beautiful day today. Hubby got me out and on my horse, had a wonderful trail ride in the sun and we got the garden planted. It is so strange not to be able to sweat.... Thanks All For Caring...... and keep up with your ssri's Janine

Sorry but I had too, I like these topics, I need a break!!! My all time favorite Tell Me Something Good, by Rufus and Chakka Khan. Feathers, by Neil Young and just about anything by Crosbey , Stills, Nash and Young. Also Led Zep Janine

This is a good question, very fun!!! My all time favorite is Brahm Stokers Dracula. Moonstruck is my family, I swear, I have a copy of this movie and it is a typical Italian family, Great Flick. Anything with Johnny Depp or Val Kilmer, they are both wonderful actors (and Hotties too) Tombstone Whats eating Glibert Grape Gone With The Wind, of course The Godfather series too. Peace All Janine

I have been reading about POTS and SSRI's, I am out of my lexapro because of the wonderful mail order AETNA has. Been off 2 days and I am going way down quickly. Why are you lowering your dose? Not only do the SSRI's help the depression it also helps nerve conduction. Talk to your doc about going back to the dose that was working I hope you feel better, and you know you over did it if you were moving furniture g/f. Hugs and Prayers Janine

http://sleepdisorderchannel.com/rem/ found it, heres a link Janine

Hi Ernie, Doc is prob gonna do polysomnography to rule out REM Behavior Disorder. (RBD). Basically its a rare disorder of acting out dreams during REM sleep, shouting, grunting, motor activity. Narcolepsy is falling asleep during the day, uncontollabley, sleepwalking doesnt occur during REM. Hope it turns out well for you. The cpap should help you, takes some getting used to. Good Luck Janine

Hi All, I dont know you all well, yet. I havent posted much. But everyone here is a great insipration to me. Im sorry you all have this*^%$&* condition. Its really hard to live with this. No one understands, I am sooooooooooo sick of doctors and tests. I just gave up my job on March 14th and that was really hard. I want a glass of wine, I want to get on my horse and ride really fast up the mountain, I want to be able to carry my grandson (chubby little dude). I want to be able to have sex without having my heart wack out on me!!! Will I ever be able to? I have a cabinet full of drugs, Toprol XL, Procardia, Nitro, Labetelol, Valium, Klonopin, Marinol, Reglan, Phenergan, Synthroid, Nexium, Vitamins, Minerals, and lets not forget the colace. (Im sure I forgot some). How do you give up the simplest things? Im starting to get really depressed and I actually feel good symptom wise today. So I ask you all, as I choke down my handful of evening meds, How do I come to terms with my life? Sorry to whine, guess its my turn. Janine

OK ALL OF YOU... If your blood pressure gets up way higher than normal (we all know what highs and lows we can manage) and stays up and if your heart rate ever goes over 130-140 and stays there GO TO THE EMERGENCY ROOM. I dont care who I piss off.... I am an experienced ER Nurse...... I have seen strokes first hand. Yes you CAN die. But even worse, you can wind up in a nursing home half paralyzed with someone else feeding you and wiping you butt for the rest of your life.. Persephone, if your BP is still high and your heart rate is actually 175 get your *** to the ER right now. I know your sick of doctors, I know you dont want to go sit in an ER for hours to have them not understand your underlying condition, but high bp and high heart rates are something that they can help with in the ER. They are not going to cure you but they can keep you from stroking from high blood pressure and they can keep you from having cardiac arrest from a heart rate of 175. Simple controlable things (on a short term basis for us). For Gods Sakes Hon Go To the ER Janine

I have seen many people die of dysrhythmias. Dont know if they are POTS related or not. Thats one of my big concerns. I am going to request that my cardio specialist, when I go see her for the first time May 16, that she give me an event monitor to wear. Not a Holter monitor but an event monitor so I press a button when I feel a dysrhythmia and I call a number and transmit and they tell me right then if I need to go to the ER. It is very plausable to assume that you can die if your heart goes wacko POTS related or not. Dont want to freak anyone out, sorry but its the truth. My concern has always been, am I going to die, during an "attack". Not from a illogical Im panicing because of adrenalin stand point but from a logical nurses stand point. I always tell my patients to go to the er immediately if you have cardiac symptoms, time is muscle. And here I am having all the symptoms of a major MI and I know Im having dysrhythmias and Im not doing anything but knocking myself out with a valium and praying I wake up. This Totally ***** Janine

Hi Morgan, Sorry that happened to you. Im an ER nurse and I say go get them. A word of advice from the inside. Go to the medical records department of the hospital. Ask to see your whole chart including the flow sheet, doctors notes, nurses notes and test/procedures/med lists from that particular visit. Get copies of everything including your itemized bill. Dont take no for an answer, dont tell them you coming, go in and nicely request copies. Get the names of the docotors and nurses that took care of you. Go now get the records. Even if you have to get administration you tell them you have a legal right to your records and you want them now, dont let them give you any crap about policy. Your right to see your records is immediate. Dont mention suing them right yet. Dont get a lawyer you can quickly and easily get a big fat check with out a lawyer who will wind up with more of your settlement than you will. I do legal nurse consulting too. Go get your records and we will talk more privately. Janine

Hi, I LOVE Lexapro!!! The trick is staying on one dose for about 5-6 weeks to see any improvement in POTS symptoms. 3 months in is a good time to up the dosage. I have read some research on Lexapro related to POTS and it is supposed to help nerve conduction which could improve POTS symptoms. Lexapro has the least side effects of all seritonin reuptake inhibitors. Which basically kep your nerve endings from accepting seritonin once iuts released into the synapse (the space betwen the nerves) which can cause a variety of symptoms until your body gets used to it. When I first started Lexapro I was so happy, couldnt quit grinning. Everyone wanted to know what I was on. And wanted some (lol). Then I would get all psychodelic and strobe. Then it eased off. After 8 weeks my doc upped my dose to 20mg. I think it helps tremendously! Good Luck and dont give up. Janine