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starting from scratch...


april abbott
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Has anyone here actually had worthwhile results with meds? I mean, I know a lot of you are on some type of medication with maybe some positive results and there are many different types. Some of you are on beta blockers, some try calcium channel blockers, SSI's, antidepressants, etc. But, in all honesty, is it worth it? Because so many of you are on meds yet are posting here regularly about major symptoms and many of you are on disability and still suffering from this terrible disorder. And I wonder, should I even bother going back to the doctor? Should I give meds a try when they didn't seem to work before? I will have to pay to see a doctor, pay for meds I can not afford, somehow manage the side effects of different meds that may or may not help and could even make me worse.

I was diagnosed about five years ago. I tried a beta blocker, Lopressor, with no success. In fact, it made me much worse. I went to a cardiologist, a neurologist and an endocrinologist and none of that got me anywhere and at the time I was broke and had no insurance. I finally made the decision to give up on the whole charade and stopped the doctor visits and meds.

I had a rough few years and this was following the birth of my daughter in 1999. But last year I thought that had finally gotten back on track. I had several months with little to no symptoms and felt like I was simply better. But then, wham! Now my symptoms are back. My life is upside down again. I have good days and bad days and I am not nearly as symptomatic as some of you but it has hindered me so much. I have been a stay at home Mom for the past five years and now that my daughter is starting kindergarden next week I will be facing some decisons. Or, rather, I will be facing a lack of decisions. I would love to either start some college courses(I am just 26 years old) or return to work part time. Unfortunately, we really need the money from a second income so the weight of that burden sits on my shoulders. And now here I am sick again and feeling completely helpless.

So now I am thinking. Should I even bother? If I honestly thought that my symptoms would dramatically decrease then I would go for it but I just don't see that happening with any type of therapy. I hate doctors and like many of you have had horrible experiences with many of them. And a lot of them are ignorant of this disorder. I haven't been treated or tested in so long and when I did see doctors, I hopped from one to the other sporadically so I would have to start over. More tests, more meds, more poking, prodding and monitoring.

When I was first diagnosed all I was told was that I had a condition called dysautonomia. I had no idea that there were different categories of this disorder and that symptoms varied so much from person to person. This website has been informative and encouraging. However, it is also a reminder of all the negatives that could happen. Reactions to meds, ER visits, painful and scarey tests, rude medical staff and an exhaustive search for a therapy that may not exist for me.

These are my symptoms: I never pass out but I get very light headed, which is my worst symptom. I get short of breath, my heart races, palpiations, muscle fatigue, intolerance to exercise or any type of brisk activity, intolerance to heat, extreme fatigue, muscle cramps, shakes, sensitivity to any type of medication and alcohol, anxiety attacks, chest pain and when I do get even a mild cold or virus I am nearly bed ridden and all my symptoms are exaggerated. My blood pressure stays a little high all of the time and my heart rate is commonly above 100 at rest. It isn't uncommon for it to be 116-120 when I am feeling cruddy. I take my bp during this time and it doesn't seem to drop or be low at all. In fact, it stays normal/high and so does my heart rate.

So, how many of you really see dramatic improvement with meds? What type are you on and what difference did it make in your life? Also, I would like to hear from those of you who have chosen to stay away from traditional prescription meds and please let me know what helped you.

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On meds: I'm working full time and in grad school full time

Off meds: I'm completely disabled and homebound

I take: 10 mg lexapro, 10 mg cozaar, a bunch of allergy meds, nexium, and miralax. Depending on the level of my bone pain, I have oxycontin at a very low dose (10mg, standard dose is usually 30). I have levsin sublingual for when I have GI spasms. I also have various meds to deal with the occasional migraines.

I think you will find that almost everyone here finds benefit from some type of medication, either Rx or over the counter. Also, many herbs DO have active ingredients; a number of members here use liccorice root, which helps the body retain fluid.

Nina

Edited by MightyMouse
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I can tell you that studies show most patients improve with proper treatment. I feel a million times better on a beta blocker, but -as your experience shows- we are all different and will respond differently to medication. I couldn't imagine living without my beta blocker.

I do take licorice root -an alternative therapy- but, as pointed out earlier, we all respond differently to treatments.

Michelle

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April, I would strongly encourage you to not give up yet. It is not uncommon for dysautonomia patients to see eight or more doctors before getting proper or even adequate care. Unfortunately, there is no magic pill either. Even among beta blockers, many differrent ones might need to be tried before finding one that works for you without major side effects. I read in one of your previous posts that there is a dysautonomia center not far from you. I would do whatveer it takes to get there. Not only can they help you with your sxs they can give likely give you a diagnosis. If you are unable to work- apply for disability. That is what it is for. I have a Master's degree but get disability because I simply cannot work- it is not an option. I require iv treatment daily. However, on the same note, it is the iv treatment that allows me to have any normalcy to my life. So, yes, meds work! Without it, I would be in a much worse state than I am in now and certainly would not be allowed to drive. I have been where you are. I lived (barely) with unexplained sxs for years after the birth of my second child having test after test done. Our financial situation was dire. We had two children, one income, and a sick mom (me). My husband ended up leaving his job of seven years because he was working eighty hours a week and had a sick wife at home trying to care for two small children. We moved back home so that my parents could help and simply started over. My husband was able to get a better job (after eight hard, scary months) and my disability was approved just three months later! We were able to eliminate nearly all of our debt while home AND Jason got a promotion with a substantial raise after six months. We now live independently, debt free, AND I actually feel pretty good physically. I still require iv treatments and see my cardiologist regularly but we have came a long way in just nine months! So... do not give up. Things seemed to take forever to work out for us but when they did- they did in a big way. Hang in there!

Carmen

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Hi April

Medication changed my life after I developed severe POTS during and following pregnancy with my first (and only) child. Without an SSRI ( I take a low low dose of prozac) I would be ill/disabled to some degree, I believe. Everytime I try to wean off it, I start to develop intolerable symptoms--dizziness, fatigue, tachycardia, weakness, muscle pains, chest pains. On the med, I work 30 hours a week, exercise, travel and have a reasonably normal life with minimal symptoms.

As Michelle states, most POTS patients find good relief with medications--although not necessarily "cured". It is true that some cannot tolerate meds. Some do best with very small (smaller than the smallest) dosage. Talk to your doctor about starting anything with a very small dose, expecially given a history of high sensitivity to meds.

I also agree with Steph that there are many non-medical treatments that work wonders (for me). This includes--high fluid intake, increased salt, and stepped up exercise. Yoga and meditation--and biofeedback--also helped me. Everytime I see my specialist--he asks--are you keeping up with fluids? are you exercising? These simple interventions are considered very important for all POTS patients.

Katherine

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Thank you all for the informative answers you have given. Yes, this has helped me reach a decision that I have been mulling over for several weeks. I have decided to try again with the doctor and meds. Wish me luck. I have a dysautomia clinic about 80 miles from here so hopefully my insurance will cover it.

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You're absolutely right, steph. I do believe in being prepared and informed BEFORE a dr visit because, unfortunately, I have learned the hard way that doctors don't have all the answers and can do more harm than good when unwilling to fully listen or understand such an enigmatic illness. I have always asked a ton of questions and written them down before hand, as well as writing down symptoms, treatments, etc. into a very detailed diary.

But usually some very unwilling and arrogant doctors saw this as a sign as being a hypochondriac. You know, if you write down your symptoms and spend a lot of time on researching and informing yourself of your options, then that makes you paranoid and anxious. Some docs seemed to think that all I did was sit around all day with my nose in medical books and internet sites, picking out different illnesses that sound scrumptious. Hmmm...light headed: that sounds good. Dizziness, palpitations, frequent urination: give me a few of those. Oh, and chest pain, weakness and trembling: I will give those a whirl. When, in fact, I was the one doing myself the most help. Some of the docs I saw seemed so clueless. I KNEW it wasn't anxiety or depression causing my symptoms, and yet, I was being force fed that idea for years. I knew that there had to be a name for what I had and of course I chose to delve into the research to get some ideas and gain knowledge to help my situation.

The only worries I have is about medication. I will probably have to reaffirm my diagnosis at the clinic with more uncomfortable testing but that doesn't scare me as much as the meds I will have to try until I find the right one. Side effects of some drugs can be very scarey and I have a five year old to take care of so the last thing I need is to freak out and be incapable of functioning while having a bad reaction to some medicine. I think the key is to try very low doses and give myself time to adjust. I don't have symptoms every single day but on the days I do I am incapable of functioning. I just want to be able to go to work or school and be dependable again.

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I'm glad to see everyone could help you with your decision. I was in the same boat as you (kinda). I have 3 young kids 6,3&1 -I'm 28 and have been sick for almost 1 year. I refused meds after trying them when I was first really sick and know one knew what I had. They just kept prescribing things and I also no longer had trust in the medical community. The way they just let me suffer and tacked it all up to anxiety and I wasn't allowed to see a doctor at 2 clinics unless I got pshychological help first. I knew it wasn't anxiety. I love my kids and would never not take care of them but I was sooooo sick I couldn't and still at least for a week each month I'm horribly sick so I need alot of help on those days. My main complaint is nausea, complete debilitating nausea. But I also have migraines, dizziness, muscle aches and now depression due to all this. I tried alternative meds for 1 year and finally decided to try meds if not for me but for my family. I need some help and I trust my new doctor because she encouraged the alternative before meds and still says if I'm strong enough to work out it will help. Anyways I just started on mestonin and have noticed this has been my best month , yes I still got sick but it wasn't as bad as the previous months. I also started zoloft to help with both my physical symptoms and emotional crap I have now because of this illness. I just started that so we'll have to see if it helps. I just want to get to the point of feeling happy and taking care of my wonderful babies on my own and it taking meds is going to do that then I at least need to try and If I get healthy enough or have a long enough remission, I'll wean off. I'm not viewing medication as a life sentence, just a boost till I get strong enough on my own.

Sorry for babbling but you post touched me since I'm currently going through the same thing.

Dayna

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I have noticed a small improvement in my function when I am on a low-dose beta blocker (25 mg Toprol XL), 75 mg Effexor (an antidepressant) and 0.25 mg of Klonopin a day.

I was on 50 mg Toprol for over a year and since I have cut it back, I breathe better and feel much less fatigued.

I also have gotten better with a personalized physical therapy program, regular brisk walking, meditation & yoga.

Amy

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