Dizzysillyak

I used to be really bad about this. I'd lost so much that it hurt ... but then I started looking at all that I still had. I could stay at home with my daughter and be the home that her freinds with working mothers could come to. Even tho I felt like crap I enjoyed that ... It gave me a sense of purpose. We each need to find our own. Now that I've taken a holistic approach to my health, I'm hopeful that I can recover. Even after 22 years. I realize that if it doesn't happen at least I gave it my all ... My kids realize this too. My family, doctor worshippers and SAD eaters, all thinks I'm nuts ... tc ... d

Ok, I just went to your link. It says the orig post was removed .. What's up ?

I'm positive for pots so I never looked at this .. But out of curiosity I googled "why does heart rate drop after exercise" and found some good info. It looks like a normal drop within two minutes but I only saw a 10 - 20 pt drop mentioned within the first minute. Hope someone else knows for sure .. Tc .. D

I could be wrong, but I thought this was what hearts are supposed to do. And this is why we're told it's best after exercise to to slow our hearts down while still upright by walking, then sit and then lay down. I notice if I've been doing anything that gets my hr up, this is what I have to do. Have you had a tilt table test ? Imho That's really the best way to define orthostatic intolerance. You can do your own too. Tc . D .. Ps . You may want to look at your diet for food intolerances and nutritional deficiencies. Dr terry wahls has some great info on this.

I tire easily but recharge by laying down and eating regularly (every hour at least). I've been a gf celiac since 2005, but I may not have healed properly. I've needed to eat food to function every hour since 2005. I can only be up for a few minutes without feeling the effects of blood pooling so that may explain it too. I wonder what we have in common that explains why or why not we're fatigued. I'm sure there are multiple possibilities. I'm not sleepy. My upper body just feels drained of all blood .. Tc .. D

Rather than look at this from the victims point of view, I'd be interested in how medical professionals got the idea that patients, esp women, aren't to be respected. I can understand not trusting a patient who shows up asking for pain meds on a regular basis, but not respecting patients as a rule doesn't make sense. So is the stigma being taught by med schools, social circles, or is it inherit in the "caring" environment ? We see this same disrespect from some carers and most social classes ... Good luck on your thesis. Tc.. D

Um, fwiw, gluten kept me from walking for 16 1/2 years, so diet is big .. Have you seen theglutenfile ? I'm a little concerned that he didn't mention how important diet is. So far, I've only met 2 - 3 people who've seen integrative doctors who didn't mention this. They said that they weren't successful and wasted a ton of money. Two of them are on pheonix rising .. If you want names, you can pm me. I hope I'm not being a pest. I'd hate to see you waste your time and money. Maybe the correct term for what my doc is doing is functional medicine and not integrative. Dr terry wahls describes my experience in her ted video and she uses the term functional medicine. Tc .. D

Did he mention diet ? That was probably the first question my integrative doctor asked me. My answer was that I was on the paleo diet, which was good, so we moved on to nutritional deficiency testing, stool tests and hormone tests. Plus she's run all kinds of bloodwork I'd never heard of. I've learned a great deal about my body from all these tests but I haven't improved like I'd hoped. I have extenuating circumstances tho. For the most part, I can't afford the treatments, I'm too tired to follow what I'm told to do and at 56, I have damage from years of eating the sad, esp gluten. I can't say that my bp went down with magnesium because it's gone down at times before I took anything. My norm is 95 - 115 over 85 - 70 ish .. Salt does more to keep mine up than anything. I'm excited to hear how this works out for you. Tc .. X

Hi jen, I'm not sure what you mean by relatively new. Has this been evaluated by your doctor ? Have you been prescribed any seizure or anxiety meds like klonopin ? I have nocturnal myoclonus so I do something similiar to this every nite when entering rem. It's gotten significantly better since going gf but not gone. But, I did this non stop for two hours last year and ended up in the er. Lucky for me, I was at my doctors office when it happened. I was feeling pre seizure or hypoglycemic so I popped in to get her opinion on what was happening. Then the sheet hit the fan ... Lol .. I don't know if my body stopped on it's own or I was given iv drugs. I had an iv but I don't know what was in it. Klonopin or even theanine can help me with this depending on the severity. If it's new and if I had your history, I'd go the er. Better safe than sorry .. Tc .. D

Hi rich, I tried but I'm too tired (PEM) to follow all of this today but I wanted to comment on the above statement ... I thought the same thing. When my hr was up I tried to do some exercise to see what would happen and landed in the bed within a a minute or two. Winded and totally out of it ... Are you saying that your hr and bp only go up too high if you're under stress ? Is this the same as saying that you have a short fuse ? ; ) My hr has gone up past my normal when I had h pylori and when I had a uti. It just dawned on me to see if this is normal when our bodies are fighting an infection. Have you looked for infections yet ? parasites, h pylori, lyme, etc ? Or have you tried anything like grapefruit seed extract or oil of oregano to see if it helps ? TC ... d

More on tyramine ... http://en.wikipedia.org/wiki/Tyramine I wonder if there's a thyroid / tyrosine connection here too. I have hashimoto's ...

Rich, what you quoted above says why it' can be deadly. so I'm not sure what you're asking ... btw tho ... did you read the cause and differential diagnosis section ? It lists foods with tyramine, serotonin syndrome, etc ... I'm still having some breathing and heart issues so I'm interested in this too .. I'm waking up with breathing problems and feeling like my heart is pounding but nothing too serious and it doesn't last. I actually spent several hours cleaning my apt yesterday. I'd been eating some fermented foods, homemade coconut kefir and sauerkraut, and stopped because I thought they might be causing problems due to bacteria. I didn't realize the tryamine connection ... Stopping this could be what helped me. I copied this in from wiki ... I'm just ignoring the drug connection given here since I "think" under certain circumstances our bodies could have this problem without drugs ... tc ... d

I'm sorry to hear this. Hopefully she'll get more answers at Duke. Hugs .. Dizzy Ps. Thanks for keeping us updated.

Hi issie, I didn't mean to walk around with these weights on but I can see how that would've been assumed. I just used the when doing arm or legs lifts, circles, etc. to add tension when these exercises got too easy. I held the wrist and ankle weights weights in my hands. And put the ankle weights on my ankles only when doing leg exercises while laying down. I got bored too and tossed these to try to increase my eye hand co-ordination. Tip .. Never ever try tossing weights while on your back .. Lol This thread actually motivated me to pick them up again .. Tx .. D

Fwiw, I'm sure all doctors know how other doctors can make mistakes or jump to conclusions based on bias so I wouldn't worry about it. If you're seeing a doctor who cares about you, this won't matter. Funny story .. I was having some legal problems with an attorney once when my attorney told me not to worry about the other attorney. He said that some attorneys make it a practice and get a thrill out of seeing how big of an Asset (you know what I mean - lol) they can be .. That's all it took for me to realize, that can happen anywhere .. Tc .. D

Sorry to hear you're going to be down for a bit. Fwiw, I've gone through several exercise programs over the years and despite crashing each time due to my me/cfs, I managed to rebuild muscle very quickly. So maybe you don't need to be worried about this. Even then there are a lot of exercises that can be done while laying flat that won't cause you further damage. An inexpensive set of wrist and ankle weights can help here too. I bought both and once I had gotten used to the lower weight, I combined them for extra muscle building. On diet, it can't hurt to go on the wahls diet ... Her info is on the web .. tc .. D Ps. I bought the ankle weights that allow you to add or remove weight sections as needed.

Hi kim, Good to hear you've found some things that have helped you. I've taken or tried to take most supplements over the last 6 years but have yet to rid myself of oi or pem. I may get extra energy for awhile, but it always comes back to bite me in the asset in the form of pem. I'm open to trying these again or more tho. I'm guessing it was a combo of stress and feeling weaker than normal for a few weeks prior. I haven't recovered yet from taking keflex. I've done this before so at least now I have something to look up for future reference. The girl actually just sat down behind me and let out a big sigh. And when I looked at her, she was looking at the ground with that "now what am I going to do " look on her face. When I asked her if she was lost, she said "yes" in the tiniest sheepish voice. So I asked her if she wanted me to help her find her mom. Sheepishly again, She said "it's my dad". And so we headed off in the direction she thought her dad was. When we got close enough a lifeguard yelled out to us asking if it was ? ... I said yes. She looked sheepish once again. Then the lifeguard yelled out to the father, that she'd been found. And notified the other beach patrols. The father held her and told her that she couldn't just take off like that. Then he asked me where I found her. I explained that she found me. He just shook his head when I pointed out how far away she'd been. I was exhausted and mostly braindead so I didn't stick around to see how long she'd been missing. The looks on their faces meant it had been too long tho. They were all very worried.

I'm not sure if that means she's reacting to other excitotoxins or not. Most people do on some level. I react to caffeine with a jolt but thought it was normal. duh .. Blaylock explains this. If it were me, I'd try an excitotoxin free diet to check. Of the top of my head, that means the wahls diet. Dr terry wahls has videos on the web. Gluten free casein free helps many but the wahls diet provides nutrients and eliminates most common food intolerances. Tc .. D

How's her diet ? Excitotoxins, like msg, dyes, caffeine, etc can cause this. Gluten, hfcs and certain supplements will do this to me. A tiny bit of caffeine would keep my adrenals or heart racing for at least 24 hours. I didn't know this feeling wasn't normal until it was gone. I'd had this my whole life .. The amount of drugs needed to stop this would've left me unconscious. Blaylock has good info on this. As does dr vikki peterson. Tc ..d

I always get sob and petite mals from being up too long. This can be just from standing for 10 minutes or less. I just don't get them like I did after opening that window the other day. I'm much better off walking. I feel fine after I've laid down for awhile, typically an hour, tho so I'm pretty sure it's from hypoperfusion. Did you see Dr peckerman's info on this. It's on this site. I'm still waking up here but I remember oxalates inhibit mitochondria. I have a link somewhere or you can google it probably. The low ox diet and/or taking b6 + magnesium, biotin, and calcium citrate before meals is supposed to help with oxalate problems. My doc also recommended a mito cocktail but I need to find that info. I did try these supplements at one point and it didn't help tho. I'm going to look at this again tho. I believe it's called the sinatra protocal. Tc .. D

Yeh, I was glad I was there too. She definitely needed me or someone to get her back to her Dad. I'm guessing she was a kindergartner based on how she acted with me. She was so innocent. Or else my body screams nice grandma .. Lol .. But it was hard on me. I wasn't sure what to say or what we were going to find when we got to her Dad. Luckily the lifeguards were involved by then and her Dad was "normal". Is there info on adrenaline surges and dysautonomia ?

How about these doctors ? I've been reading Dr Vikki Peterson's blog for years and love the way she explains things. I didn't see a dysautonomia reference when i looked just now but I'm assuming she knows what it is since she knows so much. If not, she's in with a group ... ps .. the bolding isn't my idea .. it just happened this way ... tc ... d http://www.healthnowmedical.com/ 2011. HealthNOW Medical Center, Inc. 1309 S. Mary Ave, Suite 100 Sunnyvale, CA 94087 Phone: 408-733-0400

Typically PEM is the easiest to see if you've done more than you would normally. Then it can put you out of commision for a few days. I wasn't officially tested either but since I started having some good days in 2006 - 7, I realized that after I over exerted myself on the good days, I was down for a few days afterwards. For me, the worst day is the first day after over exerting myself. It doesn't take much in my case. That's when I'm more likely to be brain dead and have to spend the day on the couch. The next few days aren't as bad. And then I have a good day again. I have a freind who's been treating for LYME for several years now but she had a lot of co-infections. I know what you mean about damage. I'm sure I have gluten damage ... tc ... d PS .. today was better so I'm not sure what nailed me. I started with the tough window first this time tho. I got a little winded but nothing like before. That was scarey ...

I couldn't stand being out in the sun until I changed my diet. Now I crave it. I typically stay out 2 hours at a time. I seem to feel even better if I get in the ocean too. I was never like this before though. The ocean water used to make me itch ... tc ... d

Sorry to hear your mother is like this towards you. HUGS ... FWIW. After being sick for 22 years and telling everyone I was tired all the time, I finally figured out if I told them that my heart was racing and I'm having to lay down a lot today they were more likely to get it. It gives a better picture of what's really happening too. tc ... d