Alaska

I have been having twitches with my legs, feet, arms and hands. The twitching was one of my first symptoms 4 years back before all the rest of the stuff. Not sure what connection it has? This week the twitching was much worse and I also was feeling more out of it, with a dull / strange feeling headache. That's why I wondered if they are possibly migraine related for myself. Haven't been diagnosed with migraines yet though. I should say that today the twitching isn't as bad and I feel better overall.. only difference is I took a Complex B vitamin today. They looked at my B levels and they were fine, but wonder if that has anything to do with it??

I've been diagnosed neurally mediated hypotension. I have started to realize that my dull headaches that come along with increased muscle twitching could be a migraine. During these "migraines" is when I feel worse and have more problems focusing. So, what's the research out there on this. Do I have headaches or migraines because of low blood flow to the brain or are these migraines causing autonomic dysfunction?

I really took this seriously and purchased a new bed for over 2,500 bucks to make it happen. I have the head elevated probably between 10-12 inches. It's been about 9 months and I hate to say I don't think it helped. If anything, I think I have been having more surges where I wake up in fear/panic, probably because my blood pressure drops and my body is saying "lie down" but I'm elevated. I've actually thought about putting in down again. But, this week I have been sleeping better? So, for me, I don't think it's helping.

Just saw this today. I think I may be staying away from rice for awhile?? http://www.ktuu.com/news/la-fi-mo-rice-arsenic-consumer-reports-20120919,0,3458602.story

I had the slower heart rate thing and irregular heart beat... then I didn't take it anymore

I posted last week how I re-started my adderall XR 20 mg with good results. I only had 4 more this week before I could get another refill from the Doc, so I didn't take it over the 3 day weekend, so I was on nothing. OH man, this weekend was ruff. I felt out of it and had very little energy and was snappy. Back at work this morning and took Adderall again and what a huge difference. More alert, more focused, more energy, don't have nearly as many recurring thoughts in my head of "I'm dizzy" or "how am I doing"... likely because I'm doing ok. I feel more normal, like back before all this stuff happened. So, I'm going to ride with it. BUT, I do wonder if the adderall is only covering up two things. First one is probable, and that is sleep issues. I wake up like 10 times a night. My sleep study dx me with sleep arousal disorder. I wonder if adderall is simply helping me be awake. Second thought is do I have adrenal fatigue? I'm thinking about this because adderall, although it is helping, will only cover the problem and I will never get better. Adderall will make it worse over time I'm sure. The other probable thing is that Adderall is immediately increasing my blood pressure and heart rate. Like I just took it now, and it's 127/74 and 70bpm. It's usually 12/63 and 60bpm. I'm just happy it's helping!!

I take Adderall now, but I can only tolerate the extended release and not the immediate release. I tried to save money and do the immediate release (as it's cheaper), but I think it activates too quickly and then leaves the my body too quickly... which causes more dizziness. The extended release adderall seems to be a more gentle up and then down.

No, my blood pressure is pretty good, like 120-130 / 70-80. I have NMH. I tend to feel the worst when sitting still and when having to process mentally (like talking). For example, I can probably drive hours by myself. BUT, add children in the car or anybody else, it seems to put my mind on overload. So, that Adderrall helps with that because it targets the frontal lobe of the brain which is in charge of filtering external stimuli (among other things). So, Adderrall is increased my blood pressure (which helps with the NMH) and it is helping with my processing issues and I'm less overstimulated it seems. It's day two on the Adderrall and at work I feel immediatly 50% better and ABLE to work!! Like I said, I think the adderrall stopped working as well because you can grow a tolerance to it. Over the year that I was on it, we never increased the dose. Now I know better. I feel like I have a new life again. I have also been motivated to schedule in more clients in. I hope it keeps up. I should say that there are other ADHD medications out there that are not stimulants, which my now raise blood pressure. These non-stimulant ADHD meds require time to build in your system though.

Well, it's the end of my work day. I have to say my day was MUCH better with the Adderrall. The dizziness was much reduced and mental clarity was much better. The great thing about that medication is that it works right away and you will know if it's helping or not. So, I'm actually ending the day more optimistic that stimulants or Adderrall are my answer at least for now. Overall, much better day after the Adderrall. I hate having to take it though, for long term. It does mess with my sleep also.

Just an update. I have been doing the tilt training and haven't noticed a difference yet. I must admit, I probably do the tilt standing 5-6 days out of 7 days of the week. So, I miss some days. But, 85% of the time I'm doing it. I don't get pre-faint symptoms standing, but have to stop after 30 minutes because my feet hurt so bad.

About 6 months ago I stopped Adderall XR 20mg because even though I think it helped, it didn't seem to be helping much anymore. So, just focusing on the last 6 months I tried midodrine and mestinon. In addition to that, have been running almost every day, which I think I'm in the best shape since high school (I'm 38 now). I have been doing tilt training (standing against the wall 30 minutes a day). The head of my bed is tilted and pretty high (I think like 14 inches) for the last 8 months. I have started daily meditation. I have increased my salt. I eat really well (well most of the time). I try to get enough sleep. I stopped mestinon because I was getting skipped heart beats and that made me too self aware, and that in turn made me feel more anxious, which made me dizzy and pre-faint. So that was stopped. So I have only been on midodrine the last 2 months, in addition to the non-medication stuff. I have been feeling worse overall and have had to reduce my caseload the last 3 months and do things like have my wife drive when possible. But lately I have been feeling more down about it. We went to the state fair this week and couldn't go on rides with my son, who is 5. This week was his birthday and the birthday party I could never relax because I am so overstimulated, which makes me have pre-faint symptoms. But today, first day of kindergarten for my boy (very special day) I started feeling so dizzy and had such pre-fainting that I thought I was going to pass out. I had to leave for a few minutes when he was lining up with the class. Luckily I regrouped and was able to get to him, but with a lot of effort. I know you guys know what I'm talking about, but I really started to feel down about it. So, I have stopped the midodrine and had one of my Adderall XR 20 mg today. After taking this I felt much better. The hardest thing this NMH has done is made it hard for me to think and not get overstimulated. The Adderrall fixes that. I was able to focus on conversation better, had much less dizziness and felt happier and more focused. SO, maybe it wasn't working as well for me in the past because I grew tolerant of it. But I'm giving it another try. Oh, and I have ADHD anyway, so it helps with that. For those that have tried many other things without success, Adderrall might work for you. As a not, I need the extended release, as the instant release makes me feel worse. I will keep those updated that care to hear about it.

I have the most problems when sitting still. Seems Midodrine helps me more when I'm having to stand a lot, and not as much when I'm sitting. I'm on the fence right now about taking it at all, as sometimes I wonder if I feel worse. I was taking Midodrine in combination with Mestinon, and seemed 20-30% better. But, then my heart started having slow beats, missed beats which made me way too self aware and the being too self aware is when I start feeling bad and dizzy and fearful. Before all of this I was taking Adderall, and it was helping some. I may go back to Adderall to see if it works again.

When I don't have to think or mentally process a conversation

Your comment is so true for what I think we all say, "I made it through". I often will tell my wife when she will ask "how was your day" and I will say "I made it"... and not joking, just glad I made it another day. THIS IS NO WAY TO LIVE LIFE! I SO hope we all can start living life and find solutions!

I was on vacation this week and had some more time to thing about stuff. I was just wondering why I (and others on this forum) are not diagnosed as chronic fatigue syndrome. I sure seem to have the symptoms of it. Right now the Doc is going with neurally mediated hypotension. I guess I'm wondering if having the diagnosis of CFS would make any difference to treatment. Also, is CFS really even accepted by doctors now? Doesn't seem like it is. I have seen studies where a large percentage of people with CFS have positive tilt table tests.

Just an update on my tilt training. Went on vacation last week and only did tilt training half the time for a week. That *****, because I really want to give this a shot. I'm sure that is what happens to a lot of people doing this. Some of the days I didn't do it there "just wasn't time" or I "forgot". Then two other days my foot was hurting out of the blue where it was hard to walk, so it hurt too much to even just stand on it. But, I plan to get back into it tonight. I guess at least I did it 50% of the time. Part of me wonders if this is really even going to help. I'm sure that's a big part of a lot of people not doing it. But wouldn't it be cool if it did!

And you know, tomorrow it might be back to 3 minutes and that's ok... but looks like you are building more tolerance standing. That's great! Let's hope for 5 minutes tomorrow!

See, it's working !!

It's good to have you on board McKenzie and McBlonde. This is who I have so far that have joined this group to try the daily tilting and when you started (let me know if I missed anybody): I hate bananas (7-24) Sebro (7-25) Angelloz (7-25) McKenzie (7-27) McBlonde (7-28) Keep it up guys! I have to admit, after more than a week going strong I simply forgot to stand on the wall two days ago, as I was camping and didn't think about the tilt training. BUT, I think this isn't going to be a big deal as long as you go for every single day. Even if you can simply get to 2 minutes, like McBlonde. McBlonde, we are just happy to see you doing it. Before you know it, you will be at 5 minutes then 10 minutes. Wouldn't that be great! Now, I've been noticing I can only get 30-35 minutes until the bottom of my feet hurt so bad I have to stop. It's not my whole foot, just the bottom and more the outside bottom of my feet. Is that pooling, or would anybody get that if they stood still that long. Now, I don't wear shows, so maybe I should try it with shoes on. I have to also say, the whole thing has made be wonder about my tilt test I did. I can go 30 minutes with NO mental symptoms of dizziness or anything. When I did my tilt test, I past out in less than 10 minutes and felt horrible in 5 minutes.. like being dizzy and wanting to throw up. So, I need to ask the Doctor what the difference. Was it because while I was doing the tilt test somebody was talking to me and I had to mental process. Mental processing is my major trigger. When doing the tilt training at home, I'm just watching TV. No mental stuff. Just curious about it. Makes me even question if I diagnosed right. I think if I have NO changes in symptoms in 4 weeks, it will make me wonder more. But, I am still doing the tilt training. If anything, I think it's good for the body and burns some calories. Another thing I might try is to lie down for 10 minutes then get up and start the tilt training. Maybe this would push my body a little harder, similar to the tilt table test??

You may want to wait, or just do what you can. I would for sure wait until after the baby is born... very exciting by the way. After that, just come back to this forum and tell us you are going to give it a try. Do the best you can and I say at least commit to doing some tilt training time during the day... even if that means 15 minutes. Glad to hear you want to try with us. As for me, I have been doing the standing this entire week, one time a day for 30 minutes. I have also been trying to just stand more, like when reading emails on my iphone (rather than sitting). I noticed the last few days I have actually felt worse, but I'm almost certain it has nothing to do with the tilt training. I discontinued the mestionon that I am on, as it is giving me an irregular heart beat and seems to be slowing my heart beat. I had discontinued this medication before due to an irregular heart beat, not being sure that this medication was causing it. After a few weeks it went away. So, I restarted again this month... and noticed the irregular heart beat. So, pretty sure it's the mestinon. One interesting thing about the tilt training I have found. For 3 years now I have been having a burning sensation on my lower right leg, about a quarter size. We thought it could be some neuropahty. BUT, when I do this tilt training, when I am done with my 30 minutes and lean forward to turn off the timer, that same place in my leg has severe pain when I lean forward. SO, I was thinking that pain could be blood pooling pain. I have never really had signs that blood is pooling, but maybe that burning pain is blood pooling?

From what I know, you work up to the 45 minutes per day and the one study had participants do it for 6 months. So, I'm not sure how long one would need to continue after the 6 months. BUT, I would be impressed for those that can do it daily for 6 months. There seems to be not much to it, 1) find a wall and 2) standing with your back to it. I'm giving it a try. I want to find some control if this thing. So Serbo (Aaron) I got you down trying with us!! Cool! Keep us up to day with your progress. I think the idea to have the back against the wall and feet a little out is so that if one faints, they will drop down to a sitting position and not hurt themselves. So, I assume if you know you are not going to faint you could stand straight up without the wall, as long as you are staying still. Somebody chime in if that isn't the case. So Angelloz, I got you down to. Keep us up to date on how you are doing. I have to say, at first only I-hate-bananas was going to do it with me and was surprised that others were not going to try this with me. But I'm happy to see a few more jumping in... I should say standing in.

Here is another article about tilt training from Harvard. In this they say " Every few days, add a minute or so to the standing time until you can do 20- to 30-minute sessions without feeling faint. After that, try to do 20 minutes of wall standing three to four times a week. " The part about tilt training is on the bottom of this article. http://www.health.harvard.edu/newsletters/Harvard_Heart_Letter/2009/August/When-the-lights-suddenly-go-out

completed my 30 minutes tonight and also decided to just throw in 15 minutes sitting still, as sitting also causes problems for me. I think if you can just get one minute to start, then thats good enough. I think the main idea is to retrain the body. I never pass out either but have all the pre-fainting symptoms. So, my hope is to get rid of those. On the tilt table I passed out in 10 minutes.

So anti-bananas, are you in with me then?

I think the main idea is stand as still as possible, with arms down if possible.