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Recovering Is Possible


masumeh
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Hi all,

It's been a while since my University of Iowa appointment, and several months on the new approach of no-drugs, more physiotherapy, and breathing control (lowering respiratory rate). My blood pressure and heart rate still leap when I get a little dehydrated or exercise, especially taking the stairs or holding something heavy. However, I'm far more active, and I think I can say that things are working out well. I just completed my first month of working outside the house in like 10 years! My job is physically demanding because I have to keep moving, circulating my classroom and lecturing standing, for about a 3-hour stretch. I also have to take the stairs several times a day, going between the staff room and classroom. But it's great! I'm having so much fun, getting human contact again. I took a big risk in this step, because I really wasn't sure that my body could stand up to it. But it's actually help further my recovery. My body is getting stronger and stronger. This is part-time work, just from about 10AM to 2PM, but that's really full-time enough for me.

A little history, for those who are interested and do not already know me. I was suddenly bedridden, dizzy, constantly passing out, very nauseous at age 20 (8 years ago or so). For a year, symptoms were severe and no doctor could tell what was wrong. Slowly, over about a 4 year period of time, I was able to recover some function, strength, and mental togetherness. I went back to college, distance learning, and struggled through flare-ups and relapses, remissions and recovery periods, for several years undiagnosed. Three years ago, I was diagnosed with POTS. My TTT showed 75% blood defecit to my brain when standing. I was fainting around 1/week at that time, down from 5/day at the beginning of the disease. I was prescribed Midodrine, which I took for 2 years but could not tolerate in the end due to bradycardia. It helped me get some physical strength back though. (I tried many other drugs without success, including Florinef, Mestinon, and some herbals such as Licorice Root, Butcher's Broom, and Tumeric.) When I stopped Midodrine, I was having a huge flare-up during graduate studies, and fainting several times a day and very exhausted all the time, able to function for only a few hours a day. So things had degenerated a bit after having been good for a long time. After about 8 months without any meds, I felt a lot better, but the same old cognitive problems started coming back. I also seemed to be having siezures and tremors in my arms, so I went to a neuro who specializes in Autonomic disorders (at University of Iowa Hospital and Clinics). I saw him this past July. He told me that much of my fainting is from hyperventilation (without anxiety), and my tachy could be curbed if I could manage to keep hydrated and improve my cardiovascular fitness. He prescribed a drug-free, phsysio-therapy centered treatment approach, and taught me how to use biofeedback to regulate and decrease my respriatory rate. I also stopped eating acidic foods in order to avoid hyperventilation that occurs due to acidosis in the blood (body triggers hyperventilation in order to release calcium into the blood stream to neutralize the acidity level). He emphasized that I would need to take things gradually, and consider myself chronically ill but able to recover although he could not pinpoint the original cause of the illness (and actually he seemed to feel that this was an impossible statement to make at this point although there were many possible causes and etiologies). This has worked very well so far. I am also paying close attention to my nutrition and increasing antioxidant-rich foods, which has helped very much with memory issues (like word recall, concentration, etc). I no longer need to do the biofeedback (breathing into my hands) because my respiratory rate has stablized at a normal, lower pace. (In the beginning, I had to do it like all the time, when I exercised, when I took stairs, when I played with my daughter, when I cooked, when I got up after sitting or laying down, when I raised my arms over my head, etc...all the triggers that used to make me blackout.) I do still blackout some times, if I get up too quickly. And I did faint a few times since starting the new treatment approach. But I have a lot more control over symptoms, and I can see that I'm finally winning this fight. It's very reassuring to me that this time, my energy is not dependent on drugs.

I'm so glad to be able to share some happy news here. I think we all tend to drift away from the forum when things are goin smoothly, so the overall tone is sometimes focused on crises and degeneration rather than recovery and smooth functioning. That's totally natural, and we will have have those hard times and need the comfort we find here. I was always really encouraged to read others' posts about successes they have achieved despite POTS too.

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Hi,

what is the biofeedback breathing? I was trying to find some info online, but couldn't. I am thinking maybe I also have problems with acidity. I am burping ( excuse me ) all the time and three times ended up in the ER with supra ventricular tachycardia.

I am happy for you that you are doing better and thank you for sharing your experience and giving hope to every one else.

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Wow - Great news! I'm very happy that you're able to go back to work at least part-time, as this is my goal, too. I miss the human contact and structure of working. Keep in touch and let us know how things are going.

Cheers,

Jana

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Masumeh,

Thanks for stopping by and letting us know! I'm really happy that you're doing so well. I hope that it keeps up!

I tried biofeedback training, but it only worked when I was actually doing it. Which doesn't allow one to do much else with one's life! I'm so glad you've found it helpful.

Amy

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