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Bigskyfam

Full Recovery?

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I've been on this board since 2006, and I personally only know of one person. She ended up having Stiffperson Syndrome(or, at least the antibodies for it), received treatment, and came back on to say she felt fantastic. I wish I could find my reason for POTS.

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Unfortunately I've never heard of one :( Some on here say that they have improved a bunch either by life style changes or meds or both. Personally, I'm pretty much in the same state I was in back in 2009 when I was dx. It has totally changed my life for the worse in some areas, but I also must add that I have encountered many positive changes in my life as well along the way. Everyone is different and reacts and responds differently to various treatments. Chin up though...there is always HOPE :)

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I've talked to people who claim to have made a "majority recovery" and my doctor who sees many patients with POTS caused by neuropathy (which is apparently around 50% of cases) claims a lot of people do make full recoveries over a 2-5 year period. He insists that it's very slow - takes a lot of time for small fiber nerves to regenerate.

You have to remember that someone who makes a full recovery is unlikely to come back to the board to remember their nightmare... at least that's what I tell myself to explain why we hear from so few of them. The studies claim there is a significant portion of patients who make a full recovery too for what it's worth.

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I found a big ol dose of reality here. As hard to hear as it was I was glad. My cardiologist here said hey we have a plan to get you better to work and life. She didn't know what my life entailed and how I've made small changes to keep my sanity. I needed someone positive but not unrealistic. Think I'm in better hands with my internist now. No meds just lifestyle changes... Going to try part days at work part time at end of month

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BigSky, there is no certainty in any of this is there?

I do see plenty of reasons to think it is possible. And many see improvement. Then some do not. I cannot help but wonder what category I fall in.

Right now, I am just looking for improvement. Any improvement.

My very good neurologist told me "We are working hard and hope to find answers for you. Then we hope to get you feeling better." That is not encouraging or discouraging to me. I do appreciate the honesty.

Unfortunately POTS seams to just be part of my presentation. I think that matters concerning the likelihood of getting better. One moment I wonder to be encouraged that POTS is just part of it, and the next I am discouraged.

Regardless, it is what it is. I want the truth. Until then, I am trying to make a single improvement. Just one.

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I got better!! Hang in there and believe that progress can happen. I was very sick at one point, even bed bound for a period. I try and pop on every once in a while to let people know I got better. If you read my back posts I think I was saying I was 85%. I did have some slides here and there in my recovery. I'm coming around to the 2 year anniversary. It was around 2 years ago that I began to have symptoms, crashed after Christmas, and landed in the hospital for 4 days - finding nothing but ruling out a lot.

I took a trip to Florida a few weeks ago to see some family and I struggled with dysautonomia symptoms while away - fear of flying, being off my diet, a little family stress, I drank too much, it was hot and a fearful flight home. But once home and back into my routine I am feeling decent. I've actually had a few days at 100%.

One of the things that worked for me is to stay moving (in various degrees - some days that was just 2-3 trips to the kitchen). The more I was bedridden the sicker I felt. I had to break the cycle. Finding the combo of meds, nutrition and not pushing too hard too fast (if you read my past posts I did relapse with over exercising) helped with my recovery.

I recommend finding people here who share symptoms. But also try not to get discouraged b/c our systems are a little broken. I remember following someone on here who was running about 4-5x/week. Every time I would try to ramp up my cardio I would crash for weeks. I settled for weight training and it worked for me. Don't give up. I believe this autonomic condition requires re-training of our systems of sort. Not everyone will respond to this but some breathing, meditation, belief, prayer, positive thinking, etc.... does soothe our very sensitive systems.

Hope you find my thoughts helpful. Remember, it took me 2 full years to get here. Stay in the light. Hugs, Tracy

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Tracy that was encouraging to me at least.

Are you able to exercise freely now?

Really, good for you. Congratulations. I wish that for everyone here.

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I can't say I can exercise freely. But I never could. There were clues that I was a dysautonomia person very early - as young as 10 struggling to have cardio status of most kids. I was always more out of breath, more beet red, and couldn't keep up. That being said I found weight training in my 30's and that is very helpful. And still I have days where it seems like I can 'feel' POTS in my system, if that makes sense.

I also hope for recovery for all the folks here. So many that are in such a bad spot. I remember the feeling of not knowing which direction to look for answers, not having docs that understood or had answers, wondering about my own sanity and also feeling terrible every day. Scary. But it worked out after some self education, belief and trial/error.

There are some real pro's on this board. Many of which are no longer actively posting. But look up Rama, Issie, and there's also another person who was actively running while tapering off a heart rate med (I think). Anyway, some really brilliant folks. Also the moderators are helpful in that they have experience. While I like to post the positive feedback that I did get better I type it with respect in terms of worrying that it sounds braggy. But it was the one thing I always looked for when I was lost and feeling sick daily - just one person that got better.

Good luck to you. Believe improvement and life quality can happen.

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Michelle, one of the moderators of this forum, left because of improvement. I believe her post is up top somewhere.

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I can't say I can exercise freely. But I never could. There were clues that I was a dysautonomia person very early - as young as 10 struggling to have cardio status of most kids. I was always more out of breath, more beet red, and couldn't keep up. That being said I found weight training in my 30's and that is very helpful. And still I have days where it seems like I can 'feel' POTS in my system, if that makes sense.

I also hope for recovery for all the folks here. So many that are in such a bad spot. I remember the feeling of not knowing which direction to look for answers, not having docs that understood or had answers, wondering about my own sanity and also feeling terrible every day. Scary. But it worked out after some self education, belief and trial/error.

There are some real pro's on this board. Many of which are no longer actively posting. But look up Rama, Issie, and there's also another person who was actively running while tapering off a heart rate med (I think). Anyway, some really brilliant folks. Also the moderators are helpful in that they have experience. While I like to post the positive feedback that I did get better I type it with respect in terms of worrying that it sounds braggy. But it was the one thing I always looked for when I was lost and feeling sick daily - just one person that got better.

Good luck to you. Believe improvement and life quality can happen.

I think it is encouraging to hear the "success stories".

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There are some long threads on success/recovery stories if you search the forum. I agree it's good for new threads to come up every once in a while to remind everyone.

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I consider myself "recovered". I can have relapses and I function at about 90% most days (IMO) of what the typical person my age probably does. I am not runnng any 5Ks. I walk and do yoga and pilates for exercise. I still have POTS symptoms, but they are minor, most days. I was very sick (bedridden) in 2002-2003 and slowly improved.

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You guys rock! This forum has helped tremendously. I'm speechless and for those who know me. That says a lot. While I may not have a comment all the time I do read all posts and reflect on them. I hope to have more input as time goes along.

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I wanted to chime in about recovery, because I believe it is possible for some. It really depends on what caused the POTS presentation in the first place, if POTS is truly a collection of symptoms but not a disease itself. I really don't know how I even got POTS, except my neurologist thinks it was prolonged physical/emotional stress. Starting in March 2012, I started a new job, had a health scare with my husband, was upset about him resigning from his job leaving me alone to support us, social pressure to have a baby, etc. Physically, I had a rough root canal in July, developed a penicillin allergy, and I was working out heavily for 60 min. a day, sweating all my nutrients away. Then I caught a bad cold from a coworker in mid-August. August 31st, 2012 was the day I started falling apart and it got worse into September and October. I felt like a living zombie, I wanted to die. I couldn't sit upright, could barely eat a meal, and had a throbbing headache that never went away. I was SO tired all the time. I would lay down for bed, shaking and feeling like I was going to have a seizure. I couldn't watch animated TV shows like South Park or The Simpsons because I couldn't handle the grating voices and bright colors. I like to joke that I missed the whole Gangnam Style fad, because I was at my worst during that time. I probably should have gone to the ER but I was so afraid of missing work. I actually did miss a lot of work but luckily FMLA saved me. I ended up seeing a lot of doctors instead. Some said it was anxiety, except my neurologist and cardiologist who both thought it was something more than anxiety. I didn't get the POTS dx'd until this past May, but that's another story.

I think back to how I was a year ago and I really am doing a lot better than I was. I've been tested for many other illnesses, but the only thing I have is mild sensory neuropathy. I just missed a normal result on my ankle with the skin biopsy, and my forearm produced less sweat than normal on the sudomotor nerve test. I love my neurologist, but he gets a little too "doomsday", saying that the small fiber neuropathy is why I have POTS and that I will probably always have POTS. He referred me to his colleague in neuromuscular medicine, who said I really was okay, and that the SFN dx was a big "if" in his opinion. My neurologist also said POTS tends to get worse with menopause, while my cardiologist said that it should get better with menopause. I'm 37 and not near menopause, but I have to laugh at the inconsistent things I'm hearing. At this point, I feel like I'm on my own now, and that I just need to be positive and hope for the best. Tonight, I shopped by myself in a crowded mall for about 30-40 min. I haven't shopped alone in a big place like that in well over a year. I've done small, solo trips to Walgreens and fast food places, but nothing like a dept. or grocery store. But for the past few weeks, I've had fewer symptoms while shopping/working, so I hope I'm turning a corner. I'm going to attempt to see the new Hobbit film in the next couple weeks, which will be first movie I'm seen in a theater since The Avengers last year. I have ear plugs and I plan to bring my sleep mask just in case, but I'm excited to see if I get through it without them.

I want to conclude by stating that everyone's story is different. I don't think "mind over matter" is really helpful for most POTS sufferers, because the reasons we have POTS are different. I seem to have a milder case of POTS than most, but I still feel "off" almost all the time. But I am determined to show my neuro that I can beat this. I have read that small nerve fibers can grow back very slowly, though my neuro said "No, they won't" when I asked him. But I'm staying hopeful! My heart goes out to everyone on the forum who is dealing with this. I get upset to know I've lost over a year of life being in constant discomfort, but then I think there are lots of people that have had POTS for many years. It's not fair, but it has helped me appreciate the little things in life. My trip to the mall tonight would be an annoying chore for most, but it was a big triumph for me.

Happy Holidays to everyone and hopes for a healthy 2014!

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Hi Aeris5000 your story/history (including when getting sick) sounds very similar to mine.

I don't understand why your neuro would tell you that small fibers can't grow back. I'm not going to say my neuro is better than your neuro, but he is the co-director of a major neuropathy center and insists they do...

Also your POTS is almost certainly caused by the SFN, in my opinion. It would be quite a coincidence for you to happen to have both conditions... and you have gotten somewhat better - so isn't that evidence in itself that they're growing back? My neuro says that any improvement is a very good sign - evidence that you can fully or mostly recover (in other words evidence that your small fiber nerves can grow back).

I love my neurologist, but he gets a little too "doomsday", saying that the small fiber neuropathy is why I have POTS and that I will probably always have POTS. He referred me to his colleague in neuromuscular medicine, who said I really was okay, and that the SFN dx was a big "if" in his opinion. My neurologist also said POTS tends to get worse with menopause, while my cardiologist said that it should get better with menopause. I'm 37 and not near menopause, but I have to laugh at the inconsistent things I'm hearing.

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Hopefully good news stories will keep coming in. They are encouraging to here. Just improvement is good to hear.

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I am doing better. this means I am able to work, and to do many things I was not able to do in the past. My Heart rates go high standing but not as high, and I have fewer and decreased symptoms.

This is not a full recovery, and it may always get worse again, but I will take it.

I would encourage others to try various treatments including increased fluids and salt, medications, and especially exercise. All of these have helped and continue to help me.

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More good news. I hope this thread can keep going.

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Small nerve fibres do grow back, but they don't necessarily return to normal. A lot of the problems with autonomic dysfunction are due to increased autonomic receptor sensitivity to neurotransmitters, or sometimes an increase in density after damage to nerves (denervation supersensitivity) in the various systems of the body.

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My older sister was diagnosed with POTS in the late 90s as a teenager. Back then, there wasn't much info out there on the internet and the doctor she traveled to see said it was no big deal. She was instructed to just eat more salt and she'd be fine other than having palpitations. All of the other symptoms (not getting out of bed, pounding heart) were labeled as severe anxiety, agoraphobia, and major depression.

After about a decade, she became her normal self again. It happened over about a year or two that she rapidly improved. We thought her depression/anxiety were better, but actually, it is her POTS went away. She didn't do anything special since she didn't know POTS was causing her many issues (shaking, sometimes instantly dropping to floor (but not fainting) upon standing, fatigue, racing heart, etc...) Since my diagnosis she has been retested and she is POTS free. She works one full time job requiring quite a bit standing and a part time job requiring standing the full time totally about 50-60 hours a week. If she does too much (say, takes on extra hours and goes out a bunch and is under extra stress, all at once), she has issues with painful joint swelling, but no POTS issues. We have some sort of autoimmune issue going on in my family, so I think the joint issues is more due to that than POTS, and perhaps the autoimmune issue makes us more susceptible to POTS.

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I hope everyone who recovers keeps in touch. It seems vital for our syndrome and our future. I'm better than October, med free at the moment. But realize how quickly things change. This helped me personally as im a planner/ organizer... Now I do a bit more living in the moment. :)

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Small nerve fibres do grow back, but they don't necessarily return to normal. A lot of the problems with autonomic dysfunction are due to increased autonomic receptor sensitivity to neurotransmitters, or sometimes an increase in density after damage to nerves (denervation supersensitivity) in the various systems of the body.

The interesting thing is to do a repeat nerve biopsy and see for real how things have progressed. My neurologist is interested in doing one a year after the first one (back in the summer for me). If we had more data about repeat biopsies done at intervals (any papers out there?) we'd know a lot more about recovery.

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I hope everyone who recovers keeps in touch. It seems vital for our syndrome and our future. I'm better than October, med free at the moment. But realize how quickly things change. This helped me personally as im a planner/ organizer... Now I do a bit more living in the moment. :)

Me too! I think it is so helpful for people who are able to get back to living a normal life just to drop by and explain what was (or wasn't) figured out. Should we all be waiting around for spontaneous recovery... or should we be looking for a particular specialist who will find the root? Hearing other people's recovery stories can help us be more at peace with whichever route we choose. I'm inclined to find the root since this is genetic in my case. Still, in my sister's case, it seems she sort of just had a spontaneous recovery since she wasn't doing anything targeted at POTS/dysautonomia.

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