janineerrn

Hi, I wound up on the brand Innopran after trying prpranolol and the other variations by other manufacturers. You need to remember most of us have chemical sensitivities so even though the the main ingredient may work the additives in from the different manufacterers may give us unwanted side effects. This was true for florinef also for me, the generic work much better. Its all trial and error This is meant as no offense to anyone. I was the same way until I had a Doc familiar with POTS sit down and explain to me. This sums up what he told me : Most POTs patients are at thier wits end by time they get to me and are looking for a magic pill. Not everyone reacts the same to all medications and not all medications are manufactured the same. You have to have the patience and will power to try medications at different doses, different forms, be strict about when you take them and what you take them with.... It was a long lecture. This is just something I struggled with and then got organized. Everything on paper so my foggy brain wouldnt forget. This is what I learned from my experience. Sometimes meds made me sick at the initial low dose but if I increased the dose I didnt get side effects. Sometimes I had to suffer through some crappy side effects for about a month until my body tolorated th med and made me feel better. I give all new meds 1 month with out introducing anything new into my diet or meds. I try different forms of the med, liquid, chewable, different manufacturer becasue they contain different additives and there may be a particular additive that makes me sick. ( I know we all look up meds to see their effects but has anyone looked up the ingredients in the med and then looked up the side effects of those ingredients or fillers? Try it you may be amazed) I learned to watch whatch what I eat with meds. I try different times of day to take the med. I watch out of side effects if I take several drugs at one time. I actually take my meds (14 pills) at 6 different times of day. I take meds that give me diarrhea with yogurt. It helpd. I found that the liquid form of my mineral supplement helps tremendously but the pills do nothing I can notice. Ita a pain in the butt at first... but its worth it in the long run. Peace Jaine

Hi, This is yet another reason I am pro beta blocker. I am on Innopran XR, long acting propranolol. It significantly reduced my episodes of irregular heart beats. I have had PSVT, PAC's PVC' A Flutter.... I personally have tried many beta blockers Toprol, Atenolol etc... I found that (and research shoes) that Propranolol is more "general" acting and it more apt to cover multiple reasons for ectopic heart beats. Peace Janine

Hi, I havent been around much til lately. I have been in a pots hole for about 6 months. I give up on trying to get diagnosed for every symptom that pops up. I am so tired of doctors and medicines. I seem to have things under control, to a point that is acceptable to me. I have been doing some serious soul searching since I have so much time on my hands and cant do much. I am only seeing my cardiologist and my internist. My husband is becoming more amazing as time passes. I feel very lucky to have him. I hope your doing well, good to hear from you. Janine

Hi, I have a neurogenic bladder from POTS too. Urination is an autonomic function. I dont self cath yet, I sit down, pee a little, stand up, sit down ...... real pain. I have to be careful and go pee a lot to avoit a UTI. I could hold it til I explode tho lol. I didnt explore it too much with the doctors because I dont need to be poked and prodded any more and other than self cathing there is not much they can do other than a few invasive procedures to tell yuou you have a neurogenic bladder. Spinal cord injury is another cause but im sure i dont have that. Good Luck Janine

Hi, I know because my adrenal system kicks in over the slightest thing. I could startle over something stupid and my heart rate shoots up to 150. I found tht my adrenal storms happen when my bp drops too low. And then wow do I go for a ride..... High heart rate, bp spike, nausea, chills, anxiety, chest pain, sharp stabing pains, numbness in limbs, cant sit still, dizzy, feel like Im gonna die,. Then it slows down and I vomit and shake and feel like I just ran 100 miles. If you look at the biology of what actually happens eg the flight or fight response... the symptoms make sense. I found that the combo of meds I am on and not freaking out during an adrenal storm helps. I get them less frequently but, I still get them. Good luck, I know it is horrid. Janine

I like these "deep debates" I posted in the general chat forum the question Where has POTS taken you spiritually and also I posted on "The Cycle". I like to know about "different" theories. I was thinking of doing or asking for a "spiritual" forum. Where we can share more holistic approaches and discuss our spirituality with out fear of being attacked for our beliefs. I think we can learn from eachother. I dunno. Peace Janine

Im in the mountains of Western North Carolina. I enjoyed the snow, so beautiful. calm, quiet. My neice made a snowman and i made hot chocolate. The moon on the snow tonight is breathtaking. I just stay in and enjoy the fire. Janine

One of the signs of dehydration is BP dropping upon standing. There are many beta blockers available alone without a diuretic. I think I went through 4 before I found one that worked nd now I cant live without it. It reduces my tachycardia and i feel better when on it. I did have a rx for lasix (a diuretic) when I was on florinef, high salt, high liquid diet, just in case I pufed up but rarely had to use it. You need a doc who knows about POTS to prescribe your meds. Im not trying to be difficult at all. You should read archived posts and see the different reactions people have had to different medications. Its such a strange juggling act to find a combination that makes your life bearable. Good Luck Janine

Hi, Firtst Id like to say Im am sorry you are where you are. I noticed as your reply to the posts that you ae gaining a different perspective. I have been where you are.... I think it was 2 days ago.... One of those days where you just cant, no matter what it is, physicall, emotionally, taking a shower, eating ...... Thats usually when a crisis pops up, just to put ya over the edge. You are way stronger than you give yourself credit for! I take wellbutrin for its effects on norepi, it is not an ssri. Freeing up neurotransmitters like norepi help nerve function. It also happens to be an antidepressant. I take Lexapro, it frees up seritonin in the blood which helps nerve function and is an anti depressant. If I go off the Lexapro I am a babbling idiot and go into a major brain fog. I get depressed quickly. This combo may not be right for you. We all tolorate meds differently. If I were you I would try to add and SSRI and stay on the welbutrin if you are tolerating it. Lexapro is a milder for of celexa without a lot of side effects and it crosses the blood brain barrier which is a good thing. Zoloft is a milder anti depressant too. Maybe ther is a combo for you that will work. I have been where you are now and Im sure I will be there again. We all manage to make it to tomorrow. Peace Janine

Hi, Just thought id mention that my gp originally worked me up for frontal lobe seizures and phiochromocytoma. The symptoms are similar. (i didnt read the article but I wiil tonight) Peace Janine

Hi Maggs, Welcome. I have a concern with what you posted. Are you seeing a doctor that know anything about POTS. I am not giving medical advice but sharing what I know. the HTCZ that you are taking along with your altace is a diruetic. You do not want to lose fluid if you have POTS. The norm treatment for Htn is a beta blocker or calcium chanel blocker along with a diuretic because having too much fluid in your system is a common cause of htn. A lot of us take a beta blocker to help with the tachycardia. I take it to keep my bp from spiking even tho I get very low blood pressure also. Most of us are on a high salt high sodium diet to retain fluid. Please print the info on the DINET page and give it to your doctor. If your doctor is not willing to learn about POTS and its treatment it is important you find a doctor who knows about POTS. In the years before my diagnosis I was on so many medications for so many symptoms, made me sick and poorer. POTS and its symptoms present quite differently in everyone and so does medication tolorance. If you have POTS... It is not a common disorder and the best thing you can do is educate yourself and your medical team. Your in the right place for info. I hope you not have POTS or any dysautonomia. Its a long road. If you have questions ask!!!! Nothing can be a stupid question here. Peace Janine

I honestly believe that the system makes us sicker. FYI for all those that have UNUM Provident LTD... They lost a suit against them for a POTS patient they denied. When I brought that to thier attention things got a little easier and they definatley stopped giving me a hard time. Ill see if I can find that link again. I printed it and faxed it to them. the key with LTD companies is that if you want anything in your record all you have to do is fax it to them and it is automatically scanned into your file. It can be a major plus. I faxed in all the info on POTS I could find as well as the article on the law suit they lost. But becareful what you fax them, you dont want anything in your file that may hurt your case. Peace Janine I paid LTD insurance premiums for years, now when I need it I have to fight to get it. What a bunch of poop! Do they think I want to sit home and do nothing? I would love to go back to work and play with my grandbabies and have my horses back. Isnt anyone concerned with the quality of our lives with this disorder?

Thanks for the hugs and replies. I havent given up... I have just had every test imaginable so I give up hope for a cure in my lifetime. I have hope for my life. I am trying to find things that will improve my condition through trial and error. I just noticed that pattern through out the posts here, sort of a timeline. I think the stress of doctors, misdiagnoisis, insurance, disability issues etc... make us sicker. Justwondering what the condition of the people who keep fighting with the medical and disability system is vs the condition of people who said f the system. I think stress reduction is a major key to feeling better. Peace Janine

I am very interessted in the info you found. Do you have a link? I am a nurse and used to doing research so i may be able to put it into lymans terms. I find the moderators here quite helpful when it comes to info they know about that is relevat to the post. I personally like when people post theories, they are fun to explore. Thanks Janine and ps, there is not one of us here who do not get a little freaked out sometimes.

I would want to time travel, not necessarily to change the past but to experience cultures, and eras (and know the winning lottery numbers from the 20 million dollar power ball about 10 years ago, lol) Also the invisible woman who kicks doctores **** sounds cool and entirely too fun... Thanks for the laugh. Peace Janine

Ive had this diagnosis for about 2 years or more now. It looks like from the posts in here that there is a cycle to the acceptance and progression of POTS. This is my observation. We have POTS, (some with gradual onet over the years, some with sudden) we are worked up for everything, medically cuz we ourselves as well as medical professionals have never heard of POTS. We become fustrated because we can not control our symptoms but obviosly are not "medically" ill because a lot of our tests are normal and the abnormal ones make no sense for our symptoms. We are told to get psych help. What else could we be but mentally ill. We begin to get tired, from the doctors, from all the medicines all these docs want us to try, from trying to keep up with our normal active busy lives. Fatigue sets in, maybe because our hearts are working double time to keep us going at a usual pace. Yet we keep going, and pass out at work or in Walmart and are carted off to the ER to again be told we are nuts. Work becomes harder and harder, the house is a mess. the kids are getting out of control, everything is piling up...overwhelming. CRASH>>>> at the 1 year point Specialists, finding out about POTS, depression, accepting our condition, anger, family issues, work issues, disability, insurance, fighting to keep it together. Giant juggling act to keep life as it was. Have just enough meds and strength left to carry out this act for a while longer. Crash>>>> 2 year point. medical bills, loss of insurance, fighting for disability money, ready to open a can of whoop azz on some doctors but all you can mange to do is lay in bed and cry. What happens next? Janine I am in a great mood tonight, can ya tell?

Hi, Im into week number two and I am taking the giant glucosamine sulfate tablets (tried to grind them and put them in juice, pudding etc... yucko). Other than having to choke them down I have had no side effects and wonderful results. Its like AHHHHHHHHHHHHHHHHHH, I can have relief from something. Almost makes me wanna cry. My hips and my knees definately ache less, my neck even aches a little less. I still hurt all over, more fatigue I suppose. But its something, woo hoo. Also I have been doing very basic yoga. I found the stretching and breathing really help. Its quite a sight. I stretch for 2 min and then lay on the floor out of breath with a heart reate of 120. Then I just practice hatha yoga breathing or i check on the size of the dust bunnies under the couch since im on the floor anyhow. Peace Janine

When this happens I take a couple of klonopin and a valium and crash out. The only thing that seems to help is to drug myself and go to sleep and hope i wake up. I totally understand, Im telling you we have the exact same symptoms.... seems like we react the same way too. Get a standing order for iv fluids from your doc. Keep a copy at the docs office, the ER, and any local urgent care you go to. A simple order 2 L lactated ringers iv over 2 hours PRN or ns or 1/2 ns, what ever your doc sees fit. Then yu wont have a hassle. If you can get yourself up and to the hospital on days like today, before you pass out. the fluids will help. Feel Better Hun, i know how bad i\t ***** Janine

Hi, I am sitting here and I hurt all over, my bp is low and I feel like I weigh a ton etc.... Where has pots taken you spiritually? Not talking religion here. I have been doing Yoga and meditation for a while now. The meditation takes me away from my body. i found out something very interesting. The connection to God/Spirit is inside of us. Looking outward for God/Spirit is pointless. is like a radio frequency you have to tune into. i discovered it quite by acciident. I was so angry spiritually, lost. i was raised Chritian, I pray. But i have made my inner self, my spirituality a priority, exploring myself on the inside (since I spend so much time laying down). With out POTS i never would have had the time to experience this. (no Im not nuts, well I am but i hope someone understands this). I would like to know where you are spiritually. This is a hard one and I understand if you dont want to share but, i belive the spirit needs healing as well as the body and mind. What do you think? I think its a great topic and we should be able to express ourselves honestly with out being afraid of attack. Everyone has a differnt set of beliefs. Please respect that when you answer this topic. i hope everyone feels safe enough to contribute. Does anyne do dream logs? Peace Janine

Hi All, I started taking glucosamine sulfate a few weeks ago and I feel a big improvement in joint pain. I have a lot less snap crackle and pop too. (I sound like a walking bowl of rice crispies in the morning). I was wondering if anyone else tried glucosamine. If so did it help? Did it continue to help? Any POTSY side effects? The only problem I have is that the pills are huge and gag me. Id apreciate any input good or bad. Thanks Janine

Hello, What tests/ symptoms were done that gave you the diagnosis of POTS? Be careful getting off xanax, so many things can happen, I had patients in the ER with xanax withdrawal (not just benzo's but in particular xanax) its not funny... its serious. Make sure your doc follows you closely as you wean off xanax. In my opinion you will not realy know if your POTS or symptoms that are POTS like are caused by your long term use of xanax until you are off of them for a while. If you are on a beta blocker you may also be dependent on it. From my experience in both the ER and psych unit, xanax did not cause POTS symptoms in the long term users, but that is just here in my town with a small segment of patients. I ran a Google search and did not find any research POTS being caused by long term xanax use although there is research to show that long term xanax users can develop low blood pressure. The research also shows many POTS like symptoms with xanax withdrawal. Did you try to stop cold turkey when you developed your POTS? Just be careful and I hope and pray that when you are off xanax that you no longer have POTS but from what I have read it doesnt fit the research. Peace Janine

I would want them to know that just because I lost 40+ lbs, and look great... I feel awful. I lost weight because of nausea ect.. and when I need to rest, I need to be left alone. I have a problem with those around me bothering me when I try to rest. I never know when I may have to lay down, or leave a store, or stop in the middle of cooking dinner to res. It sneaks up with no warning. Some mornings it is very hard to get out of bed. I want people to know I do not suddenly become sick to get out of doing something.. if they could just see what I do do dispite how bad I feel. I just found out recently my daughter in law thinks Im faking it. I am angry about that. I try my best to be the person I was before. But I cant do it all. I would also like people t o know that several times a week I think I am going to die, literally... Its a horrid thing to live with. Peace Janine

Sounds like your vasodilating from heat which would drop your blood pressure and cause symptoms as your autonomic system tries to recoop in its potsy disfunctional way. I avoid heat. Janine

Hi, I get stabbing eye pain. Its scary. I have had several work ups for it and nothing abnormal was found. I just try not to freak out.... If you find an answer please let me know. Janine

yup, everyday, burning, tingling, numness....... ugh Janine