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Update -- doing really well!


Eillyre
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Hi all!

Just thought I'd pop in and give a quick update. Some of you have mentioned in the past that we need some more "success" stories; I can't claim to be completely cured, but I have joined the POTSy rehab club! :D

I began a self-designed physical therapy regimen 4 weeks ago and so far I haven't had any major setbacks! It's been slow (began with just walking across the living room) but at this point I've worked up to consistently walking 1.5 miles each day! I'm also doing arm weights, stretching (so nice to get back to splits on the wall again!), and a little Pilates matwork. I keep a log to curb my tendency to overexert myself :P as well as to have proof of my accomplishment when I'm feeling a little down.

I'm finally feeling a little closer to my age and loving it! Nice start to the new year, huh?!

Thanks for all your prayers, holiday e-mails, etc.! I'll keep you posted on my progress!

Angela

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WoooooHooooo! Congratulations girl. :D Glad to hear you are doing so well. Quite an accomplishemnt on those exercises. Sounds like you are not letting yourself over do it though, which is good.

I'm trying to get back at that level and I'm bound and determined to do so.

Keep us posted on your progress. Hope your healthy success continues!

Gena

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Angela,

Thanks for checking back in here. It is great to hear about successes.

I do a similar regimen to yours. I do stomach pilates work (on the floor), light weights for arms (on the floor) , stretching, and a bit of leg work on the floor with ankle weights. I also walk twice around my mall, which is about 1 - 1 1/2 miles. All of the above is done 5 or more times/week.

I used to do exercising before my POTS, got really scared when the POTS began and stopped everything. Then when I started up again after POTS, I thought I was going to pass out many times at the beginning. I went walking with my husband to begin with. Then, later, I wore an ID hanging around my head because I was really scared I'd pass out or something. I didn't know what to expect.

Also, any illness sets me back more than it would have before POTS.

Are you able to work? Are you able to socialize, go to sit-down places, etc? How's travelling in a car? Just curious.

Thanks,

Nancy

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Angela,

My son and husband and I just returned from Dr. Low and are feeling very optimistic after his explanation and suggestions. He's really big on exercise, especially weight training for the lower body. So happy to hear of your success. Keep it up!

I agree that we need to hear more positive stories - NOT because I don't want to hear the negative ones, but because I want to hear the entire spectrum.

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Thanks all!

Dayna, I didn't start the regimen until I felt that more activity wouldn't set me back. I've tried before and I guess it was just too soon -- major setbacks ensued and it was very discouraging. :( This time my body really felt capable of handling more than "survival" activity. :) I know that the CFS symptoms are gradually getting better with exercise, but I still have to watch myself carefully.

Nancy, I'm part of the ID club, too, although nowadays I just make sure someone is at home & knows where I am. When I first started my dad wouldn't let me out of the house without being fully armed with cell phone and Medialert necklace! :) Glad to hear you're able to exercise also!

I'm not able to work yet -- I still have to rest frequently and my cognitive function is only just starting to improve after a difficult several months. I couldn't concentrate on anything for very long, I had trouble speaking and following conversations, memory was very poor...I just say that my brain was en vacance! :) I am able to listen to 2-3 30-minute lectures and write a little each day now, so that's exciting too. I can socialize to a point; church is very difficult for me still and when friends drop in over breaks I need to rest after about 30 of chatting. Mom has been taking me out on short outings once or twice a week to get me back "in the world" as well as work on mental stamina -- go to a quiet store, or the library, small restaurant, etc. It's more stimulation than I have at home alone, but not too overwhelming. Afterwards I usually have to spend much of the rest of the day doing "easy" activities, but I am able to process more noise and travel bit by bit. Car travel is tiring (is it the visual stimulation? :huh: ) but more bearable -- most of the time I don't even have to have my seat tilted back very far now. Why? Have you noticed any trends?

I forgot to mention that I started using a light box (like people with SAD) about 2 weeks ago because we had noticed that I did much worse on cloudy/rainy days even though I never exhibited SAD symptoms before. :huh: My dad & I hunted around for articles about it and found some studies in which some people with CFS noticed some improvement of symptoms when they used a light box. Let me emphasize those "some"s :) -- the studies did not encompass the full spectrum of CFS patients, nor did they demonstrate improvement of all CFS symptoms. I guess the reasoning goes that because so many people with CFS don't get out of the house much, they don't get as much exposure to sunlight as the brain requires; for a portion of the CFS community, that extra dose of sunlight from the light box is enough to improve cognitive function enough to alter the severity of certain symptoms. Quite fascinating really!

At any rate, we were willing to give it a try & my new PCP gave the go ahead. My mom's boss was kind enough to lend me his son's lightbox (son is away at school now), so for the past 2 weeks now, I've been up bright and early at 6:45 each morning with my lightbox going and have indeed noticed some changes. I am able to accomplish more on overcast days, as well as "start my day" earlier than before. I used to have major trouble doing anything before 10am (even if I was waking up at 6:30 or 7:00am), but now after 30 minutes in front of the lightbox, I'm able to do quality exercise and studying. I've also been able to stop taking Melatonin to help me sleep since I started light therapy. It is by no means the golden key to my heightened level of activity -- that started 2 weeks before -- but I am finding it worth my while.

Thanks again for your encouragement!

Angela

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Thanks for sharing your great news. I love seeing this kind of post. Would you mind filling us in on your "POTS story"? How old were you when you developed symptoms? Did a virus set it off or a growth spurt or something that could be identified? When and how did you know you were getting better? Is your heart rate staying down or does it still go sky high when you stand up? My daughter seems to be getting better, too, but I don't know how to gauge it..... any insites to share? Thanks so much!

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Angela,

Church, of course, is sitting, and for me on Sundays, it's about 2 1/2 hours total (with breaks, of course).

When POTS first hit, I was miserable sitting, really miserable. But I pushed myself to get to church and to stay there. (Prayer helped as well.) I believe after 2 years, I'm better at sitting than I used to be before I exercised and pushed myself to sit.

There were many times it wasn't fun at all, but I wanted some level of normalcy. I still really dislike anything to do with car rides. My opinion is that my blood does not circulate well when my body is in the car. I start feeling really bad usually after 20 minutes, though exercise has helped this somewhat.

In the car I put a pillow under my butt (to raise it), and a pillow behind my head as I recline. This helps keep my body in my "usual" reclining position, and hopefully allows me to last longer.

Another hint: For standing in line (and working the calf muscles), I rock up and down (ever so slightly so I don't look stupid) on the balls of my feet to flex the calves. This allows me to wait on the check-out lines a little longer without feeling really ill, light-headed, or dizzy.

Exercise definitely helps. It allows me to do more. The reason I know is, when I came down with the flu last year, and was "out of it" for about 1 week, I felt much worse for a while after. It took me a really long time to work up to anything again. Also, lack of good sleep really makes me feel poorly.

I am still unable to work because of my lack of CONSISTANCY. I do not know from one minute to the next if I can commit to anything. Some nights I don't sleep well and it's all over. Some days it feels like I have a virus and don't feel well. Some days I've overdone it, and I need to take a nap to recover, etc.

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Guest Mary from OH

:huh::huh::(:):):):):D:D:D

YAY ANGELA!!!![/size

I'm so proud of you!! Pretty soon before you know it you'll be gradually practicing your ballet again!! I can see that day just around the corner. You could begin with just beginning steps again, just as if you were "relearning"!!

I pray your "physical rehab" program continues to work for you! It couldn't happen to a nicer person. I'll let Marissa know. She will be thrilled!!

All our best to you!! We love you!!

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Wow, I am happy you are doing so well. Its nice to here some hope. I am really down right now, but its nice to here good things. I hope things keep going good for you!

Amy

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it's SO great to see you (we've missed you) and i'm SO happy to hear all of your good news. thanks for stopping by to say hi and share all of your progress. yippee!!!

:) melissa

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YAY ANGELA! I am so happy for you :(

Thanks so much for comming back to share your good news. It does lift spirits when you hear about people making improvements.

May i ask if you get muscle pain with your CFS? I was just wondering as i was fine going back to the gym but then after the third day my muscle pain came back and it means that i find movement very hard. I am just looking for hints to be able to get through the muscle pain so i can keep up a exercise regime...

You must really miss dancing. I hope you are able to dance again soon xox

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You all are great! Thanks for celebrating with me!

WI Mom, you expressed interest in my story. I'll give you the short version.

In Feb. 2004, I was just recovering from a bizarre 5-month migraine -- that horrible headache all day & night for 5 months straight along with sporadic loss of vision, loss of feeling in one leg, poor sleep, poor memory, always feeling cold, sensitivity to light and noise, shaking hands, etc. Neck X-rays showed that my C2 vertebra had popped out of place & gotten twisted (I still haven't a clue how that happened :huh: -- no sudden trauma or pain that I can think of). Through readjustment of vertebrae in my neck by a Chinese orthopedic surgeon (very gradually over 6 weeks) and weekly acupuncture (2 months), I returned to dancing and normal life without any further symptoms.

I moved to NYC (SO happy to skip the daily commute!) and was studying to become a professional ballet dancer. I had a late start (age 13 1/2), but showed considerable promise; at that time I was studying at American Ballet Theatre taking class alongside many of the stars of the ballet world -- you can imagine how thrilling it was for me! :)

I was completely fine in March 2004 (age 20 by the way), but in April, I bagan to have difficulty with tremendous fatigue. Then I began to have episodes of my heart racing, shortness of breath, and greying vision. My memory began to get worse (much to the frustration of choreographers I was working with!) -- I would find myself not knowing where I was or where I was supposed to be going bad news whe you're living in the city!. I did full cardiology work-ups and other tests looking for more unusual conditions, but all that came of it was that my heart was perfectly sound & that my BP dropped 20+ points when I stood up.

Florinef and increased sodium intake helped initially, but my condition continued to deteriorate. I had gradually cut back my dance schedule to the point that I was not taking any ballet and only a little ballroom (which was less of a stress on my body). A TTT proved "inconclusive" even though I felt so tremendously wretched during it and for the following 2 weeks. Finally in July 2004, I collapsed at my parents' home in NJ after a ballroom performance, unable to return to the city. I've been living here since then.

My symptoms continued to get worse: fainting when standing, feeling lightheaded when sitting up too long, really bad brain fog & concentration, difficulty speaking/following conversations...the list goes on. I saw an electrophysiologist at UPenn in September 2004 whose initial diagnosis was POTS and recommended I see an expert on it. Dr. Low saw me in April 2005, confirmed the mild POTS and CFS diagnosis, and gave me a new treatment regimen. He was pretty sure he could handle the POTS, but said that the CFS was anyone's guess as to when or whether I'd get over that.

The Mestinon has totally controlled the POTS end of things so long as I don't overtire myself -- when I do, the POTS symptoms come back (although in a lesser form than before I began the Mestinon). The NeuroHelp supplements did help to a point with energy and brain function although in my excitement at regained energy I overdid things a little and began a plunge to the POTS hole. :D It was very foolish of me, but I learned. :) This time around, I'm being much more careful about pacing myself.

Right now, I plan to continue with a graduated exercise regimen & see where that leads me. In the meantime, my dad and I will continue to look at other possible solutions to the various symptoms. I must say, I'm getting a superb medical education out of all of this -- when I can remember everything I'm learning! :lol:

As for your questions:

1) Since I was 20 when the symptoms started I don't think puberty or growth spurts had anything to do with it. I didn't have any virus or illness, either, to attribute the sudden onset of symptoms. I think that the neck problem is more suspect, although none of the specialists I've seen have said anything to that affect.

2) It was very apparent to me when I was getting better, although I hate to make it sound as if this is a permanent "cured" situation -- we have no idea if or for how long this will last.

Just being able to sleep at night reduced some of the more peripheral symptoms (e.g. always feeling cold) -- I could get by comfortably wearing a turtleneck and wool sweater indoors as opposed to 3 sweaters, a parka, and gloves.

When the Mestinon began to kick in (about 3 weeks after starting it = mid-May 2005), I stopped fainting fully and I could stand/ sit up for a longer amount of time before feeling lightheaded. That has gradually improved over time allowing me to do so many things now that I couldn't before -- take a shower, stand up to do arm weights, etc. It was not a lightning-fast sudden change, but I evaluate my abilities throughout each day and keep track of changes that I've noticed. I'm very much in favour of celebrating the little steps -- my mom and I have had frivolous little celebrations at home over little things that I've been able to do such as taking a serving bowl out of an overhead cupboard without getting lightheaded, walking down the driveway and picking up a garbage can, or taking a shower without feeling lightheaded. :)

The fatigue has been the most disabling symptom and the hardest to gauge. I do have very sensitive body awareness (that's what comes from being a dancer!) so I have an easier time feeling the minute changes each day than some other people. But again, if you pay attention to how your body manages energy each day and watch for trends over each week, you will notice patterns. For me, about a week after I took the NeuroHelp supplements, I hopped out of bed full of energy. I just knew I could do more than usual. Of course then I was too zealous and overtired myself, resulting in a downward spiral. I rested for a few weeks to give my body a chance to get over it and then gradually began to try to build my endurance. One day I would make a sincere effort to walk around the perimeter of the living room. Once I could do that comfortably on a regular basis, I would try adding on more rooms. From there I worked on walking down the driveway and back. The goal is to work your body a little more without exhausting yourself -- over time you should be able to accomplish a little more than before.

There is such a thing as starting exercise too soon. I had a doctor that encouraged me to start walking before my body was ready and, sure enough, calamity ensued. As soon as I started I knew my body was too tired and by the time I finished my brief walk, I was totally wiped out. The exercise should not exhaust you -- challenge you, yes, and perhaps make you feel a little tired from the work, but not exhaust you or make you feel ill. Better to start with small exertion like ankle flexes or leg lifts in bed and walking around rooms in the house. From there you can work up. I'm very big on keeping an exercise log, too, so I can make sure I'm not trying too much to soon. It's also helpful on those days your body isn't up to much exercise -- you can look back and say, "Hey, maybe I can't walk quite as far today, but at least I'm doing more than I was two months ago!" Don't be overwhelmed by disappointment on those "recuperation" days; all bodies need them. I try to think of them as vacation days -- doesn't always work, though :). I also try to stick to a general routine -- flexible enough to cater to my body's needs, but structured enough to encourage me to live more normally.

Chalk up another epic post to my record! :) Sorry this is so long, but I do like to be thorough. If you or your daughter ever wants to talk or ask questions, I'm very happy to help in whatever way I can! PMs are welcome! :)

Angela

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Evie, yes, I miss dancing so very much, but I am feeling excited about the prospect of starting again in the future.

I have had some muscle pain -- not consistantly, but occasionally. For the most part I try to avoid overuse muscle pain by stretching extensively before activity and getting my body good and warm before beginning more taxing exercise. I also make sure I start with a low number of reps and gradually increase from there, focusing on quality of muscle usage rather than number. Things that are more difficult for my body in the Pilates matwork I save until later in the day when my muscles and joints are more loose and less stubborn. :)

As for unexplained muscle pain (when my calf muscle starts throbbing when I'm lying down doing nothing :lol::huh::D ), I avoid doing things that will stress that muscle more. I may focus more on stretching and arms that day and reduce the amount of walking I do. I'm not sure if the pain is caused by some nerve going haywire or what, but I figure there's no reason to stress he muscle out any more. Usually it goes away on its own. I don't experience this pain on a regular basis, so I've never bothered looking into medicine or anything like that.

Did you have this pain before you began at the gym? Is it part of a pattern? Could it be your muscles reacting to finally being used again (sometimes that kicks in 2-3 days afterwards and disappears as you continue in your exercise regimen), or does it really feel more like that peculiar unexplained, CFS-related pain? Do you have someone who can look at your technique to see if there's something there that causing your muscles too much stress? Are you getting enough potassium? Just a few ideas you might want to think about. Hope you can come up with something so you can enjoy your therapy!

Angela

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Angela,

Thanks so much for sharing your story! I really appreciated reading it and I hope you continue to make progress. Another question came to mind as I read......did you try midodrine before the mestinon or did Dr. Low go right to mestinon and if so, do you know why? Did some test lead to this choice?

Thanks again, and keep us posted on your recovery!!!!!

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WI mom,

I tried Midodrine before I went to see Dr. Low -- my cardiologist thought it might do the trick. Unfortunately Midodrine and I do not get on very well together <_< ; I was far worse on it than before! :) I was very sick to my stomach, all my symptoms got worse, and half the time I wasn't even really aware of what was going on -- it was as if I was stuck in a blurry time lock and couldn't get out. Very, very strange and disturbing episode in my life :unsure: -- after 3 weeks I stopped taking the pills and told the cardio just how much worse it made me feel.

Mestinon was Dr. Low's first preference for medication for me, although he didn't explain why he chose that over others. He explained the mechanisms of POTS (at least in my case) and said that the way Mestinon works, it might correct the problem. He suspected that it would work in my case, but had some other ideas if it didn't. Part of it might have been that fact that my POTS was apparently mild compared to most of you on the forum. It was enough to severly disturb my lifestyle, but my HR didn't appear to go really hog-wild on moniters. My HR started at 38, so most doctors were hesitant to put me on beta-blockers or anything else that might drop it lower.

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  • 10 months later...

Hi Eillyre,

I thought I would see if you are still using Neurohelp, and if you believe it is helpful? I have POTS myself, and now my Mom is going to start Autonomic testing at Mayo Clinic with Dr. Fealy. We were wondering if this is something to bring up to him since he works with Dr. Low. We are both so sensitive to medications, and thought it would be nice to see if a supplement might help. I went online to neurohelp.com and only found one for neuropathies. I didn't see the Neurohelp essential. Thanks for your help.

You all are great! Thanks for celebrating with me!

WI Mom, you expressed interest in my story. I'll give you the short version.

In Feb. 2004, I was just recovering from a bizarre 5-month migraine -- that horrible headache all day & night for 5 months straight along with sporadic loss of vision, loss of feeling in one leg, poor sleep, poor memory, always feeling cold, sensitivity to light and noise, shaking hands, etc. Neck X-rays showed that my C2 vertebra had popped out of place & gotten twisted (I still haven't a clue how that happened :) -- no sudden trauma or pain that I can think of). Through readjustment of vertebrae in my neck by a Chinese orthopedic surgeon (very gradually over 6 weeks) and weekly acupuncture (2 months), I returned to dancing and normal life without any further symptoms.

I moved to NYC (SO happy to skip the daily commute!) and was studying to become a professional ballet dancer. I had a late start (age 13 1/2), but showed considerable promise; at that time I was studying at American Ballet Theatre taking class alongside many of the stars of the ballet world -- you can imagine how thrilling it was for me! :)

I was completely fine in March 2004 (age 20 by the way), but in April, I bagan to have difficulty with tremendous fatigue. Then I began to have episodes of my heart racing, shortness of breath, and greying vision. My memory began to get worse (much to the frustration of choreographers I was working with!) -- I would find myself not knowing where I was or where I was supposed to be going bad news whe you're living in the city!. I did full cardiology work-ups and other tests looking for more unusual conditions, but all that came of it was that my heart was perfectly sound & that my BP dropped 20+ points when I stood up.

Florinef and increased sodium intake helped initially, but my condition continued to deteriorate. I had gradually cut back my dance schedule to the point that I was not taking any ballet and only a little ballroom (which was less of a stress on my body). A TTT proved "inconclusive" even though I felt so tremendously wretched during it and for the following 2 weeks. Finally in July 2004, I collapsed at my parents' home in NJ after a ballroom performance, unable to return to the city. I've been living here since then.

My symptoms continued to get worse: fainting when standing, feeling lightheaded when sitting up too long, really bad brain fog & concentration, difficulty speaking/following conversations...the list goes on. I saw an electrophysiologist at UPenn in September 2004 whose initial diagnosis was POTS and recommended I see an expert on it. Dr. Low saw me in April 2005, confirmed the mild POTS and CFS diagnosis, and gave me a new treatment regimen. He was pretty sure he could handle the POTS, but said that the CFS was anyone's guess as to when or whether I'd get over that.

The Mestinon has totally controlled the POTS end of things so long as I don't overtire myself -- when I do, the POTS symptoms come back (although in a lesser form than before I began the Mestinon). The NeuroHelp supplements did help to a point with energy and brain function although in my excitement at regained energy I overdid things a little and began a plunge to the POTS hole. :lol: It was very foolish of me, but I learned. :) This time around, I'm being much more careful about pacing myself.

Right now, I plan to continue with a graduated exercise regimen & see where that leads me. In the meantime, my dad and I will continue to look at other possible solutions to the various symptoms. I must say, I'm getting a superb medical education out of all of this -- when I can remember everything I'm learning! :)

As for your questions:

1) Since I was 20 when the symptoms started I don't think puberty or growth spurts had anything to do with it. I didn't have any virus or illness, either, to attribute the sudden onset of symptoms. I think that the neck problem is more suspect, although none of the specialists I've seen have said anything to that affect.

2) It was very apparent to me when I was getting better, although I hate to make it sound as if this is a permanent "cured" situation -- we have no idea if or for how long this will last.

Just being able to sleep at night reduced some of the more peripheral symptoms (e.g. always feeling cold) -- I could get by comfortably wearing a turtleneck and wool sweater indoors as opposed to 3 sweaters, a parka, and gloves.

When the Mestinon began to kick in (about 3 weeks after starting it = mid-May 2005), I stopped fainting fully and I could stand/ sit up for a longer amount of time before feeling lightheaded. That has gradually improved over time allowing me to do so many things now that I couldn't before -- take a shower, stand up to do arm weights, etc. It was not a lightning-fast sudden change, but I evaluate my abilities throughout each day and keep track of changes that I've noticed. I'm very much in favour of celebrating the little steps -- my mom and I have had frivolous little celebrations at home over little things that I've been able to do such as taking a serving bowl out of an overhead cupboard without getting lightheaded, walking down the driveway and picking up a garbage can, or taking a shower without feeling lightheaded. :)

The fatigue has been the most disabling symptom and the hardest to gauge. I do have very sensitive body awareness (that's what comes from being a dancer!) so I have an easier time feeling the minute changes each day than some other people. But again, if you pay attention to how your body manages energy each day and watch for trends over each week, you will notice patterns. For me, about a week after I took the NeuroHelp supplements, I hopped out of bed full of energy. I just knew I could do more than usual. Of course then I was too zealous and overtired myself, resulting in a downward spiral. I rested for a few weeks to give my body a chance to get over it and then gradually began to try to build my endurance. One day I would make a sincere effort to walk around the perimeter of the living room. Once I could do that comfortably on a regular basis, I would try adding on more rooms. From there I worked on walking down the driveway and back. The goal is to work your body a little more without exhausting yourself -- over time you should be able to accomplish a little more than before.

There is such a thing as starting exercise too soon. I had a doctor that encouraged me to start walking before my body was ready and, sure enough, calamity ensued. As soon as I started I knew my body was too tired and by the time I finished my brief walk, I was totally wiped out. The exercise should not exhaust you -- challenge you, yes, and perhaps make you feel a little tired from the work, but not exhaust you or make you feel ill. Better to start with small exertion like ankle flexes or leg lifts in bed and walking around rooms in the house. From there you can work up. I'm very big on keeping an exercise log, too, so I can make sure I'm not trying too much to soon. It's also helpful on those days your body isn't up to much exercise -- you can look back and say, "Hey, maybe I can't walk quite as far today, but at least I'm doing more than I was two months ago!" Don't be overwhelmed by disappointment on those "recuperation" days; all bodies need them. I try to think of them as vacation days -- doesn't always work, though :). I also try to stick to a general routine -- flexible enough to cater to my body's needs, but structured enough to encourage me to live more normally.

Chalk up another epic post to my record! :) Sorry this is so long, but I do like to be thorough. If you or your daughter ever wants to talk or ask questions, I'm very happy to help in whatever way I can! PMs are welcome! :)

Angela

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ArtC,

You're right -- the NeuroHelp essentials are no longer in existence. The company changed the product(as I recall, something to do with change in suppliers or something like that). I still have a little left of the old variety (I bought several months last time I ordered), but will have to look at my options for an alternative within the next month. Dr. Low did say that he thought that the alpha lipoic acid & b vitamins were probably the most effective components of the mix (if I remember correctly), so I may try finding another mix that has them.

At this point in my recovery, I don't find the NeuroHelp supplements essential to my health in the sense that I don't function much worse when I've missed doses. I am still battling cognitive issues, however, and think that anything I can do to help the old brain is worth it, so I will try to find something to take the place of my present NeuroHelp mix. Dr. Fealy may have some suggestions along that line for you. If he does, I'd love to hear them. :lol:

Sorry not to be of more help! Best of luck at Mayo!

Angela

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